Guest Flaunt

If you would like to submit a proposed “Guest Flaunt” that could potentially be published on this site, please submit your proposed essay (between 500-700 words) to meg@megzucker.com  

 

One Day at Pet Camp…..  By  Michelle Veloso

Ideally, parents should control the time and place for important discussions with their children (think the birds and the bees).  In reality though, we don’t always control the ‘when’ and ‘where’ of these key parenting moments.

This is how our 10-year old son Henry found out he has Asperger’s Syndrome, a developmental disorder that impacts his ability to communicate and socialize.  Henry referred briefly to this moment in his essay “What Makes Me Me” By Henry Veloso (http://www.megzucker.com/kids-flaunt/) the sequel to this Guest Flaunt.

My husband and I had consulted with teachers, psychologists, and even complete strangers in a “How to Tell Your Child About Asperger’s” parent support group, for advice on how to tell Henry about his diagnosis.  Then one day last summer a camp director unknowingly took control of this moment.  Using Henry’s own words, “Mom picked me up from pet camp and told me out of the blue that I had Asperger’s”.

Henry has enjoyed and attended (uneventfully) many local day camps with typically developing peers.  This time we made a bad choice – a weeklong day camp with a very high camper to staff ratio, inexperienced camp counselors, and a director who lacked the willingness and flexibility to accommodate a child with differences.   It did not matter that Henry is highly intelligent and succeeds academically in a mainstream school.  He was different.

After the first day of camp, the camp director needed to talk to me.  On day two, she asked what to do when Henry became distracted during large group activities.  It became clear the director had no basic training in special education, too few camp counselors on staff, and little sensitivity. I suggested they offer Henry a book to read (he’s an avid reader) or allow him some time with the animals (he is passionate about animals, and this was a pet camp after all).  On Thursday morning, the Camp Director called me again at work, this time asking me to pick up Henry and take him out of the camp.  He had apparently walked into an adjacent room; they were now “afraid for his safety”.  We were offered a refund for the last two days of camp.

I knew his untimely exit would require an explanation; Henry is quite astute, despite his Asperger’s.  I called Henry’s Dad and let him know what we might have to do.

After saying our goodbyes (awkward), Henry asked, “Mom, why are you here, and why did you pick me up in the middle of camp?”  This was the moment (thank you camp director), so right there, sitting in my car, I told our son he has Asperger’s.  Henry was more prepared and poised than his parents.  He asked two poignant questions “Do Other People Have It?” and “Is There a Cure?”

We suspect Henry already knew he had Asperger’s, but he just didn’t have a name for it. After all, Asperger’s is, and always will be, part of what makes Henry Henry.

The Quest to Outrun CF   by, Emily Schaller

“If you’ve got it, flaunt it.” This is of course a famous song from the hit Broadway musical The Producers, and a song that has stuck with me for years since seeing the show. It also came to mind immediately when I saw the title of this blog. Perfection! Of course Meg didn’t ask me to guest blog about my love of Broadway and musical theatre. No, I need to tell you what I flaunt and how I flaunt it.

Cystic fibrosis (CF). This is what I flaunt. I was diagnosed with CF in 1983 when I was 18 months old.  Being diagnosed with a chronic illness at such a young I have only known what life with CF is like. Growing up I was a super active kid just trying to keep up with my two older brother and their friends, not ever really understanding what CF was. Sure my parents pounded my chest back and sides to loosen that mucus up, and I took enzymes when I ate, but I never needed to focus on CF. In third grade I had my aha moment though. While running onto the playground during recess I had a coughing fit. Right then I put the CF puzzle together and realized that it was not going away. I would be coughing for the rest of my life, and this is the reason I was seeing my doctors and nurses every few months for check ups. But after I realized this I kept on running and have not stopped since.

Over the years I started to notice CF more. New breathing treatments were coming out that were helping me breathe better and keep bugs in my lungs at bay. At the same time I was coughing more, going into the hospital for IV antibiotics more often and watching my lung function slowly decline. Also I was eating like a machine trying to gain and maintain any weight that I could.

This was a pivotal moment in my life both physically and mentally. The effects of CF were sinking in just as I was planning for my future, working on Broadway of course. This was way before Facebook and other networking sites. My family, friends and I were essentially navigating and dealing with CF with no real opportunities to share my fight with other CF patients like we can so easily today.

By the time I was in my mid 20’s I was in the hospital quite a bit treating lung infections. I was doing everything the doctors were prescribing but was still getting sick. This is when I decided there is more that I can and must do to turn my life around. So, after being a couch potato and terribly unhealthy eater for so many years I decided to run and do the lifestyle change thing. This was not easy and running a block was where I started. Eventually I worked up to a 5K and just in those month of training to do so, my lung function increased to the highest numbers I could remember seeing in years. I felt great! Also I started eating a more whole foods based diet.

With this new recipe for success I was only going into the hospital once every year or two. Once I knew this was all working I started cycling a lot and running even further. One half iron distance triathlon, eight half marathons, thousands of miles of riding and hours of yoga later, I am at the best place I have ever been. Also I am on a brand new drug that treats CF at the cellular level and essentially helps to alleviate symptoms before they happen. Combine this all with my now vegetarian diet and I am feeling better and stronger than I have ever felt in my entire life.

In 2007 I founded the Rock CF Foundation (www.letsrockcf.org) that focuses on raising funds for CF research and spreading CF awareness. While working on Broadway would have been super amazing, I’m glad I figured out what my true calling is. The coolest thing right now is being  able to tell my story all over the country to audience large and small.

If I can inspire just one person to be ok with who they are and what they are flaunting, then I know I’ve done what I am supposed to do!

 

 

 

Little Arm, Big World  By, Stacey Newell

When Meg asked me to write a Guest Flaunt I was flattered that someone so awesome thought I might have something interesting to add to all the heartfelt and beautiful flaunts that I have had  the pleasure of reading. When I gave birth to my son Nick 27 years ago, I had no idea how to be a mom to anyone, let alone a child with one hand. I didn’t plan on being a young single mom but then again I didn’t plan on having a child with one hand either and so the journey began.

From the moment I laid eyes on him I knew my life would never be the same. I literally could not take my eyes off him; he was and still is my biggest accomplishment and the love of my life. Okay so back in the dark ages before the social media I knew no one else who had a child with a limb difference. I was sent by the Pediatrician to an Orthopedist who took one look at Nick and said well he has one hand, no explanation, no diagnosis, no cause, nothing but a referral to a local Children’s Hospital. They had no answers either; their suggestion was that we get him fitted for a prosthetic ASAP so that he would not have any body issues. Okay so I was young and naïve–you try to hold a six month old active little boy while they cast him for a prosthetic arm, not easy and if we didn’t want him to have any issues with his body then why where we trying to alter it? The arm reminded me of a Barbie doll arm stiff and not bendable. I put it on, he took it off. It did come in handy when he started teething and that’s about it. I came up with the idea to glue a piece of Velcro to the hand and small toys to try to get him to use it to pick things up, he was not interested. Of course he took it off and threw it where ever we went and I was always looking for his arm. I may not have been a doctor but I was the one who spent all of my time with him and he did not seemed bothered in the least that he had one hand, other people did, but not him.

Plan B let Nick do what he wanted. He did go on to have many prosthetics and was the youngest one at the hospital to have a myoelectric arm but he still did better without them. We have always called it the little arm and still do. So when people stared I just said he was born like that.  Some said I’m so sorry, some said nothing and some walked away shocked. I never pitied him or felt sorry for him; I encouraged him not to let others define who he was and what he was capable of. If anything, I taught him to work hard for what he wanted and never allowed him to make excuses for himself, some people saw it as mean. There was always the well-meaning person who thought they should help him tie his shoe, or zip his coat and I would politely but firmly tell them no, he has to learn to do it himself, if he fell I said you’re okay get up, when he wanted to quit I would not allow it.

I taught my son to be kind, but tough. The world can be a cruel place and not just for people with one hand, so most of all I wanted him to like himself. Because if you truly believe in yourself, work hard and persevere, anything is possible. There were plenty of worries and tears along the way, mostly on my part in private. I never wanted him to think I was sad or ashamed because I wasn’t. I was just a mom who wanted the best for her child like everybody else.

And that is the scaled down version of how my son became ”Notorious Nick Newell,” the XFC Lightweight Champion of the World. I still have his very first prosthesis “the Barbie arm” and every once in a while I take it out and think about all the trials and tribulations that have lead us to where we are today.  Yes, there are tears, happy tears but tears nonetheless.
And win or lose he has and always will be a Champion in my eyes, not because he is a fighter, but because he is my son.

 

 

 

 

 

 

 

 

 

 

Robin's Flaunt   by, Dana Risa Dinsmore

My second child was born at 29 weeks. Robin was very tiny (2 pounds, 6-1/2 ounces) and almost transparent.  Her tiny body had not had time to accumulate any fat.  Our greatest fear (among many) was for her lungs: I was given two injections of Betamethazone to try to promote development of those precious lungs.  All we could do was pray…

Somehow we made it through all those weeks in the Neonatal ICU; all those battles with infection and with a tummy-tube to feed one so small and delicate.  I remember, when I was finally permitted to hold my baby girl, syringing five cc’s every minute into her.  Anything to give my baby LIFE. Holding her like the most fragile piece of china you can imagine.  I never wanted to let go…

Born without suck or swallow reflexes, we went through a trial-and-error time of finding a nipple through which Robin would obtain life sustaining nourishment.  Different color nipples required varying degrees of suck in order for her to obtain formula.  Blue ones, red ones, yellow ones.

Fast forward…we actually make it home and Robin begins to grow and be seemingly just like any other little girl.  Her rather small stature and lighter weight were continuously attributed (at least by our pediatrician) to “history of preemie”.

Now Mommy and Daddy (sadly) are divorcing and Robin and older sister Pam are with Mommy (me) one week and Daddy the other week.  On Daddy’s turn, a trip to Cook’s Forest results in an accident on an ATV.  Robin is observed to stand up, turn blue and fall to the ground.  She is Life-Flighted to Children’s Hospital in Pittsburgh.  We are frantic and are told to “pray that it’s not PPH”.  Seven hours later, we are herded into a conference room. I notice boxes of tissues being tossed across the table.  Then we all hear the words that will change our lives irrevocably and forever:  “It’s what we told you to pray about.  Robin has Primary Pulmonary Hypertension. Take four football stadiums and fill them to capacity.  Now take four random kids of that vast group – Robin is ONE of those four kids.”  I don’t remember much; my heart died…

As time progressed, and our wait for a double-lung transplant continued, we were determined to give Robin as much quality of life as possible. To that end, when we went out (which was a LOT) we took with us a plastic fishing tackle box filled with all of her various medicines.  Tiny brown glass bottles of an antibiotic specifically designed to prevent/cure oral thrush; antibiotics, anti-fungal medication and drugs designed to aid Robin’s digestion. Another constant companion was her “water” pill (Lasix) – within thirty minutes of ingesting that one, she would need to urinate. Some stores allowed us ready access to their restrooms, while some staff I am certain will always remember the Irish mother who would not be denied! Lots of bottles and plastic syringes (sans needles) to draw up the dose and squeeze into Robin’s ever-patient (no matter how horrid the taste) mouth. Robin was the essence of a “trouper”; she NEVER complained.

We also had one other constant companion:  Robin’s oxygen container and cannula. This was a heavy item, carried by Mom or Big Sister. Obviously, supplemental oxygen was vital to one with ruined lungs.  More than once, over almost six years, Robin or Big Sister would notice someone staring at us as we performed the essential procedures with meds and cannula.  The shushed words. The NOT shushed words. The finger pointing. The STARES.

But Robin and Pam had an interesting attitude toward this unsolicited attention; they wanted to EXPLAIN what was going on and let both the children and the adults UNDERSTAND that there was nothing to fear.  Come on over and SEE and TOUCH the equipment and MEET us!

We were able to meet more Mommies and Daddies, Grandmas and Grandpas, Aunts and Uncles and, of course, tons of other CHILDREN this way.  How did it end once their curiosity had been appropriately and SAFELY satiated?  With HUGS and ACCEPTANCE! 

Looking back…with God’s help…how could it have gone any other way?

Robin went to Heaven in November of 2001.  At her funeral mass, she was pronounced a Saint and a Martyr to her pain by the Holy Spirit.

I am honored to have been part of God’s awesome plan.

 

 

 

 

 

 

 

 

 

 

Celebrating My Difference    By, Johanna Rossell

I grew up in Caracas, Venezuela. As a typical person that grows up in the capital of a Latino-American country, I, not only went to College in Caracas, but also lived at my mom’s home, same apartment, until I was 24 years old. Little did I know that after that, my life was going to change forever and I was going to live in different cities all over the world (Argentina, Chile, Switzerland and the US), learning new cultures, making new friends, building a life “on the go.”   Since the day I left Venezuela, change and adaptation, while still just being “me” has been my priority.

Being an eternal foreigner is something you need to get used to.   For example, people looking at you and wondering where your accent is from, just trying to decipher.  You also get used to identifying when somebody is not listening to what you are saying. So nowadays, when I meet a new person or present at audiences for work, I immediately flaunt that I am from Venezuela… It is my way of saying,  “Let’s get back to the subject!” In fact, I am glad that I get to clarify this now, because in the past, if I was speaking English, it could happen that people would be looking at me and wondering, “What is she saying??”

After leaving Caracas, my first stop was Argentina.  In this beautiful country I learned that we, Latino Americans, are really different, with different cultures and beliefs. I underestimated how different they were, but I found that was what made the experience exciting. Most importantly, I learned that you need to be really open to others perspectives even when they don’t sound familiar. I had definitely left home, but I was up to the challenge…

I was so ready to experience even more change, even if it meant feeling different in another country that after three years in Argentina, I took a year off and traveled around the world! Never giving up on celebrating my differences and being open-minded about the road ahead will sum up a year filled up with true joy across continents.

However, the big “road ahead” came when I moved to Europe and I needed to work for a Swiss company where I would have to speak English as my primary language. Moving to Switzerland stretched my change abilities to the maximum.  Let’s just say I realized there that the English I learned at High school and College that I thought was good, was instead not something to brag about. Until this day, I ask myself, “How is it that I got a Global Marketing Strategy Manager role?”  But of course, just like any job nowhere you live, I had to make it work and be good at it, no matter my language challenges and how people might be viewing me since I was a foreigner.   I remember been in meetings, having a great idea or suggestion in mind, but by the time I was ready to express myself, the meeting had moved on to another subject… very disappointing and frustrating… listening to my voice mails was another ordeal.  “Why couldn’t people say their phone number extremely slowly so I could get it without rewinding 4 or 5 times?”

While in Switzerland still, I had a boss from the UK.  She looked at me one day and said, “You have a great background, but I don’t want people to say in the corridor, there goes the Spanish lady we can’t understand!”  So, she sent me to RADA – The Royal Academy of Dramatic Art in the UK for an intensive business presentation training and tough me to think in bullet points… 1, 2 and 3… Needless to say, I still remember her with warm appreciation, as I still was the “Spanish-speaking lady” I was proud to be, but now with the ability to communicate comfortably in a language not native to me.

Then I moved to New Jersey, USA.  There, there were no French, German or Italian English accents.   Everyone sounded the same!   It was time to take my communication abilities to another level. I dealt with the fact that at work and beyond, people will doubt my thinking abilities because of my language skills.   I still get that once in a while.  But, after 8 years in the U.S., and now living in Fort Worth, Texas, I finally feel like a native….American! Of course, with an accent!  So, I will always be different, I am proud of that, and so I focus on showing who I am to the people I meet at work and outside of it, and not what I sound like. I emphasize my strengthens, in the personal side by impacting people in a positive way and in the business by proactively looking for innovative ways to achieve results.

Throughout my years moving around the globe, a constant in my life has been to make long lasting friendships, not hundreds of friends, but a group of good friends. My good friends have something in common, they all embrace and celebrate differences and are not afraid to flaunt them!

Having the opportunity to adapt to change, I haven’t lost track of who I am and always choosing the positive side of life has allowed me to have a beautiful family, a successful career and great friends all around the world.  Who knows where I will live next, as I also chose a husband that likes the international path, but what I do know is that life will happen for me, I will celebrate it and embrace any  new road ahead, no matter what I sound like!

 

 

 

 

 

What I Learned From My Sister     By, Ted Weinbaum

My sister Meg may have had to struggle for much of her life to come to terms with her physical differences. When we were growing up, however, I was often unaware of what she was going through, and generally I just saw those differences as being uniquely hers, and a part of who she is.

 

As a matter of fact, I always thought her hands and feet were cute. We had names for them, and they actually had a lot of personality. Like any kid I had various toys and stuffed animals, legos and so forth, but none of those things were as entertaining as the elaborate stories and plays Meg and I would act out with our hands as characters. As I recall, my fingers never had particularly distinct personalities, they usually played various bit-parts, while her extroverted characters were the center of the drama. We had a lot of fun really.

 

And it’s not as if she ever struggled to accomplish something that would’ve required me or my brother to help her out. She just did some things differently. She could tie her shoelaces. Her handwriting was always a lot better than mine. These are things that no one else could have taught her, she had to figure out how to do them. Later I would come to appreciate just how tenacious and perseverant Meg really is.

 

Except for a period when our family lived abroad, we lived in the university town of Urbana, Illinois, a 2 1/2 hour drive south of Chicago. Perhaps the first time that I became aware of the difficulties Meg faced was when we made a family trip up to the big city. I wasn’t aware of the reason why until we showed up at a very unpleasant place — I don’t remember if it was a factory, but it had an unsettling industrial feeling, and I remember my sister was upset. This is where she was fitted for the orthopedic shoes which she would come to despise. These brown leather shoes were not made to flatter the wearer, in fact they looked like they were designed for baby elephants to go bowling in. They had thick soles and were quite heavy — potentially deadly if thrown, which she did a couple of times when hard pressed (like any siblings, Meg, our brother and I had our share of quarrels!).

 

Junior high school is a challenging social dynamic for anyone, so it’s not hard to imagine the issues my sister would face if she continued to wear the terrible shoes she bitterly complained about but was told she must wear, lest she injure her feet. But Meg would not be deterred, and I remember how happy she seemed when she came home one day with a new pair of shoes that looked just like everyone else’s. Sure they fit differently, but they worked just fine. She must have learned to be thrifty, as she had to save up the money to buy them herself. The effect on her confidence was palpable.

 

My brother and sister became counselors at the same summer arts camp in Traverse City, Michigan, where I was a camper. It was there that I saw Meg as more than an older sister — but as the role model that she seemed to have become with the cabin of campers under her supervision. She had a great rapport with these girls, and I could see that some of the girls really looked up to her for support and advice.

 

Other than noticing stares from others when they first encountered her, I really don’t recall people treating her as someone to be feared or pitied. I’m sure it happened — like when we lived in the Middle East, where we found ourselves in societies where people with these sorts of differences are marginalized. But overall it’s worth noting how quickly people move beyond seeing Meg only in terms of her physical differences — I believe this is because she goes out of her way to be friendly and talk to people she encounters, and thereby sets the terms on which the interaction proceeds. If she were to act withdrawn and reserved, as many would expect her to, it would be different.

 

And that’s why her idea of ‘flaunting it’ makes perfect sense. If you feel insecure about something, it’s easy for others to read this vulnerability before you even say something. And then you’ve been pre-judged and have to struggle to overcome being defined by this initial interaction rather than by your own character. People don’t know better before they know you. Especially if you have a physical difference, you have to actively make the move to inform the other person about who you really are.

 

Looking at my sister’s successes despite the difficulties she has faced, at her family and all the wonderful people who have made themselves part of her life, I think she must be on to something. Not everyone can be as gregarious as my sister Meg, and just walk up to strangers to introduce themselves (I certainly don’t!). But we don’t need to do that.  Just by having the confidence not to hide what can’t be hidden, by working with it, by bringing it out and owning it, our limitations become our strengths.

 

It’s up to you to show people who you are, and you should be no more hung up on your particular issue than you want anyone else to be. Whether your challenge is physical or otherwise, everyone needs to figure out how to persevere and move beyond it.  If others can’t handle it, it’s their problem; it doesn’t need to be yours. That’s what I take away from my sister’s example. Go Meg!

 

 

 

 

 

 

 

 

The World At My Fingertips    By,  Jennifer Stafford

My possibilities are endless; the world is at my fingertips, altered but not damaged. Every day is a gift, a chance, a “shot in the dark,” and a lottery winning that can’t be spent. If my life were completely my own I could not speak with such conviction, but it just so happens that I am a teacher, so it is -totally- not my own. As an educator, I share my gift, my chance, and my “shot in the dark” with hundreds of young people who give back freely and without solicitation.

For many years I dreamed about becoming a music teacher but thought that I could never realize such an aspiration, one that requires such a wide depth of knowledge and so much talent and hard work. I also thought that because of my hands I could never learn to play the piano, a critical component when teaching choral/vocal music.  I hate to admit it, but honestly, this fear almost stopped me. I accepted it for years, thinking, “You just can’t; you lack the orthopedic facility to play, and if you can’t play, you can’t teach.”

And that was that.

Fortunately, however, this did change. Incredibly, what it took to make me see that I really could, as the cliché goes, “do anything that I set my mind to,” was someone else telling me that I could not learn to play, that because of my hands I was less than and should resign. I will never forget that day on the bus in high school….  It was time to schedule for spring classes and I was hesitantly telling a friend that I wanted to take piano class and learn some basics. My friend then, in a very matter-of-fact way, said, “Oh Jenny, you will never be able to play the piano. If you had normal hands you probably could.  You should choose a different class.”

And again, that was that.

I went home that evening feeling both defeated and validated in my original perspective about the piano. But later that night as I told myself the story of what had happened on the bus earlier that day, something happened:  reality hit me like a rock, like a ton of coal, or like a grand piano being pushed out of a ten story building and right on top of my head -Yes you can. You can learn to play the piano.  “Why couldn’t you?” I asked myself.  “You can do everything else –why not piano?” How silly I was before and how lucky I was to have such an oblivious friend!

I went to school the next day and signed up for the semester long class. At the end of the semester instead of finishing with Amazing Grace or The Entertainer (I honestly can’t remember what was in that book anymore) I finished with Beethoven’s  Piano Sonata No. 14 in C-sharp minor “Quasi una fantasia”, Op. 27, No. 2 (popularly known as the Moonlight Sonata)….I was a natural.

Now,  I am by no means a virtuosic player, but I am passionate about playing the piano and I can confidently say that I have a gift, that playing for both myself and  my students gives me joy, and that I have a lot of growing to do in the world of classical repertoire. I can also say that after this experience I felt unstoppable and still do. What wonderful timing.

Even though I had lived normally and never had considered my hands as a handicap, this one experience was somehow different and has changed me. It has given me a light, a spark, and a real advantage as a teacher. (Sometimes I feel that it is almost unfair, this rare perspective I am blessed with)  My hands make me vulnerable in a school setting, where name calling is commonplace and physical differences are not always accepted. But because I love myself so dearly, I give my students permission to do the same. (love themselves… and me too!)  I must say that I am on my way to becoming a wonderful role model for my students. As a role model in the making, I offer a changed definition of beauty and of “normal.” For my students who struggle with self- image, this is both remarkable and crucial. How very wonderful.

Even though I am a very young woman, the struggles and pain that brought me to my students give me wisdom and understanding to help them.  I do not just tell my students, “You can do anything!” to have them roll their eyes at me (because “that’s what teachers are supposed to say”).  I tell them “You can do anything!” and they believe me –because I have proof,  because I am proof.

I am not embarrassed anymore; I am proud. I have hit the lottery and the royalties are boundless –they are magical.  The world is at my fingertips; altered, but not damaged.

 

 

 

 

 

A Different Difference Every Day  by, Samantha

 

I am the mother of a teenaged son with a difference.  It is a difference that others can see, though my son was not born with it.  More importantly, it is a difference that can change in days, hours, or even minutes. What is easy today is harder tomorrow, and vice versa.  Even the diagnosis and prognosis may change.  And therein lies the real challenge!

At the age of 13, my son Zachary was diagnosed with a tic disorder.  It may be Tourette’s Syndrome, or it may not.  How will we know?  If it goes away, it was a tic disorder.  If it doesn’t, it’s Tourette’s Syndrome.  The uncertainty is annoying, but honestly, the label does not matter.  What matters is how my son sees himself in light of this difference.

Zach’s tics began with a very subtle tapping of one foot on the other.  Then, he was flicking his left arm as if practicing his pitching.  The foot tapping ended and we noticed some blinking, but he wears contact lenses, so we ignored it.  Then, the blinking was gone, but he was clearing his throat – once or twice a minute, then more often.  At one point, he was clearing his throat more than 60 times a minute!  There was no ignoring that Zach had Tourette’s Syndrome.

Zachs’s diagnosis was made at the end of eighth grade.  In preparation for the transition to high school, I met with the school district child study team.  I was asked, “What accommodations can we put in place for Zach?”  That is the most difficult question to answer on behalf of a child with Tourette’s Syndrome.  Zachary can leave for school in the morning with one set of tics and come home in the afternoon with another set.  A tic can appear in the blink of an eye (pun intended!) and disappear just as quickly.  We can arrange for a private testing location for standardized testing (so that his throat clearing does not disturb his classmates) only for him to have no vocal tics the day of the exam.  Trying to make arrangements for Zach at school is like shooting at a moving target!

Having said all of this, Zach has relatively mild symptoms.  Besides the ever-changing array of motor and vocal tics (though not the stereotyped shouting of obscenities…yet), Zach has none of the other symptoms associated with Tourette’s syndrome, such as attention issues or obsessive-compulsive behaviors.  He has slight anxiety, but unfortunately, many teenagers in 2013 have anxiety.  He has missed no school because of his symptoms, and he participates in sports and co-curricular activities with his peers.  Zach has a driver’s permit (something we were not sure that he would be allowed medically), and so far, the tics have not interfered with his driving.  Zachary does not define himself by Tourette’s Syndrome, and the people in his life appear to accept his tics as a part of him, like his red hair and his terrific ping pong skills.  At home, Zachary’s tics are part of our “new normal.”  My younger son, who at one time was embarrassed by his brother’s random movements and vocalizations, recently commented that Zach’s tics had almost disappeared and that his friends probably thought that the tic disorder was gone.  This is not even remotely the case (objectively, the tics have worsened with puberty), but Tourette’s Syndrome had become irrelevant to family and friends.

We are now focusing on choosing the colleges to which Zach will apply in the fall.  (Oh my gosh!  I’m sending my son off to college where an entirely new group of people will observe his difference and draw conclusions about him as a person!  He can handle it, but can I?)  Recently, I suggested that Zach write one of his college essays about living with Tourette’s Syndrome.  His reply?  “I’m not about that!”  “But that is something that makes you different from the other applicants, gives you a unique perspective on the world and a greater ability to accept others for who they are, “ I stress.  “Nah,” he repeated.  “Tourette’s is not what makes me different.  Wanting to start a ping pong team is what makes me different!”  And that was the end of that!

 

 

 

Sticks and Stones   by,  Michael Thornton

Sticks and stones may break my bones, but words… We all know this little saying that we cried out to keep the playground bully at bay… but is it true? Will words never hurt us? Of course not! Words can cut through us and make us feel like we are a nobody.  They slice us like a razor thin sword held up by a mighty enemy. I should know how painful words feel.  You see when I was a baby, I had Spinal meningitis and spent many months in Arkansas Children’s Hospital recovering from its effects on my life.  So I did not have a great start to my childhood, but the problems did not go away after I started school. Some of my classmates figured out I was different than they were and so they started calling me the R word!

The R word!  Oh how painful that word was to me.  I knew I was different… but was I the R word?  No, I was not.  I did have a slight speech problem (and still do at times, but I can live with it) and maybe I did not learn as quickly as they did, but I never was the R word.  In fact, no person is ever the R word in my eyes.  They may not be like some people, but never are they the R word.   R word! I cannot remember the first time I heard that word said to me, yet I do remember the pain I felt every time I heard it. Honestly it felt like a ton of bricks – no worse, more like manure being dumped on me. It was as if they were saying, “You’re not worthy to be on the same playground with us!” Gee, how small that word made me feel.   “Mom, why do they pick on me?” That question I asked numerous times when I was growing up.  In fact, I still question why they did that.  Did it really matter?  Did they achieve their goal of making me feel like a worthless soul? No, of course not!  If anything they did achieve was to give me a sense of knowing that I was different from some kids, but that was what made me unique.

R Word!  Every time I use that phrase here it brings out the pain I felt back then.  Oh, how that stung me deep down inside.  In fact, the more I reflect on it, the angrier I became. In reality, I wish I could go back in time and tell those little punks off!  Better yet, I want to show them how it really felt to be called that ward by using a few words of my own.  However, would that really make a difference?   For some people the R word may not be the word that haunts them like a hungry pit bull.  Their word may be loser, moron, nobody, or worse yet, you make me sick! It really does not matter what bullies say or do to put you down, all words hurt when used in a harmful way.  Besides, being harmful, words may also be positive in a person’s life. I remember a number of people telling me that I can do anything I set my heart to do, and to not let anyone tell me otherwise. You are not what others tell you who you are; you are who you make yourself out to be.  It was my option to decide if I was going to let two or three punks tell me that I was not a worthy person, or was I going to let my life be determined by who I chose to become? Words truly do make a difference in a person’s life.

Sticks and stones may break my bones, but words can be as beautiful as a red rose in a vase.  I always look for the good in everyone and say nice things about them. Words can either lift people up, or bring people down so why not be a lifter today and say something positive about everyone you meet.  Even your worst enemy needs to hear a positive word today so why not be nice to them the next time you meet.  It just might be the difference maker in their life.

 

 

 

 

 

Raising A Child to Be Born Just Right   by, Jen Lee Reeves

I’m thrilled to be able to share our story. I’d like to introduce Jordan. She’s seven and is proud to flaunt how she was born just right with one hand. She has a left humerus and probably some tendons that would have been connected to an elbow but she doesn’t have one. I’m proud of Jordan for a lot of reasons. Jordan is currently in first grade. She isn’t afraid of new environments, but we prepare. In the last school years, we’ve written short books telling her story so kids can move past her limb difference and enjoy her vibrant, high energy personality. On Jordan’s first day of school this year, a boy who isn’t in her class walked up to her on the playground and called her gross. Jordan didn’t bat an eye. She walked right to her principal and told him what happened. She didn’t fret. She is matter of fact. She expects respect and she is learning to be respectful herself. (Being seven is tough work.) As a mom, I’ve spent so much time trying to help prepare her to not let comments like that boys’ to affect her. As a person who grew up with all of her fingers and toes and STILL had self-confidence issues, I want to hide her from our culture of perfection. But we all know that isn’t possible. There will always be mean kids or mean adults. My gut reaction is to protect her. It’s tough knowing she has to deal with mean words and staring for her whole life. But I realized pretty early on that sheltering my daughter will not protect her. It will make it even harder to grow up in an image obsessed culture. Instead, I focus on helping Jordan prepare for reactions that may hurt. Last summer, my pride was front and center in a very symbolic way: Jordan was asked to be a flower girl in THREE weddings. She was proud and beautiful in each event.  She proved it each time she was a flower girl. Jordan proudly balanced the flower basket incredibly well with her little arm as she evenly decorated the aisle. She can flaunt her skills with pride… And she’s even better on the dance floor! As the mom of a daughter who was born with a limb difference, I’ve encouraged Jordan to live her life with confidence. To do that, we’ve been able to find many ways to meet other limb different kids and adults. I’ve used our blog, Born Just Right, to share our experiences and meet families everywhere we travel. Jordan and the rest of our family have also been a part of Camp No Limits Missouri since it first arrived in our area in 2009. Jordan was three and a half at the time and we just keep attending. The family camp has helped build Jordan’s focus on core strength (the kids do Pilates each day) while parents get support and learn more about limb difference resources. Siblings get to lean on each other. They also get more perspective of what it’s like to have a limb difference. The camp is so special to us, Jordan raised $2300 for it as a part of her birthday celebration in December 2011. For 2012, we raised $3790 and counting. I ran in a half marathon and Jordan had a Finding Nemo fundraiser celebration when the movie came back to theaters. As Jordan grows, she realizes she’s in the public eye thanks to the Born Just Right site and her obvious difference while living in a city that isn’t very big. She recently was rewarded a sports inspiration award for all of the sports and activities she tries to do in our town. I tell her that people notice how she tries and tries and tries. I personally hope that by encouraging her to try, I’m raising a confident young girl who not only trusts her abilities, but she also trusts her ability to lead and mentor other children (and adults) along the way.

 

Let Me Introduce Myself   by, Kristy Desilets

Everything I learned about presenting myself positively to the world I learned from my parents. My father, one of the smartest people I know, has always thrived on giving people factual information in a straightforward, honest way. My mother winds her way through life doing kind things for others and giving of herself in an extremely gentle and nurturing way. Together they taught me graceful skills and strategies to navigate life’s social awkwardness and gave me the voice to introduce myself. Let me introduce myself. My name is Kristy. I am a fifth grade teacher. I love learning foreign languages, am dangerously good with art materials, and run four miles along the Charles River every Saturday morning at 10:30 am, rain or shine. Oh, and I also was born with one hand. I neglect to mention that sometimes because I simply… forget. Having only half the fingers of the average person IS different, though, and differences do attract attention, initially. As a young child, my parents modeled for me various appropriate ways to respond to the attention I occasionally attracted. They helped me understand that staring and questions mostly stem from pure curiosity. Once someone’s questions are answered, everyone can be free to feel comfortable. I eventually learned to take over the task of answering gracefully for myself. Single-handedly (ironic word choice), the most memorable teaching moment from my mother was how she helped me introduce myself when my family moved from New Hampshire to Massachusetts halfway through first grade. After we both decided on the best way to do it, she asked my new teachers if we could do a giant show and tell. So we did. Interestingly, over twenty years later, I still have people from my graduating class tell me that they fondly remember that day in first grade when I, the new girl, stood in front of the entire first grade with my mother and talked about my hand. Everyone’s questions were answered and everyone got to come up to me and shake my hand (not sure which one). That day at recess, after my mother left, I was a celebrity in the school playground. I had a mob of around one hundred kids  trying to talk to me and be my friend. I attribute this single act to be the reason why I was never bullied or picked on in school because of my hand. It is also the backbone of my approach towards every first day of school from now until the end of my teaching career. The fifth graders I teach are about ten, which is old enough that most hold themselves back from asking questions about my hand for fear of being rude. That is why I still use my mother’s show-and-tell strategy. Within the first ten minutes of class on the first day of every school year, I give a short, two-minute talk about my hand and being born “asymmetrically.” Then, I open the floor up for questions. Some kids are brave and ask, and others wait until they know me better. Either way, I tell them that they are welcome to ask me anything about my hand at any time during our year together. Once I do that, we can move on and no one is left wondering or distracted. This is important so that we can get to the important business of academics. As this is my fourth year in the school system, many kids know about me before meeting me, or have heard varying levels of the truth. One even admitted that she had imagined me as an elderly woman with absolutely no arms at all. I’m sure many interesting rumors get passed around. At any rate, rumors dispelled, I assume most of them forget about my hand completely after the first week. Others remember it more than I do. One student this year constantly tells me how much she adores my left hand: “It’s so cute! I love it so much!” Truthfully, though, we have many other things that require our focus, so it takes a back burner. And so I continue, thanks to my parents, to introduce myself with confidence in all walks of life. Have I always been this self-assured? Of course not, I’m only human. But it makes me happy to think that when I’m honest and upfront, it makes me feel comfortable about being different. And when I’m comfortable, other people are comfortable. Only then can we get to the very important task of learning and bonding over what makes us similar.
Check out my blog! www.misspolyglot.blogspot.com

 

 

 

The Real Reason Nate is Special   by, Christine Muehe

There are things in life that amaze me, but none of them hold a candle to my children. All three of my boys delight me in their own ways, but for my middle one, Nate, it’s not for the reason(s) everybody is probably thinking right now. No, it’s not because he pitched a no-hitter several summers ago, which lead to a big local news story with sports anchor, Brad Fanning, on KCTV5, though that was really cool. No, it’s not because he threw out the first pitch at a Kansas City Royals baseball game and asked his oldest brother, Andy, to be the catcher, although asking his older brother to catch for him so they could share that moment together (and probably because he’s a really good catcher for his high school team) did make me super proud. No, it’s not even when he was chosen to be the lead role in a in a Nike commercial that was shown during the Olympics this past summer, though when I saw it air on YouTube the first time, tears of joy streamed down my face (and still do every time I watch it). No, as funny as it may sound, it’s not for any of those reasons.  The reason Nate truly astounds me may surprise you. When Nate turned 1 year old, we were all sitting around the kitchen table, celebrating his birthday. There was a cup of water, not far from his reach. As he sat on my lap, he reached for the cup, but his dad, who was on my left, swiftly moved it to a place he “thought” was out of Nate’s reach. Nate again reached for the cup, but this time, his Grandpa Muehe, to my right, moved it again to what he “thought” was out of Nate’s reach. As these two very capable men with their four hands tried to maneuver this cup of water out of Nate’s reach, he wasn’t about to be deterred. Four hands were not going to discourage my one-handed, determined child, and in one swoop, Nate finally grabbed the cup and knocked it over. I couldn’t stop laughing. None of us could. That was the day his dad and I would both say we “knew” that no matter what happened in his life, nothing was going to stop Nate. As Nate got older, he never thought of himself as different. He loved playing on the playground at the park while his older brother had football practice. He loved the monkey bars as much as any other kid, and was delighted when I would lift him up and help him swing through each one. At the age of only three years old, he could ride a skateboard down our driveway and turn it onto the sidewalk. He played soccer for a few years, but it never was really his thing. I think he thought there was way too much running involved. By the time Nate was 5, he buttoning his own buttons, tying his shoes, catching a football, swinging a bat, and riding a bike without training wheels. Being active and outside was what he loved. As he aged, his dad could see he had a strong right arm, great aim, and could throw a ball further than most kids his age. That sealed his fate as a center fielder and pitcher. It was around Nate’s 4^th grade year when we decided to give him private pitching lessons with a former KC Royals pitcher, Jaime Bluma. Jaime taught him everything he knew about pitching, and Nate thrived. His pitching coach was always praising Nate and gave him the most positive feedback, and Nate loved every moment. Jaime was such a boost for him, and I think over the years he really helped instill Nate’s resolve that he could do anything he set his mind to. When his baseball coach, Donnie Happel, came along, that was another turning point for Nate. Coach Donnie accepted Nate for exactly who he was; a kid that loved to play baseball. I realize now, looking back, that Jaime and Donnie never thought of Nate any other way, and I believe that really helped Nate become the person he is today. It’s funny how these moments in time and people in our lives can help shape the type of person somebody is going to be. Nate isn’t captivated with himself. He’s not conceited or arrogant, and he doesn’t think he’s more special than anybody else. In fact, he’s quite the opposite. He’s more like, “What is so darn special about me? I don’t get it.” THIS is the part that amazes me; that Nate truly doesn’t get how amazing and inspiring he is for many people, including me, his dad, and especially his brothers. He doesn’t understand the hype that has come about because of people like him. To him, he’s just a kid that loves hanging out with his friends, goofing around with his brothers, laying out for diving catches on the baseball field, and doing flips off the high dive with his younger brother, Matthew. He’s just Nate, and that to me is the most amazing and best thing of all. Check out an article on Nate!  He was also a 2012 Best of the Flaunters recipient and his Nike commercial recently featured in the “Find Your Greatness” Feb 1 2013 DHFI blog post! http://www.incrediblefeatures.net/blog/2011/09/twelve-year-old-with-one-arm-excels-as-baseball-pitcher/

 

 

 

 

 

Dating, Love & Marriage: Only Different   by, Eric Westover

I had dated throughout my life and been previously married for 6 years in my late 20’s. Don’t get me wrong, I wasn’t a “Ladies Man” or a “Player”, just a regular guy looking for “The One” & genuinely enjoying meeting women, whether the date worked out or not. I’d had the regular social fears of “I’m not good-looking”, “She’s out of my league”, & the usual “What ifs” that we tend to get caught up in as we traverse society’s dating expectations & etiquette. But I never fretted over not being able to find the girl of my dreams. In 1992, I was involved in an accident at work that resulted in nerve damage to my right wrist. After conservative treatment we opted for surgery to repair the damage which resulted in me acquiring a disease called Reflex Sympathetic Dystrophy (RSD), or what is known as Complex Regional Pain Syndrome Type 2 (CRPS II) today. In 2001 I started experiencing severe symptoms in the fingers of my right hand. After multiple surgeries, which were doing ten times more harm than good, I was referred to the Mayo Clinic in Rochester, MN, just 90 miles from my home. After doing some diagnostic tests it was determined that I did in fact have severe CRPS II and due to the massive amount of damage in my wrist I would never be able to use my hand again. While I was devastated at the news I had been researching the possibility of amputation to be able to regain function with a prosthetic & to be able to live a “Normal” life. I discussed this with my surgeon who agreed that it would be my best option to return to some semblance of a life. Unfortunately the insurance company didn’t agree. So we embarked on a 2 year journey of treatments, drugs, drug trials, nerve blocks, pain management, & therapy while I fought the insurance company tooth & nail. During this time I lost everything because I couldn’t work. I lost a successful live entertainment production company that I had built from nothing, I lost my house, I had to sell everything I owned, and I was forced to move in with my parents at the age of 32 (I thank God daily for their support & love, otherwise I would’ve been homeless). Finally, in 2004, I won my battle with the insurance company and they agreed to the amputation! After having my right arm amputated below the elbow in May of 2004, everything changed for me. How people physically looked at me, treated me, & thought about me was drastically altered and so was my own perception of who I was and what my future would be like. You may be wondering, “Why is he bringing this up now?” Well, a few days ago a conversation was started on Facebook because of a young lady named Sarah Herron, a contestant on the reality show “The Bachelor”, who also happens to be a congenital arm amputee on the left side. She had made a statement that she felt that she was still single BECAUSE she was missing part of her left arm. The conversation that ensued was great, with many different opinions & perspectives from others in the limb different community who are friends that I admire & respect. So this is just my humble perspective and the experience that I went through in dating after my limb loss. To say I was self-conscious about my new body image would be a HUGE understatement! I was afraid, and physically ill, when I thought about going out in public right after my surgery and I didn’t want to be rejected. But I made a decision that I wasn’t going to hide for the rest of my life, swallowed my fear, and put myself out there. It was brutal at first, and I wore my signature Oakley sunglasses as my defense mechanism & to watch people watch me. It was quite an experiment in human nature and how society reacts to someone who’s “different”. Sad thing was that I realized I was the SAME way when I had all my limbs…. One of the big things that came up for me was “Who’s going to love me looking like this?” I truly believed that IF I ever got married again it was going to be to another amputee, because they would be the only one able to understand and relate to me. I think back on that today and it was a crazy, but totally understandable mind set, and at the time I was Ok with it, resigned to the fact that I didn’t feel worthy or capable of being loved by a totally able-bodied (TAB) woman. I started the dating game again about three months after my surgery. I had put up a profile on Yahoo, chatted on-line with some women, and went out on a few dates, ALWAYS telling them before we met that I was an amputee and if they weren’t comfortable with that we didn’t have to go out on the date. Surprisingly, none of them turned me down to meet, though I was really nervous about how they’d react to my arm & prosthetic. I didn’t, however, make a love connection, but my confidence began to grow and though I still believed I’d end up with an amputee spouse, I kept dating throughout the next few months. In April 2005, not even a year after my amputation, God sent me my angel. We met on-line, she IM’d me through Yahoo, but had no profile or picture, which made me a little hesitant to respond. So, I let the message sit for about 15 minutes and I had this overwhelming feeling that I should reply. So I did. And for the next three hours we talked on-line, followed by an hour on the phone, and an agreement to meet the next night at Applebee’s for dinner, with the caveat about my arm, which she brushed aside with an “I don’t care about that” The next night we met at the allotted time and proceeded to talk at three different restaurants (we kept closing places down), and in my truck, for the next 12 hours! Needless to say, the rest is history. Shawn & I were engaged by Thanksgiving and eloped to Vegas in January of 2006 to tie the knot! Shawn NEVER once treated me like I was different. She was curious & asked many questions but treated me like I had all my limbs. Though I was able to get the sympathy treatment for awhile, she learned quickly and now says “You’re only handicap when it’s convenient for you” & “If you had two hands you’d be dangerous” We all have different perceptions, feelings, fears, and apprehensions about being “Different”, none of which are insignificant or wrong. Society tells us that we have to be a certain way to be “Normal”. I think that’s a bunch of hooey! I’ve learned that being “Different” is just that, different, not bad. I would encourage people to continue conversations like this and I want to thank Sarah Herron for putting herself out there.   Eric Westover is a below-elbow amputee and the starting Keeper for the U.S. National Amputee Soccer Team. He is an outspoken disability advocate, motivational speaker, blogger, coach, and consultant to the non-profit industry, as well as serving on the board of the Coastal Carolina Fellowship of Christian Athletes & Vice-President of the American Amputee Soccer Association. He is currently working on his first book, A Man & His Nub: Blessing in Disguise, set to be released in 2013.     He is married to his lovely wife, Shawn, and they have two children, Paige (17) and Dylan (14). They live in Myrtle Beach, SC with their two dogs, Tobie & Grace, and their cat, Boo. You can contact Eric at righthookman@gmail.com and follow his blog at shorthandedkeeper.wordpress.com.

 

 

 

 

 

Overcoming Obstacles,  by Rabbi Ari Rosenberg

  The prophet Moses once stood up to the powerful Pharaoh, demanding, “Let my people go!”  (Exodus 7:16).  That’s the part of the story that stands out the most to us.  But my focus is on what Moses had to overcome, in order to confront the Pharaoh in such a manner.  Earlier, Moses pleads with God, “I get tongue-tied, why would the Pharaoh heed me?” (Exodus 6:30).  Moses even begged, “Please, O my Lord, I have never been good with words…I am slow of speech and I am slow of tongue (Exodus 4:10).    These passages have led many Torah Commentators to believe that Moses had a Speech Impediment.  The 11^th Century French Commentator, Rashi, stated in no uncertain terms that he believed Moses was a stutterer.  Rashi’s grandson, the Rashbam, was of the opinion that the difficulty that Moses had, was not disfluency, per se, but rather an inability to be fluent in Egyptian, considering how long he had been away from “home”.  The Rashbam’s Spanish contemporary, Abraham Ibn Ezra, however, held with Rashi, that Moses had difficulty speaking in any language. There is, in fact, an interesting theory that Moses stuttered or stammered or something of the like.  According to legend, baby Moses, growing up in the palace of the Pharaoh, often used to grab Pharaoh’s crown and place it on his own head.  Court viziers prophesized that Moses would one day grow up to usurp all of the Pharaoh’s power.  Some urged the Pharaoh to kill the young Moses, not unlike the way the Sicilian Don Ciccio attempts to kill a young Vito Corleone, in The Godfather.  According to Midrash, the Midian Priest Jethro, who would later become the father-in-law of Moses, persuades the Pharaoh to put young Moses to a test.  A piece of gold and a burning coal are held out to baby Moses, in the belief that if Moses has an understanding of his destiny, then he will “go for the gold”; and if not, “the burning ember”. As a parent, I find the test barbaric, but Pharoah goes for it and baby Moses is put to the test.  He is about to grab the gold, when the angel Gabriel intervenes, unbeknownst to anyone else, to save the life of baby Moses, by shoving his hand towards the burning coal, “so that Moses not only seized the coal, but also put the hand with the coal into his mouth, and burned his tongue.”  So the story goes, “thus Moses became slow of speech and slow of tongue.” Why all this interest in a young Moses with a speech impediment, overcoming obstacles, to exceed expectations, and reach his fullest potential?  If you had not met my son Ezra, who suffers from a speech impediment, you probably would have no idea that I once suffered from a stutter so severe, there were discussions about whether I would ever be able to chant Torah, or even read in English at my Bar Mitzvah.  In my experience, I have yet to meet anyone in the world with a speech impediment more extreme than I had as a child.  My parents remember when I would place my hands on my cheeks as though I could literally force the words out.  It was not uncommon for me to stutter upon every syllable of every word in every sentence. I remember it well.  The words would be in my head.  In fact, the following sentences and paragraphs would be there as well, bottlenecked like Friday traffic on the George Washington Bridge.  Years later, when I was an English major at Rutgers College, I wrote an essay likening my stutter to a film projector in which the image has just melted, and the tape is streaming to a point beyond which it simply cannot pass, while the other side is left flapping in an endless loop. As a young child, when it was most extreme, I learned to live with it.  I taught myself coping mechanisms to help me communicate.  I found that if I could relax myself by taking a deep breath, that could go a long way.  I learned to try to talk more slowly, or better yet, to vary the speed.  If I could convert the syntax of a sentence from active to passive, sometimes that would do the trick.  If I could come up with a different word to convey the same meaning, that could sometimes trick my body into cooperating with my brain. I once heard a story about a boy who stuttered every day of his life until one day he took a class in Spanish.  He discovered that when he translated his thoughts into Spanish, he could speak them without stuttering.  Would you believe that boy majored in Spanish when he went to college, moved to Spain, and never stuttered another day in his life!  That could have been me, only I was terrible in Spanish.  However, I did find that I stuttered less in Hebrew. As a child, I loved Hebrew School.  In public school, I was short.  In Hebrew School, I was tall.  In public school, I might be picked last for kick ball.  In Hebrew school, they considered me an athlete.  In public school, I was an awkward ethnic looking kid with curly hair.  In Hebrew School, I was a good looking Jew. In public school, I could barely get a word out.  In Hebrew School, I was like a Hebrew Jedi Master.  Surely, my positive experience in Hebrew School, helped me to overcome the unlikeliness that someone with such difficulty speaking would ultimately become a public speaker by profession. People often ask me how I overcame my difficulty speaking.  I had speech therapists, but the fact of the matter is that they weren’t very helpful to me at the time.  They could teach me the tools that would help me have more control over my ability to communicate.  However, the overriding issue I had was psychological.  The more anxiety I had about my speech, the less effective the tools.  I liked my therapists, and had a nice rapport with each one of them.  But every time I was pulled out of the classroom to see them I felt more alienated and isolated from my peers, increasing my anxiety, and exacerbating my disfluency. In all honesty, I lost my stutter, when I became comfortable in my own skin, confident that I too must serve a purpose in this world, and comforted by the fact that all people are created in the image of God, and so certainly there couldn’t be anything inherently wrong with me.  In fact, I was just fine.  Chanting Torah on my Bar Mitzvah didn’t take quite the same courage it took Moses to proclaim “Let my people go!” to the Pharaoh, and to the world.  However, my Bar Mitzvah was a remarkable achievement for someone like me, and it played no small part in helping me become who I am today.   I was inspired to write this for a sermon I delivered this past week after reading the donthideitflauntit.com blog of Meg Zucker, who defines herself as a wife, mother to three children, lawyer, and woman who happened to be born with ectrodactyly. Although Meg may have seemingly had the misfortune of being born with only one finger on each hand, and only one toe on each foot, she was endowed with the good fortune of a perfectly healthy heart, the warmth of a kind soul, and the positive can-do entrepreneurial spirit of success.  In reflecting on her life, Meg says “My life’s blessing is the following:  I have a distinctive insight into how each and every one of us (and our children) have traits that make us unique and different.”  She notes that some of us must wear our differences on our sleeves, while others can try to bury them. Moses could not bury his differences.  He would have been considered a Hebrew in the eyes of the Egyptians, an Egyptian in the eyes of the Hebrews, and perhaps an outcast in the eyes of some who lacked the discernment to overlook his speech challenges.  However, we must admire Moses, for overcoming all of those challenges, for having confidence in his purpose in this world, and for rising above ignorance and injustice, to reach his fullest potential as an individual, and to lead our ancestors to freedom.  Today, hardly anyone remembers Moses for his speech impediment.  He is defined, instead by his accomplishments.  So may we be inclusive and compassionate in the way we view others, and so may we rise above the obstacles we face, to find our own inner purpose, and our hidden voice.

A New Definition for Perfection   By, Lindsay Moore

2013… sounds spacey.  Like I am somewhat disappointed that I am not like Jane Jetson and can jump in and get my hair changed and all done up with the press of a button.  Would make things a bit easier for sure  But goodness how grateful I am that we are here. In this moment. Thankful.  Grateful.  Humbled. I have so many “business” posts coming.  Workshop info, Valentine’s day info, End of year stuff, session upon session to share.  But for now, if you will, allow me to take a moment to share a more personal post with you. 2012 brought with it many things for my small world.  I believe that we will fondly recall 2012 as the “year of Racer Lee.”  It was now almost a year ago that we found out he was on his way.  And it was just 5 short months ago that he totally redefined life for me when he made his incredibly GRAND entrance, 6 weeks early.  He started teaching me lessons before I even had him in my arms.  Lessons that I desperately needed to learn.  Like no matter how much I plan things in my life that sometimes life has its’ own plan for me.  He taught me to slow down, or at least is attempting to. You would think that fifth baby – he is going to be the most “go with the flow” of the bunch – and he is, don’t get me wrong.  I cannot say enough about how amazing of a baby he is.  But he can be quite opinionated at times.  Like when he wants to lie down.  In a bed.  With me.  I’m paying attention.  He wants me to pay attention.  I am forever grateful. I have written and rewritten this blog post in my head so many times.  Should I write it?  Should I share it with the whole wide {web} world?  Ultimately I have decided it is time to share.  I have read so many blogs from mothers about their children, their obstacles, and just their life that were so inspiring to me.  Stories that allowed me to cry with them.  To laugh with them.  To learn through them.  Could it be possible that my own story could help someone out there?  I believe it could. You see, Racer was born with something called symbrachydachtyly.  His left hand has only a thumb and 2 fingers, and a nubbin that would have been the other 2 fingers.  Think of doing “I Love You” in sign language and that is my babies hand.   {Pretty amazing, right?  To have your child always telling you and the world that they love them?} The first hour was the scariest of my life.  Not only were we dealing with a preemie who they rushed off from me faster than I could have ever been prepared for, but now we were dealing with such a big unknown.  Did they miss something else?  Is he ok?  How could this happen?  So many questions with absolutely no answers for what seemed like an eternity.  Within an hour we had some answers.  It was just his hand.  Everything else looked fine.  He needed to be in the NICU, but that was to be expected with a 33 weeker.  He was perfect. We spent the next few hours {and days} researching.  I learned more than I ever thought I would about hands.  There is nothing genetic about symbrachydachtyly.  It was nothing we did or didn’t do.  It is one of those things that just happens and no one knows why.  He will have to have at least 2 surgeries starting in March to separate his fingers as they are webbed, but after that he will not need anything else. I remember having a moment of peace in the middle of the night.  We can do this.  He is going to be absolutely fine.  The focus then was on the four other precious babies that were waiting not so patiently to meet their new baby brother.  They came to the hospital that next day.  We told them all what was going on and what to expect before we headed to the NICU.  All of them were not even phased by our explanation to them.  They saw him and loved every little tiny inch of him.  Immediately.  They held both his hands.  They were so amazing.  It was then that it was confirmed.  He is going to be absolutely fine.  We are going to be fine. Now we just had to focus on getting him out of the hospital.  Doing all the things that happen with preemies.  Get him off the oxygen.  Get him off the IVs.  Get him to eat.  Lose the NG tube.  Get him home.  It all happened when he was ready for it to.  Again, with his lessons for me. Then the long explanations to people.  I felt like I needed to tell everyone in person.  I didn’t want for anyone to hear anything other than what I wanted them to hear.  I wanted them to know that we were ok.  I wanted them to hear it in the tone in my voice.  For some reason I only thought that this could come from us. The first phone calls were the hardest.  How do you start that conversation?  They were some of the most important for me though.  Most of them I didn’t make it very far into it without tears.  I didn’t know what to say and add to that the fact I had just gone through a wrenching 2 week period in the hospital with so many unknowns – I was a wreck.  I was ok with what we were dealing with as far as his hand was concerned – well – as ok as I could be. I am a very positive person, but let’s face it, no one can go through what we went through and not have moments of just pure confusion and heartbreak.  But ultimately when life gives you moments like these I firmly believe that so much of your experience is based on how you react.  There was no way I was going to let something like this take away the joy of this perfect, precious, little boy. It didn’t take long before the conversations became rehearsed I felt.  I dreaded them.  Here I had this absolutely perfect, beautiful little boy that everyone wanted to just oogle over and I felt like I had to explain all about what was happening, because what if I didn’t explain – would they think I was hiding it?  This is when I made the best decision I could have. Facebook. You see, it wasn’t only hard on me when I had to tell people.  How does one react to this news?  I was taking for granted the fact that I had time to have dealt with what was now our normal, but to others this was all a shock.  I can only imagine that it wasn’t easy being on the other end of the phone.  Trying to be strong for me but yet being heartbroken at the same time.  Facebook allowed me to share and people to read and react in whatever way they needed to. I was able to share with friends, family, colleagues, and the like about his hand… with about 300 characters.  To say that was freeing is an understatement.  To be able to walk into a place filled with people that hadn’t seen him yet but to not have to feel like I had to explain anything with my speech was so wonderful.  I felt like we could totally focus on how absolutely perfect he is.  And we did. All of a sudden so many of my friends had stories for me.  Incredibly successful people they had known with something similar.  So many wonderful stories to hear.  And one of my dear friends sent me this… “So yesterday I told my girls about Racer’s fingers. Their response was “that’s okay, he will still be able to do anything he wants”! So on we went with our day. Well, this morning I saw one of the girls with masking tape and didn’t think much of it. She then came out and asked me to throw a squishy ball to her, little did I know that she had her fingers taped so she could be like Racer and show me that he will still be able to catch a ball! Well there you have it, through the eyes of a 6 year old, he can do it all.” My.  Heart.  Is.  Full. Do I worry that he will face people in big and small form that will not think he is so perfect?  Yes. Do I believe they will eat their own words after getting to know him?  Yes. Do I worry that I might be too protective at times?  Yes. Do I think he was born into the absolute PERFECT family for him?  Yes. Do I believe that he is making me a better person?  Yes. Why now am I choosing to share this?  Well, my beautiful, inspiring daughter said one simple thing to me that made every bell and whistle go off in my world.  We were taking pictures and I was arranging them all.  When asking Justin to hold his hand, Avery’s question in the most sweet, soft voice was “Why are you trying to hide his hand?  It is a part of him.”  I could have fallen over when she said that. I haven’t posted pictures that showed his hand.  In my mind I was trying to protect him.  I hated the thought that someone would look at him with anything other than total adoration.  I did not want his hand, that I love with all of my being, to define him to someone else.  It is our normal.  But for it to be everyone else’s normal, I cannot hide it.  My precious daughter taught me a lesson that day that she will never know the value of. This made me realize that it was time to share our story.  In some ways it is more freeing than ever.  Even if only 1 person reads this, I put it out there.  It is “live”. So, you see, 2012 was by all means the “year of Racer Lee” in our house.  He is teaching us lessons we all need to learn.  Lessons about life, love and acceptance. And we are all better because of it. My thoughts moving forward for 2013… To love more.  This covers the spectrum for me.  Family.  Friends.  Business.  It has been more evident than ever for me that I must love what I am doing.  If it feeds my soul then it will feed other people’s souls.  My business is centered around life and my own life needs for me to hone in on what speaks to me the most.  It is not an easy clear cut answer for me, but it is a question that I am embracing.  The answer will allow me to love even more.  It is time to focus on what I love. To live in the moment a bit more.  This is on everyone’s list, right?  I don’t expect to be living in the moment every minute of every day.  I mean, who wants to relish washing dirty dishes or packing four lunches 5 nights a week?!?  But I want to more than I am now.  I am taking on a 365 challenge to help with this.  One of those picture a day sort of things, but incorporating my JOY project that I had started before.  If you want to follow along, comment below.  I would love to follow you as well.  I may post some here, some on instagram,  follow me @fabulousoccasions …. who knows.  But I am going to do it.  I am 3 days in.  (I haven’t posted them yet but have taken them!  HA!)  Join me. To actually learn from 2012.  To take these lessons that I have been taught and actually LEARN from them.  To incorporate them into our lives.  To love.  To live.  To slow down. Jeremy put it so wisely when he said  ”Each year, whatever our other resolutions about weight, money, love, or anything else, we get the same opportunity to promise to ourselves and others to be wiser, gentler, more humane, more effective. Or simply, better.” I want to be better. I thank every person that has walked through my door, both in 2012 and for all the years prior to that.  For welcoming me into your lives.  For coming in as a client and leaving as a friend.  My world is so much fuller because of you. My wish for all of you in this new year is that love fill your hearts, laughter fill your homes and peace overwhelmingly fill your souls. Happy 2013, my friends!  These 5 people and their amazing daddy are my life.  And, I truly believe that no matter where I am, as long as I’m with them, I am home.

 

 

 

 

 

 

 

It’s All But Numbers, by Max

There is an expression, “Age is but a number.” Well yes, that is true. However, by that logic birthdays are but numbers, time is but a number, years are but a number, even YOU are but a number (based on social security numbers). My name is Max, I am 15 years old, born the year 1997, 6 weeks early, and I am in grade 10. I am 5 foot 7 inches, play 1 sport and 6 instruments. There, 7 numbers that can describe an average person in just a sentence or two. Lately, there are another few numbers that I am not so proud of. No, not grades and IQ. Weight and BMI. This quarter in fitness class, we have to do testing to see how “fit” we are. We test flexibility, endurance, heart rate and much more. We had to measure height and weight. I made sure that no one else could see what my weight was because I am so insecure. Here is the reason why. Growing up, I was never as skinny as my friends and that annoyed me. I couldn’t understand why all my friends seemed to be so athletic and “fit” and I just wasn’t. I was never really into sports. Yeah, I played soccer for 2 years when I was little, but who doesn’t? I thought something was wrong with me due to the fact that I was 6 weeks early. Was it baby fat? Or was it an unhealthy lifestyle on my behalf as a child? I was an active child; don’t get me wrong, just not “fit.” Around the end of 8^th grade, I decided to make a change. A lifestyle change, it might not have been apparent to those around me, but I started to change. I worked myself harder in swim practice, to the point where I went back to an old team to get harder practices. I also did ab workouts in my room at night. I decided that I wanted to look better and be more “fit” than before. This worked for a while. Family would come over and say, “Max, you look great! You look like you are losing weight!” and other things of that nature. Yet, I somehow was never truly satisfied, almost like those compliments were out of pity. In September of 2011 I started as a freshman in a new High School, in a completely new district. I got away from the kids who made fun of me growing up. It was a fresh start for someone who needed it. I bonded very quickly with a lot of people. I could not have been happier. Besides my few good friends in my hometown, I really felt like I had friends who would truly be there for me no matter what. I love my few theatrical friends back in my hometown (you know who you are), but those at my school, I really got close to. I am currently a sophomore, and although I have kept in touch with old friends, there is one friend who I am particularly close with.  One evening we were texting, and somehow body image came up. I mentioned how I hate my appearance and I ALWAYS have and probably ALWAYS will. He responded, “Stop it you’re fine, great!” Yes, this made me feel somewhat better, but not fully. My friend then confessed that he was not always satisfied with his own appearance–this came as a shock to me.  This experience made me realize how fortunate I am to be surrounded by important people who are there for me, through thick and thin. Through all of this, I have learned that being fit doesn’t always mean that you look like the guy on the front of an Abercrombie or Hollister shopping bag. If you think that numbers measure how “fit” someone is, then I am sorry because it’s wrong. My BMI of 31 might tell me I am obese, but for those who know me, I surely am not. I am a hard-working swimmer, and I don’t have the stereotypical “swimmer’s body.” But who cares?   What matters to me most:  I appreciate the continuous support from my great friends, and my family (especially my parents) who have been a real source of inspiration and motivation. Lastly–Meg Zucker:  Thank you for being a true inspiration.  I never would have even considered writing about this if it wasn’t for you. “Be who you are and say what you feel because those who mind don’t matter and those who matter don’t mind,”-Dr. Seuss

 

 

 

 

 

 

 

Vision, Understanding and Grace              by, Nick Stabile

One warm summer afternoon on a family vacation on the east coast my 4 year old daughter picks up a whiffle ball bat and we begin pitching and hitting. She is crushing 40% of them and has never touched a bat in her life. I was so amazed and ran inside to get my wife to pitch and I started snapping pictures. The images were magical. Her stance was perfect, her balance just right, knees bent, bat poised to strike. As I looked closer I saw this determined face with a wrinkled brow and one eye closed. Almost like a person trying to shoot a gun. It was such a cute image. I love it and I look at it often, admiring my little girl. Weeks went by and we continued to practice hitting and she did that face again. Interesting. So cute. About a week later I noticed she was making that face while she was reading, coloring, and watching TV. Now I’m on high alert. I pick up a magazine and ask her to show me where the ‘W’ on the page was. Squinting, she finds it. As we continued, her left eye starts wondering inward toward her nose. That’s it, off to the eye doctor. Sure enough we find out that Ella Grace has two issues, far-sightedness and Amblyopia (lazy eye) or crossing of the weaker eye. A week later we are back in the doctor’s office picking up her new glasses. She will have to wear them for minimum a year, and possibly a patch to strengthen the weaker eye. Her whole aura seemed to change. She was vulnerable, different, and now had to deal with a “thing.” I had become vicious about wanting to protect her, wanting to strangle the first kid who said “4 eyes.” Nobody did. Not one person. In fact everyone told her how beautiful she was. Friends and strangers encouraged her, complimented her on her choice of glasses. Parents were AMAZING and so were their kids. Now I know this is not always the norm but for some reason my little Ella has had amazing support. Maybe it’s just the way she wears them. Maybe it’s her own confidence or courage or self esteem that elevates the reactions around her. Maybe it’s just a state of mind. Humm. Maybe that is MY lesson in all of this. It’s not always been such an easy transition, the other day she woke and started to cry, she didn’t want to wear them anymore. We talked about how important the glasses are and how this should only be temporary, a year or two. My feelings of sadness about her having an eye condition similar to mine come and go. But then I remembered, “change my state of mind about it!” Accept it as a blessing and just another road in our journey together. Anyway, I love my little girl more than anything. She’s taught me so much in her short stint on planet earth: compassion, and understanding certainly, but more importantly, how one’s state of mind can change everything. And finally, she is batting 80%, now that she can see.

 

 

 

 

 

 

 

 

 

Nick Stabile is a Colorado native who has been working in Los Angeles since 1995. He is a graduate of the National Theatre Conservatory where he earned his MFA in Acting and has his BFA from Colorado State University. His first break in Los Angeles was when Aaron Spelling cast him as a series regular on Sunset Beach which aired on NBC.  Following that Nick was cast in the lead role of the horror cult classic Bride of Chucky. His career includes recurring and guest starring roles on Saving Grace, Without a Trace, Saints and Sinners, CSI Miami, Half and Half, Popular Dawson’s Creek, Step by Step Passions, and Aaron Spelling’s Sunset Beach. He was seen most recently recurring on NBC’s Days of Our Lives creating havoc for Bo and Hope. Portraying Dennis Wilson in the ABC mini-series “The Beach Boys an American Family” was one of his favorite roles to date. Last summer he played Captain Taylor opposite Obba Babatunde in Soldiers Play and Uncle Peck from the pulitzer prizing winning play How I Learned to Drive. His most important role to date, has been the role of Husband to Tricia Small Stabile and Father to both Ella and Ava. Those reviews are still pending but it’s looking pretty good. 

 

From Fear to Free  by, Katie Memmel

Thank you, Meg, for asking me to write a guest blog. You are a truly inspirational lady, and your support means so much… In the early hours of December 3, 1985, my journey into motherhood began. When the doctor proclaimed the traditional, “It’s a boy!” my husband, Todd, and I felt emotions most new parents feel: exhaustion, exhilaration, happiness, fear, and deep joy. But also add to our list: confusion, disbelief, and fear (again) – not just the normal fear of becoming parents, but a real fear of how our new baby’s life might turn out. There, in the delivery room, we saw our baby boy for the first time, and he was missing his left forearm and hand. Todd and I named our son Anthony – Anthony Joseph Memmel – “Tony,” for short.  The pre-natal books I’d read hadn’t prepared me for our new reality. Through the hours and days that followed, I experienced new-parent worries, and asked questions I’d never anticipated: Would Anthony play sports? How about music? What about friends or dating? I had Anthony’s life mapped out in one of the bleakest scenarios one could imagine. I cried. And I prayed. My husband possessed more of an it is what it is mentality, viewing things more optimistically than me, thank God!  Together, Todd and I balanced our feelings, rolled up our parental sleeves, and began our ‘mom and dad’ adventures. Sure, I’d had my doubts, but I put them all aside. Our new life wasn’t about me – not anymore. I focused solely on raising a happy, well-adjusted, independent and confident child. We loved Tony, but cut him absolutely no slack. Whatever other kids his age were doing, I insisted he try. Tony amazed us every day with what he could do. Unlike the dim scenarios I’d originally imagined, Tony became his own fabulous person. He accepted that he had one arm, and it didn’t seem to bother him – at all. He didn’t want to be a good one-arm anything. He desired to be good at whatever he chose to do. Period! Soccer, baseball, music – he worked hard and played hard, figuring out life on his own terms – often with humor. Yet, when he announced to his dad and me that he wanted to play the guitar, I admit that we felt a bit thrown. We’d thought trumpet was a good fit. He gripped the instrument with one hand, and fingered the notes with the same hand. Never in our wildest dreams did we think he’d be able to play something as two-handed as the guitar. We actually told him so. But rather than doubt, we challenged him with a deal. “If you raise half the money for a new guitar, we’ll pop for the other half.” Perhaps if he felt ownership to his wants/desires, he’d take his decision seriously. To our surprise, Tony accepted our deal and never looked back. Even at age 13, he seemed to know what he wanted, and kept his eye on that prize. Not only did Tony learn to play the guitar, he excelled at it. After graduating from the University of Wisconsin-Oshkosh with a Bachelors of Music degree, he now works as an accomplished musician/singer/songwriter. Along with his wife, Lesleigh (who is lovely), they travel the country extensively, sharing his music. Through the Lucky Fin Project, Hands Down, Helping Hands, etc., he has met so many families of children (and adults) with limb differences. He always brings a warm smile and offers words of encouragement. “Work hard at your craft – if you really want to do something, you can accomplish it…” So, on December 3, as I celebrate my son’s birthday, I reflect back on so many things that have happened in our lives. My initial maternal worries and questions have been answered. And I thank God for all the experiences. Happy Birthday, Tony! Katie Kolberg Memmel is the author of the newly-released, “Five Fingers, Ten Toes – A Mother’s Story of Raising a Child Born With a Limb Difference.” It is available through Amazon as both a Kindle download and a paperback.   http://www.amazon.com/s/ref=nb_sb_ss_i_0_9?url=search-alias%3Dstripbooks&field-keywords=katie+kolberg+memmel&sprefix=katie+kol%2Cstripbooks%2C343 www.tonymemmel.com www.katiekolbergmemmel.com

Because I’m Worth It   By, Amanda Trigg

It first appeared in middle school, a single, almost unnoticeable grey hair at my hairline, immediately over my right eye.  It seemed harmless, almost quirky and cute.   In the following decade, a legion of other grey hairs joined this one.  Being enamored of all lotions and potions, I seized the opportunity to start coloring my hair to hide the grey.   I enjoyed changing my hair color to various shades of brown, auburn, red and once, accidentally, violet.  I used home products and frequented the salon as well.  My collection of specialized shampoos, conditioners, mousses, gels and sprays for color-treated hair took over my bathroom cabinet.  As the commercials repeatedly told me, I was “worth it.” During pregnancy, I eschewed hair color based upon the prevailing belief that it could be harmful.   At the end of my pregnancy, my hair was mostly silver with a few inches of trailing brown hair.  One day, when I was in Court representing a client seeking custody of his daughter, a Judge interrupted proceedings to sincerely ask me where I got my hair so beautifully highlighted.  In retrospect, I should have taken the hint, that there was beauty to be had, but instead, promptly after the birth of my son, I raced to erase the grey again.   Societal norms told me that that a thirty-something woman should not have grey hair but instead, should be a blonde, a brunette or a red head.   I thoughtlessly aimed to follow that norm. Then, on the eve of a business trip in 2010, panic seized me.  My grey roots were showing and I could not imagine appearing among my colleagues in such an unkempt state.   Without any regard for other tasks that needed to be finished before my departure, I rushed to deal with my hair.  When the panic had cleared, the absurdity of my behavior sunk in.   The absurdity came not from my latest decision to prioritize a cosmetic procedure but rather, from the time, aggravation and funds that had been dedicated to my hair for so many years.   At the age of 40, with grey hair firmly rooted on my head, I was fighting a battle that I could not win.  No amount of hair color or money or time was going to restore my natural color from grey to brown. Some people define insanity as doing the same thing repeatedly and hoping for a different result.  My hair stylist likely thought I was insane when I marched into the salon and instructed him to crop my shoulder-length hair close to my head, leaving just a cap of curls.  My logic was that it would be easier to grow out the dyed hair if there was less of it.   The stylist objected and tried to talk me out of it, claiming that grey hair would “age” me and that I might not like the texture of untreated tresses.  I refused to be dissuaded and he, of course, gave in. Over the following six months, the grey grew in and acquaintances offered back handed compliments about how my hair looked good to them, but they could never let their own natural color grow in.   My own mother was (and remains) horrified by my resolution to accept this physical characteristic of mine that most other people constantly fight to hide.   My pride in my decision kept pace with the growth of my hair.  After years of being a slave to hair color, I felt liberated and confident in my decision to embrace this natural and genuine physical characteristic of mine.   Now, two and one half years later, my real hair color is a curly mess of dark brown, grey, silver and white.   Instead of a cabinet full of products for color treated hair, I have a stash of products for silver curls. Instead of resentful hours at the salon, I enjoy positive reinforcement from strangers who openly admire my hair color and, I like to believe, admire the woman who flaunts it.

 

 

 

 

 

 

 

Celebrating Adoption,  By Julie Fisher

I am a big believer in the flaunt. It works for me because I have always thought –and taught– that honesty is best, as a first grade teacher, as a school leader, and now as a mom.  It is an important mantra for me.  I only hoped that my daughters would agree. You see, my family is different. And those differences are front and center for all to see. There’s no hiding it. In our family of five, three of us are pale caucasians and two of us have darker skin tones.  These differences exist because two of our three beautiful daughters were adopted from Guatemala.  This is a fact that we do not try to hide.  We are proud of it.  We flaunt it. A few years ago, after we adopted for the first time, a colleague approached me and asked in a hushed tone if it would be okay to ask me and my husband some questions about adoption because she was considering adopting a child. I replied enthusiastically that adoption is one of our favorite topics.  She was relieved to hear that we would be happy to talk about it all day! As it turns out, others talk about it also, whether you want them to or not!  All the reading I had done about adoption cited stories of obtuse strangers approaching others in the mall and asking all sorts of questions.  It turns out this really happens.  Here are some that I’ve gotten:   “Is that your real daughter?” “Where is your daughter from?” “Are you their mother?” “Are they sisters?” The wise words of advice given by adoption professionals are helpful and they teach that you have a choice in how you respond. You can share information openly; you can choose to educate people about adoption; or you can choose to keep your personal information private. I firmly believe that when children are taught openly and honestly about their adoption story, it is possible to help them develop great pride and confidence–just as a biological child learns to tell his or her story by listening to their parents retell the story with happiness and excitement. From the point of their adoption, we spoke honestly and openly with our girls about their births, their early lives and their journey into our family.  Last year in first grade, our 7-year-old daughter gave a presentation to her class about being adopted from Guatemala. She dressed in native garb, showed pictures from her country of birth and told the story of her adoption. For many of the children in her class it was their very first time learning about adoption. The next day the teacher called us and told us there was “a problem.”  Of course, our hearts dropped and we anxiously waited to hear what had occurred.  You could almost hear her smile audibly over the phone when she said that she had heard from a few parents who said that their children came home upset saying that they wish THEY had been adopted like our daughter. Our daughter had shared her story with such pride that others didn’t see anything shameful or embarrassing; in fact, they saw someone who had great pride in her difference and a great ability to share it openly–so much so that they apparently felt envious. I recently read an intriguing quote that aptly summed up the choice you make between hiding your unique story or celebrating it.  Michael Reagan once said, “My adoption was treated as a celebration.”  Can you imagine the difference children feel when their differences are embraced openly and they are proactively taught not to hide their “story” or difference from others? So, yes, our family looks different. We celebrate those differences and we openly share and affirm our unique story of how we became a family.   7 Ways to Celebrate Adoption:

1. Answer questions from your children openly and honestly. Teach them to do the same when they are ready.

 

1. Use questions and comments from others (even embarrassing ones) as an opportunity to teach about adoption.

 

1. Celebrate special days such as “Gotcha Day” or “Family Day” or “Coming Home Day.” Cakes are a big hit!

 

1. Tell the story of how each individual came into your family with openness and respect–and celebration (biological or through adoption, surrogacy, etc.). Include others in your celebration (grandparents, friends, neighbors).

 

1. Teach children to be proud to share their story with others such as classmates, teachers, and friends.

 

•  Teach your children how to respond kindly and firmly to questions or comments that might be negative or hurtful, but most likely just show a lack of understanding of adoption (e.g.“Is that your REAL mom?”).

 

• Read books and listen to music that celebrate adoption and reflect your family’s unique story, such as Happy Adoption Day by John McCutcheon or  We Belong Together; A Book About Adoption and Families by Todd Parr.

 

 

 

 

 

 

 

 

Flaunt It I Shall!  By, Beth Lax

I am doing my best to help my kids develop good body images for themselves.  I also try to lead by example.  I don’t diet.  Instead, we eat healthfully.  They see me work out regularly.  Last year, they watched me train for and then complete my first triathlon.  Don’t get me wrong, I don’t deprive myself of junk food and I don’t have flat abs.  But “athletic” and “healthy” do not equate to skinny and I want my children to know that, despite the images they see in the media.  “Treat your body well and be proud of it.”  That’s my message.  I can really talk the talk. Then, in February 2012, came the opportunity to walk the walk.  My gym sent me a survey about the difficulty in finding the perfect sports bra.  I answered it candidly (it should hold me in so that I neither smack myself in the face nor trip while running) and the next thing I knew I was invited to participate in an upcoming article in SELF magazine.  In a sports bra.  Without a shirt.  Gulp.  My mid-section had not seen daylight since my first honeymoon in 1994.  And there was much less of it then.  And even then I thought it should be smaller.  I was seriously considering declining the offer. But then I realized that the only reason I did not want to bare my midriff to the world was the very reason I feel like I have to work so hard to ensure that my kids have positive body images.  Maybe if there were more women in magazines without rock hard abs then fewer girls would expect to have them?  So, I took a deep breath and did what I often do when I find myself at a crossroads: I conjured up a conversation with my sister-from-another-mother, Meg Zucker.  She told me: “Don’t hide it, flaunt it!”  So, I did. A week later, I was at the offices of SELF magazine for my fitting.  The bra expert, LaJean Lawson, fitted me into quite a piece of armor.  It was big, comfortable and held me in.  When the wardrobe lady came in and saw me jumping up and down in the conference room, taking the Enell bra for a test drive, so to speak, she looked confused.  “That doesn’t look like the kind of bra you would work out in without a shirt.”  I looked even more confused.  “Does this look like the kind of BODY that would work out without a shirt on?”  We all chucked.  There was discussion about what kind of tank top to bring to the shoot the following week.   I was relieved. I was even more relieved to see several tank tops hanging on a rack when I arrived at the shoot.  I was less relieved when no one seemed to be making any moves to put one on me.  They told me they admired my “body confidence.”  Either they mistook my good posture for confidence or that was their nice way of saying:  “Gee, if I had that body I’d never agree to model a bra in a national magazine.”  While I was busy analyzing the comment and wondering if I should just help myself to a tank top, someone ushered me in front of the screen, the wind machine was turned on and I felt my whole attitude shift.  Flaunt it I shall! My body may not look like the ones you usually see in magazines, but you know what?  My body gestated and gave birth to 2 great kids, my body gets up every morning and goes to work, or to the gym, or to coach my daughter’s cheerleading squad, or to stand at the end of the pool and time at my son’s swim meets.  My body has even completed 2 triathlons.  If my biggest complaint is that I don’t like how I look in a bikini then, um, what exactly am I complaining about? Since my photo shoot turning point I am aware that I am more grateful for the things I like about my body and pay less attention to the rest. For example, rather than complaining about my stomach, I am enjoying a new approach to running that is beginning to show results.  As I run more, I will burn some belly fat (old habits die hard).  Or I won’t.  But it doesn’t matter.  My body is strong and capable.  Yes.  Flaunt it, I shall.   READ THE SELF ARTICLE HERE!  http://www.self.com/fitness/2012/05/best-sports-bras-slideshow#slide=19

 

Acceptance, by Loreli Stochaj

I had been teaching first grade for a number of years and a former parent was doing a remarkable thing. Her family was taking in a child from the Dominican Republic who needed surgery on her leg. The child’s leg had not formed correctly and probably needed to be amputated. The parent wanted the child to attend school until she was ready to return home. This was to be about six months. First the parent went to the Board of Education and asked if it was at all possible for this young girl to attend school. The Board Office told her yes but the child would be considered a visiting student and would basically receive no extra help but could come to our school. Let me tell you about this child. Her name was Lupe and she had never really attended school of any sort. Her family was very poor. She spoke only Spanish and she used a crutch. The principal called the first grade teachers into her office to explain the situation. We all had some questions. We all left her office to think about it. After thinking about for about a minute I went back to the principal and said I would love to have Lupe in my class for the rest of the year. I thought everyone could benefit from her being in my class. Before Lupe started in my class my word to the children was acceptance. Accept Lupe for who she is, make her feel welcome, help her to understand English (as we tried to learn Spanish), and just be her friend. First graders are so accepting and kind and generous. I am not sure who benefited the most Lupe, my class, or myself. Sometimes life lessons happen when you least expect them. Lupe taught me that having an open mind and open heart allows for amazing things to happen.

My Life   By, Aviva Drescher

Entering 2nd grade on crutches and a brand new stump, I felt the stares. I hated being different. I was asked by my 2nd grade teacher to tell my class what happened to me that summer. So I went on to explain that I lost my leg while playing on a conveyor-belt when my foot got caught and churned. I had been sleeping over at a friend’s house and we snuck out of the house on her suggestion to ride the machinery. What a mess. I learned early on how fragile life is. Never be a follower I learned at the fragile age of six. People always stared at my leg. In school, around New York City, and of course when I went on the beach in a bathing suit. Children would ask questions all the time. “What happened to your leg?” “What’s that?” I could be in jeans and my bulky knee would show and a new friend would put their hand on my knee and say, “What’s that?” It was a heavy situation to explain and I never wanted people to feel sorry for me. So I had my light answers ready: “Oh, I lost a part of my leg in an accident. I wear a BRACE so that I can walk better.”…. “Part of my leg, brace, walk” sounded much cooler than “stump, prosthesis, fake leg, peg leg and lost leg.” I didn’t wear shorts, skirts, or dresses. I covered it up with pants, boots and long skirts. Adults were overly protective and kind, children were inquisitive and naturally judgmental. I just wanted to be like everyone else and I succeeded. I was captain of my high school volleyball team, dated a hot football player and functioned like a normal teen, college student and young adult. The leg was ALWAYS in the background. I never felt for one minute sorry for myself. I was lucky to be alive and it could have been much worse. This is my approach towards everything. Gratitude. My parents were phenomenal. They successfully treated me like everyone else. They had expectations of responsibility, integrity, and hard work. They encouraged me to ski, ice skate, roller skate, play sports, have boyfriends etc. They did not, thankfully, coddle me. Wearing a prosthesis came easy to me because it was all I knew from the age of six. I have no memory of having two legs. To me, it’s like wearing a pair of glasses. At 26 years old I had elective revisional surgery and amputated my leg further in order to have an abrasion free life and a better looking prosthesis. Finally, I could wear heels!!! Ahh the things we take for granted. Around this time friends of friends who lost their legs would come to me for advice. I discovered an ability to really put people who were going through the process of losing a limb at ease. I put myself out there on a private level. I still kept “the leg” in the background. As I aged, and I became more confident in my own skin, I started helping others more and more. I became a mom (four times) and always referred to my prosthesis to the children as my “special leg.” They only know me wearing a prosthesis and see nothing unusual about it. It is part of who I am. If anything they innately understand that people are different and we must all be fearless and accepting. I had four children, several degrees and had chosen to devote my time to my children and other children who needed prosthetics and emotional support.I worked one on one with new amputees and helped raise money for charity. One day I was handed a contract to do a crazy show called Real Housewives of New York. There was no way that I would EVER be on that ridiculous show with those crazy women. NO WAY. As I thought about it, I saw an opportunity to help others on a large scale. I imagined young/old new amputees seeing me run around with my children and function like everyone else. I decided to take the hit of becoming a caricature (one of those crazy women) in exchange for the ability to help other amputees and physically challenged. Had I been able to watch someone on televison function as an amputee when I was young, I would have grown up with more confidence and less doubt. I wanted to give this visual to others who needed it. Television is a powerful source for visuals. Raising money for my charities was also enhanced through the television platform. When Ramona asked me one hundred questions in the shoe shopping segment I was not rattled. I had spent 35 years answering questions about my leg. I am open and honest and it did not feel offensive to me. To onlookers, she behaved like a child and was insensitive. I would not suggest that she ask those questions to anyone else in a similar predicament. However, I welcomed her questions as I was able to get the information out to viewers through her interrogation. In reality, she did me a favor. The show was cathartic. I was announcing to the world that I wore a prosthesis. It took me 35 years to do that. I have helped so many individuals who reach me through social media outlets and we have raised significant amounts of money for charity. Unfortunately, my leg and phobias, which in reality are in the background of my very busy life, were front row and center on the show. This was disappointing because it undermined who I really was and what I was trying to do. What is done is done. Move on and focus on the positive. One of the hardest parts of my life was seeing my parents sad about my leg. Why were they ever sad? I was perfectly happy! I meet parents today with children facing physical challenges and I tell them that children are resilient creatures who adapt very easily. I beg these parents never to allow their children to see them sweat. It’s like an airplane pilot.. The children are the passengers and the pilots are the parents. If the pilot starts to panic or get upset, you know what happens to the passengers right? Same with children and parents. Parents need to put on a brave front for their children and act as if everything is fine. They need to be models and examples of strength. That way, in my opinion, all will be fine. To all those with physical challenges or any differences at all- I say do your personal best and own it. The race is with yourself.  Life is short and even in the most dire of circumstances, happiness can be achieved. As long as there is breath there is life. Happiness is all about perception. Be grateful for what you have not what is missing. Everyday, I am grateful that I did not die in that machine in 1977. I am grateful to be wearing a prosthesis. It was a gift!

 

 

 

 

 

 

 

 

Hello from London!  By, Susannah Scaroni 

What an amazing couple weeks of firsts this has been. First US paralympic team, first time feeling the roar of an F-15 air force jet, first time putting espresso shots IN my coffee (yes, an espresso machine was tucked safely inside Aaron’s race chair–who would travel without one?), first time in London, first croissant (and second, and third…). It is hard for me to believe all that has happened since we boarded that plane, nearly 3 weeks ago. My surroundings and daily experiences are about as consistent as this English weather. For instance, a week ago today I had greeted the morning with my coach and a few teammates at our routine 6:30am “coffee-time” inside our nice suite at Lakenheath Royal Air force Base. We then would join the rest of our US wheelchair racing team, putting in miles out on the road we shared with the friendly humvee drivers. Finished with training, our day usually consisted of exploring around the base, visiting Starbucks and hitting up the fresh juice bar, “relaxing” video game tournaments that consisted of shooting zombies, and without fail a trip to the BX just in case I had missed something in an aisle the day before. For nine days that atmosphere allowed me to adjust to the six hour time change, acclimate to the mildly cool temperatures, and perhaps most importantly, taught me to look the other direction first when crossing the street. I am so grateful we were able to begin our trip with such an amazing team of support. The base truly provided us with love, encouragement and every else we needed to reach our final level of readiness. And ready we were. As wildly as the wind here blows in a new front, our conditions have drastically changed. Arriving at THE London Paralympic village, we stepped onto the grounds that now house us, our dreams, and everything we have worked for. Instead of camo and fighter jets, I now look out the window to the incredibly massive Olympic stadium, a street lined with flags representing the 166 countries that are competing with their best, and the actual people who are fighting to make their homelands proud. Directly in my view, standing tall in the center of this village is the Paralympic symbol, comprised of 3 agitos which remind us all of the motto “spirit in motion”. A spirit of will and determination to act. This has truly been an unbelievable experience for me. Each time I step into the stadium, brimming with excitement to see my teammates race, I am overtaken by the roar of the crowds. As the athletes hone in on the final curve, arms coming nearly vertical and hammering down with strength and determination, the roaring grows beyond just a sound. It becomes a living being that transfuses into me. My face begins to tingle and my heart pounds. This is the experience of the Paralympics. Never before have I felt as if I were floating there, literally feeling time slow down as every stroke is made in the battle for gold. People have been asking me how it is I can wait so long to finally compete, as my event is the very last. It’s not hard to explain. Each day has served to increase my vigor for competition. Every race I watch, every determined face I see, and each image of pure joy and relief has boosted my longing to take my stand out there. I am beyond grateful to have the opportunity to be present in this beating and thriving existence that is the Paralympics. Well, the waiting was finally over. The day had come.  I have been competing in wheelchair racing for 10 years now, traversed the globe, and been in front of seas of unfamiliar faces. However, none of that mattered as I pushed out of the athlete staging that morning, crossing onto the start line. As we came into view, the crowd went wild. I was instantly overtaken by such intense excitement! Then the moment came. I saw my mom standing across the fence from me, bright eyed, “Team Scaroni” shirt on, and I could no longer hold in my emotions. With a slip of tears, I took a gulp and gave a wave. It was then that my heart understood the hours of work that had gone into her being able to be there, and all for this moment. Right then I knew that no matter what, I wanted to make these people proud. I had an uncontrollable desire to put forth ALL that was within me, to make this a special race.   It sure was a special one. This was my fourth marathon, and nothing like the previous three. The course began with a small two mile loop, then another three 8-mile ones. It was said there were sixty some turns, which is pretty significant to a wheelchair racer, as the act of turning demands careful control of speed–meaning there was a lot of decelerating/accelerating that day. For me, this truly took a toll on my power. However, as my arms began to complain in exhaustion, my mind became my strength…and I spent the rest of the race clinging to this. I didn’t look at how many miles were left, but focused on the fact that THIS was the marathon, EACH stroke was the marathon, and I was there to do a marathon. As I made my way through the final lap, denying my throat the water it so eagerly desired, my eyes were unable to focus, and my arms felt heavier than I could even believe. But I was almost there! When I came around the final round-about, in front of Buckingham Palace, I was cheered on with a roar of “U-S-A”‘s. It was an incredible moment, and from somewhere within my burning arms came a flow of energy and joy. As I came across the finish line, a wave of relief flowed over me, I truly knew that I had left it all out there…I had raced my marathon with ALL that was within me. As a cool towel was placed over my head and fresh water brought into my parched system, I felt so grateful to have had the chance to be there that day, and motivated to continue on a path where I get to make each stroke matter.                                                        

 

 

 

 

 

                     

                                                                               

Bold and Beautiful        by Vidya Anandam                                     

PART 2 OF 2

Phase 3: Phase 3 started out of emptiness and ended in restart of stagnant life. We decided to adopt. At once that emptiness vanished. Life filled itself with imaginations and dreams – all about the prospective new arrival. Who will it be? Has he/she born already?  Is this baby  awaiting our hugs and kisses just as we are doing for him/her?  At this juncture a sudden awakening came to me.   Even if we adopt, we are not going to be normal parents. I am going to get the child just like a ready-made dress / a ready to eat tinned food.  What will be the reaction of the extended family?  That question made me nervous.  Of course a professional counselor at the adoption agency had instructed us that we should put every truth before that child at an earliest possible opportunity and we had decided to adhere it without fail.  But even after telling him/her that truth, preparing it to face that truth, managing its mental strives after that……  ha! I was tired even to think of the ordeal.  I was so much worried about the extended family that for some time I even thought of winding up everything from our present residence as soon as getting the child and moving to an entirely strange place. This worry was not an open one but was reclining at my subconscious mind. But then I started reading Meg’s blog.  All my questions had answers there. All those answers put new questions too….  The first and the foremost one was: Vidya, Have you ever had the real courage to accept your difference?  I got “NO, NO, NO….” 1) I am different; and 2) I had been deceiving myself all the way from phase 1 that I was strong and bold. Merely being ‘a non crier’ is far from being a strong person. How can I say I am bold and strong  if I cannot accept the truth?  Next the question faced me: How can I become really bold? The best way to overcome fear of cold water is to jump into it. I put myself into awkward situations which I had been trying to avoid until then. (I was avoiding meeting the extended family until then. I was reluctant to attend social functions for quite some time just for fearing of facing questions.  At first it seemed to be hard. Soon, it became a  pleasant experience as my heart became as light as a feather.  Interestingly as I began to face the society with bolder and stronger attitude, it became more and more friendly and  more understanding. As I learned to say ‘I haven’t got a child’ with less pain, sympathy turned into respect as though by magic. ALL BECAUSE OF TRUTH AND  THE READINESS TO ACCEPT  IT.   There is nothing simpler than truth, purer than truth, more lovable than truth, more comfortable than truth, and especially NOTHING IS MORE BEAUTIFUL THAN TRUTH.  I am sure, that is why in the ‘ In the Eye of The Beholder’ Meg has admired my beauty even without seeing me. PHASE 4:  Every time I face questions I have to collect my strength to accept the truth. Though I can’t claim that I have mastered it as Meg does, I can say I have come a long way in the continuous process. I will soon excel in PHASE 5: CELEBRATING the difference.  In fact I have started it already. Had I got children normally and immediately after marriage, I would not have realized what a precious gift God has given me (i.e.) My Husband. I would not have enjoyed the depth of his character- his generosity, broad mindedness and unconditional love for me. I suppose the history of mankind itself is full of differences and challenges and can be described  as a never-ending  journey towards perfection.

 

PART 1 OF 2 I am from India.  In my mother tongue, there is a proverb “Are all the digits in our hand identical?” I think there cannot be a better expression for celebrating differences. We know everyone of us are different in some way or other. Some are  explicit differences while some others are invisible- It may be a learning difficulty, IQ deficiency or a psychological disorder. In my case it is childlessness. I think, people with invisible differences are worse affected than those with visible differences. Because in case of a visible difference, physical abilities of the person alone are affected. As far as  invisible differences are concerned, the inner abilities of the person affected are challenged. Man is a creature of mind. (In Sanskrit -  the language in which our scriptures are written, both  the words for Man and Mind are said to be originated from same root word.) So, in my opinion, if his mind loses power his ego becomes damaged. He loses the will power required to overcome his disability or even remains unconscious as to whether he has the will power or not. Phase 1: It started at the end of the first year of marriage. The time granted by our society for having a child ended. (9 months for pregnancy +  a 3 months grace time) Let me first explain something about my character. I am basically affectionate, caring, fun loving, spiritually inclined, bold and strong person with profound sense of humor.. But Bold and strong?  I suspect now whether I have been really strong. Generally, in my society childless people (particularly women) are treated mercilessly. They are constantly irked by heartless judgments. As I had written to Meg earlier in a comment, being childless is not only a disability, it is also a sin. Childless woman are considered to be inauspicious (Fortunately, people in my close circle are kind- hearted and well educated. But the larger society and extended family are not). It is all in the woman’s hands to get rid of the sin. Until she manages to bear a child she has to cry her eyes out all the time. If she doesn’t cry, people readily judge that she is not sincerely trying to get rid of the sin. Can you believe this? As I am ‘bold and strong’ I have never cried.  I believe in the saying “ If we cry for a minute we lose 60 seconds of time granted for smiling” Being a non-crier, I had to face a lot of embarrassing questions like: Are you not bothered about getting a child of your own?  How come you stay unaffected? Are you not aware of medical processes? Every time I faced a question I would boil with rage but restrained myself from reacting since I was ‘strong’. I took medicines for a long time, but in vein. Society (extended family) would have been more understanding and sympathetic during my failures had I cried at least once. But I always hate sympathy. Before I continue, I have to mention a few words about my husband. I have got a gem of a person. He has never complained a word about  the losses he had to face .  Apart from the monetary losses, he also had  to go through a lot of embarrassments, same questions (slightly altered  to suit to a man) and judgments for which he could have blamed me. (Normally men do so in our society) But he has never done so.  Instead, he has been the source of all the solace I needed, cheered me in distress, inspired me to laugh amidst all disappointments and pains. It is another reason for my ability to tolerate all the agonies without crying. Phase 2: My ‘strength  and boldness’ faced a tough time. The Second Phase means the stage where we stopped treatment and stood empty handed,  literally empty handed, with no savings, a lot of dislocations and yet with no child. Life, for me, seemed to be stagnant and empty. That emptiness cannot be described in words. Only childless people can realize it. I began to question myself: Am I really bold and strong?  Does abstaining from crying really amount to courage?  Unfortunately I got a “NO”. I was shocked by that “NO” and I did not accept that “NO”. What is courage/ strength? The plain answer is THE ABILITY TO ACCEPT TRUTH.  Could I accept the truth as such? No, It was harder to face the truth.  For me, life itself seemed to be a total failure. I thought I had failed as a wife- by failing to bear a child for my ever loving husband. You will laugh if I share a strange feeling I had at that time. What would you feeI when you see cockroaches hidden  in your bathroom/ kitchen  have suddenly multiplied in number? Angry? Worried? Irritated?  Felt sick? But I used to feel jealous- jealous of them for their ability to reproduce! Nature has bestowed a power on them which I have been denied by God. To be continued…..

 

 

What They Mean to Me,  by Jessica Spitalnic Brockman  (PART 3 OF 3)

I have become a semi-adoptive mother to a young man from Zimbabwe with Osteogensis Imperfecta.  Several years ago, I rescued a set of books about the Nuremberg Trials from Lynn University.  These books, known as the Blue Series, were sitting in a closet collecting dust and were this close to being thrown away as the library moved towards digitizing.  I rescued them and went on to create with Lynn University something called “Project Nuremberg”, a series of events for Lynn University students and attorneys in our community to study all that is related to the Nuremberg Trials.  One of the professors I work with at Lynn, Martin Phillips, pulled me aside one day and told me the story of Energy Maburutse. Being born in Zimbabwe with disabilities can mean that your culture wants you to die, as was Energy’s case.  Born with a condition that made his bones brittle and his body unable to bear his weight, Energy was raised in a place with disdain and superstitious attitudes towards his condition.  But everything changed when he arrived at a school for children with disabilities at King George VI School for the Disabled in Bulawayo, the only secondary school for the disabled in Zimbabwe.  Beyond his loving mother, rural Zimbabwe had very little of what a young boy with disabilities needed and it is clear that his time at King George was a blessing.  Both his physical needs, with wheelchairs and accessible facilities, and his intellectual needs were met at this school not just with classes in math and science but with music coming into his life and Energy learning to play the marimbas.  And when for a school project, a group of students formed a school band they named Liyana, life changed for all the members of the band when they were discovered by Academy award winning producer and journalist Elinor Burkett.  Inspired by their story, she went on to make the movie iThemba about them all.  Over time, Energy, along with several other band members, had a desire to go to school in America and Elinor was able to secure scholarships for three of the band members. This is how Energy ended up at Lynn University in Boca Raton where I am a rabbi of a large synagogue. And ironically because of the ugliness of the trials that we study at Lynn, a regime that killed not only Jews, but anyone that like Energy was not the Nazi ideal, we came to know each other.  Energy has his mom in Zimbabwe, Elinor is his American mom.  And I am his Boca mom and help with his some of his needs down here. Getting around with someone is a wheelchair opens your eyes to how unfriendly the world can be to someone in a wheelchair.  Aisles are narrow, stores are set up with barriers and occasionally disdainful looks can come your way.  But Energy is seriously one of the most optimistic, easygoing people I have every known.  Nothing fazes him and it is all a miracle, every day, that he is here.  Perhaps because in his culture, he could have not been here.  People with disabilities have been killed in his culture and witch doctors are brought in to figure out the curse that has come to cause someone to look a certain way that is different.  It is a miracle that Energy is here, not just in college, but here, as in here alive on Earth for all the challenges being raised in Zimbabwe brought his way. After I met Meg and her family on line dropping off our children at Camp this past summer, I started following her blog.  From it I realized more importantly a deeper connection that was shared – that if there is someone in your life with any type of disabilit or difference – yourself, your children, your friend, the most beautiful lesson that can be taught is that nothing, absolutely nothing, can hold you back, if you have the right support system around you.  Energy is one of the best marimba players in Zimbabwe and he only started because of the opportunities the staff of his school provided.  Another bad member, Goodwell Nzou, studying at Nazareth College in upstate New York and who lost his leg to a snake bite that went untreated in his tiny village for months, is now one of the most promising students in science because of his exposure to treatment by people that not just took care of his ailing leg that had to be amputated, but because they got him to school in a place where he could begin to thrive.  We come into this world alone but along the way, the people we acquire can bring us the most thorough wholeness we can know.  My disability, though not physical, was not fully understanding the power of optimism, hope, joy and people until I met Energy Maburutse. For more information about Energy, Goodwell and Elinor Burkett’s movie “iThemba” about them see www.loliandrex.com    

Dreams and Miracles    by, Goodwell Nzou (PART 2 of 3) 

It all started in Chitsungo Village in the Zambezi Valley of Zimbabwe, where I was born inside a tiny mud hut with the help of village midwives. I consider this as a humble beginning of greater things and not as a case of an inferior background. Many of my friends boast of their mothers’ giving birth in private maternity wards surrounded by nurses and doctors. But I think to myself.  “The fact that I have a past and am alive in the present means that I have an equally bright future!” I was a normal village boy there; I loved soccer and volleyball and never thought much about the future. Until November 2000, when I was 11 years old, and my brother and I went down to the river for a swim, as we did on so many hot  late afternoons. It was dusk when I was suddenly bitten by a snake. At least I assume it was a snake since nothing else could have left me in such agony or caused my leg to begin swelling so quickly. My brother carried me home, but my parents could not rush me to a clinic because the nearest medical facility was 20 kilometers away and it was already dark. So I spent the whole night in my small bed at home without any medication. Only dawn did my mother and brother gently place me into a wheelbarrow so that they could begin the long journey to help.  For more than a month, they pushed me to clinics on both sides of the border for injections, or carried onto a rural bus to hospitals as nurses drained ounce after ounce of pus from my foot. I wept not just from the pain but from looking at my anklebones, bare and exposed, until, finally, my foot detached itself from my leg. On December 28, when a doctor first mentioned the word amputation, I was almost relieved. But at first, the doctor at the hospital in Harare, where I was finally transported, hesitated to perform the surgery because my parents weren’t there. But they had no money to travel so far to authorize the operation. Forced to become a man almost overnight, I realised that I could not give up; I somehow suddenly knew that I was meant to live and fulfill goals that I couldn’t yet name. I forced the doctors to rid me of my obstacle, my, useless-painful wounded leg. I quickly learned that not everyone considered that I had been brave. My aunt immediately declared that I had become a useless person not even worthy of any education. My heart shattered, but somehow I found the strength not to give up. I perpetually cried and insisted that I go to school until my father gave in and took me to Social Welfare, which provided me with a heavy wooden prosthetic leg. Compared to the titanium limb that I now use, that leg was impossible: heavy and awkward with no joints or springs. But at the time, it was the most precious imaginable possession. By the time I re-entered school, more than a year after my amputation, I had become a determined young man, far distant from the carefree boy from Chitsungo. My aunt’s declaration that I would always be useless rang in my head. I worked extra hard every day. “No disabled child can do anything in life,” she declared once more after she heard that I had applied to continue my education at King George VI School for the Disabled in Bulawayo, the only secondary school for the disabled in Zimbabwe. This one was like The Great Wall of China, standing resolutely between me and my dreams. I now believe in miracles because at the very time that my one aunt was shouting at everyone about me, another aunt told her employer about my problem, and he offered to pay my tuition. By the time I arrived at King George, I was more determined than ever; I would keep going, study medicine and become a doctor to save young people like me. Unfortunately, King George was not exactly the most advanced high school in the country in terms of academics, and by then, the economy of Zimbabwe was collapsing. So there was no Chemistry laboratory at the school; neither was there a Chemistry teacher. The headmistress agreed to find me Physical Science textbooks so that I could teach myself. But I quickly realised that books were not enough. I needed chemicals and a Bunsen burner, fuel and tubes. The administrator was pretty surprised when I asked her to find a way to buy me the things that I needed. But she managed, and a few weeks later, in what had once been a closet, I burnt some copper carbonate in a crucible to see what would happen, the first of scores of experiments I tried on my own, following instructions from whatever textbooks I could find. I did secondary education at King George 2005-2008. I served as deputy head boy in 2006 and as head boy 2007 and 2008. By that time, when I left King George for Christian Brothers College to study physics and chemistry, and  mathematics I do not think anyone – even my aunt – could have stopped me. I had too much to prove; determination had become wired into my soul. I admit that my friends wondered, even made jokes, when I set my alarm to wake up at 2 a.m. so that I could find extra time to study. Or currently, when I volunteer to spend my free time tutoring O-level Math and Integrated Science. And, when I make the time to work with the First Aid club at Christian Brothers College. I know that helping the sick and helping people who reminds me of myself at a younger age is imperative. Proving my aunt wrong is no longer good enough. That emotion has metamorphosed into an internal need to do my best – and be the best.  My dream now is to become a Chemical Engineer and so I’m studying Math, Chemistry, and Physics at Christian Brother College. Many people have insinuated that it is impossible to succeed in University especially regarding my condition and financial status. I definitely know that it is going to be hard and tougher and even more expensive but I use three words to describe all my power, “Thoughts become things.” Or as Napoleon Hill said, “What the mind can conceive and believe, it can achieve”. My strength sorely lies in my tenacity that is my secret. Mine has not been an easy life. Where once I could run and play with other children, I spent most of my youth sitting on the sidelines with a heavy wooden leg that was not even cut to fit me. Where once I imagined being a man who could walk the streets of my capital and be treated with respect, I now know that many people look at me with pity or even fear, thinking that I am cursed. It was my goal that I, the son of a mother and father who can neither read nor write, turns a terrible tragedy into an opportunity. It not for that awful snake, I suspect that I would either be doing nothing in my village, which is what most young men there are doing, or working as a garden boy, as my brother does in Harare.  But the American president Thomas Jefferson once wrote, “When you reach the end of your rope, tie a knot in it and hang on.” I will never let go.  

Yes I Can, by Energy Maburutse (PART 1 OF 3)

I was born doomed to life without achievements. At least that was the thinking from my small village, where almost everyone accepted the traditional belief that disabilities are the result of a curse. Even if I hadn’t been born with bones so brittle that they broke at the first pressure and without the ability to walk, I’m not sure how much I could have achieved if I had remained in my small village, where the fundamental belief was, “We can’t.” It is a village full of illiterate people who think you can achieve only by honoring the ancestors, who then bless you with your desire, or through the spells of witches. I was trapped like a chick in a shell with no chance of being hatched. My mother put the first crack in the shell when she refused to follow the tradition and sent me to school. But even then, I could imagine that I could stretch out my hands to achieve. To my traditional thinking, that was beyond my human power. Then when I was eight I heard the sound of the marimbas. I don’t know why I loved to sound so much, but I kept visiting the marimba club in my school to listen to the seniors practice. “Get out of here you little silly boy!” they shouted. “Can’t you see you are disturbing us? Young kids are not allowed to play the marimbas.” My heart would sink. My dream was to become a member of the marimba club and one day entertains a crowd. Whenever I was alone, I was playing the marimba songs in my imagination. I kept on going back again and again to listen to a marimba player. I persistently showed up until I got accepted into the marimba club. I learnt with passion and it didn’t take much time to show I had a talent. I became the best marimba player in school and when I started my secondary education, I found a bunch of folks with similar dreams. They also believed that nature would not incite us to have dreams unless we also have the possibility to fulfill them. They also had the courage to follow their talent. With the school assistance we managed to form a band, Liyana. We entered numerous competitions and left other contestants shocked when we won and were sent to Europe and then USA. I can’t fully explain the feeling I had the first time I got on a plane, but I can still feel how my heart was filled with joy. The useless little boy, as they used to call me, became the biggest attraction on stage in small and large cities in Europe and America. Back to my little village I became a topic of discussions, an amazement. “How can a disabled person from Zimbabwe share the same table with a white?” people wondered. “How can a disabled person manage to accomplish such big things? There must be a use of spells in this family.” But I new spells had nothing to do with my accomplishments. I alone was responsible for my achievements because I refused to give up my dream. Now I believe even the sky is not the limit, not just in music, that the limit is invisible and lies within my efforts. I now know that I should never listen to those who think they are better than me. I no longer hold to the fundamental mentality from my village that “we can’t.” Now, inside of me, I hear the words: “Yes we can.” Yes, I can.

 

A Star Is Born, by Julie Ross

Eight months ago, my 9-year-old son tearfully shared with me that “his whole life, he had wanted to be a girl”. Pressed by the therapist (who, thank G-d, was in the room with us) to clarify whether he wants to be a girl or is a girl, George immediately replied that he is a girl. And so began a crazy-ass adventure that I never, in a million years, expected to find my child or, frankly, myself, on. To be clear, my husband Rich and I always knew that George (who is now Jessie) was different from not only our older son, but from other kids — male and female alike. With sparkling eyes and a wildly observant and funny personality, he was known by everyone everywhere we went. Never one to shy away from a conversation or situation (particularly if it involved dolls, dresses, wigs or mermaid tails), he captured the attention of anyone he came into contact with. When behaviors that concerned us in preschool and kindergarten — including, but by no means limited to his self portraits (a frequent drawing assignment) consistently depicting a girl in a dress with long, flowing hair — continued with even greater vigor in first, second and third grades. We concluded that he was probably going to grow up to be gay, yet didn’t quite buy it ourselves. He was a boy who greatly appreciated a beautiful girl and what she was wearing. He never met a doll, wig, dress or mermaid tail that he didn’t feel a total compulsion to own — no matter how strongly he had to fight for it. And despite the fact that he was not even slightly effeminate, there were several occasions that he harassed and harangued me for hours on end requesting everything from hair extensions to wigs to dolls. It never added up. And then he asked for (and by “asked for” I mean “demanded”) a pierced ear. Our initial reaction to the earring request was that “little boys don’t wear earrings”, but he was having none of it. As he obsessively pursued this request, it became increasingly clear that it was not a desire, but a need. Since growing out his traditional little boy haircut was going to take some serious time (we had agreed to allow him to grow his hair — anything to stop hearing about hair extensions or wigs), a single pierced ear seemed an easy enough allowance in hopes of placating him. Of significant note was, just prior (and I mean as the alcohol was being rubbed across his lobe) to the piercing, he implored the piercer to be sure to do it in the ear that doesn’t mean “gay”… clearly he was building up the courage to tell us something, we just didn’t know it yet. It was not long after the newly-pierced ear that our confusion was put to rest and we were told of George’s truth. It took me about a minute and a half to absorb what he was saying and to give myself a virtual whack upside the head. It all started to make sense now, except for the part when I told myself that this happens to other families — not mine. Wrong. We continued along with our “if-it-was-ever-normal-it-isn’t-now” lives for a few weeks, noticing a huge change in our child’s mood and temperament. Clearly, an enormous weight had been lifted. And then there came what we refer to as “the article”. It was a Sunday in December, which also happened to be George’s tenth birthday. On the front page of The Boston Globe there was an article about identical twin boys, one of whom had identified as transgender and was now living fully as a girl. I, not surprisingly, was raptly reading the story when George came up behind me, noticed the photo and asked who they were. Upon telling him he responded, with his mouth agape, “You mean I’m not the only one?” It was at that moment that Jessie was born, moved in and has since made herself comfortable in my house. The following day, I dropped George off at school and told him to be cool; we would come up with a plan. He was cool. Until 11 a.m. (not bad considering the school day starts at 8 a.m.), when he simply could not keep the truth to himself and, without fanfare or drama, told one of his teachers about his “secret”. The cat, ladies and gentlemen, was out of the bag. The next day, as it happened, was pajama day and, after a hasty, late night trip to Target, I successfully outfitted my “son” in head-to-toe pink, purple and green polka dotted pajamas in which he ran (not walked) into school with zero hesitation and without so much as a glance over his shoulder for support. Jessie had been waiting her whole life for this day. I almost wonder if that was why she felt the need to share when she did… just to ensure the perfect little girl pajama ensemble for what will likely (hopefully) be her last school sanctioned pajama day ever. Since those first crazy days, we have had her second ear pierced and have had countless meetings, discussions, questions, plans and concerns hurled in our direction. At times we have laid low: mostly at the beginning, when we were nearly immobilized by the mere thought of what it meant to have a transgender child. Other times we have been “out there”: when, for example, we announced on Facebook (with her encouragement) “George becoming Jessie”, complete with a photo of her in her inaugural dress. This was a means of survival for us and done mainly so that we weren’t forced to explain the situation to everyone, everywhere, every time we left the house. But no matter how people learned of Jessie having identified as transgender, the response has been consistent: total acceptance with a healthy and appropriate dose of trepidation — both for us and, frankly, themselves. Our family has been lucky. We know that we are just getting started, but are grateful that Jessie’s social transition, thus far, has been as seamless as we ever could have hoped for. She has that sparkle in her eye and a new confidence which is the envy of many an adult. We take each day as it comes and have as little an idea as to where this will land as we did eight months ago… but at least now her self-portraits make more sense. PS: At this point, it is noteworthy to tell you that it felt strange to refer to my child as George or to call her a “he”. “New normal” surprises me every day… This post originally appeared on George.Jessie.Love.

A Letter From a Mom, By Megan Scanlon

“Just let me know if you need extra blankets for the daddy bed.”   I smiled and responded, “thanks so much,” to the well-intentioned nurse as she left me alone with my first baby, Coleman, who had come into the world just a few hours earlier.  My heart was full of so many different emotions and now, despite trying to ignore it and move on, slight disappointment crept in too. You see, there was no “daddy” to sleep in the hospital’s pull-out “daddy bed.”  Coleman’s other parent is another mommy (or actually a “momma”) my partner of 12 years, Valerie.  And the sweet nurse who had been there throughout my labor and during the delivery knew this.  But gender roles and how things are “supposed” to be are often so engrained in folks; they aren’t able to adjust when someone or something different crosses their path. I knew the nurse accepted me and Val as Coleman’s parents.  Seemingly, everyone we encountered at the hospital did.  But old habits die hard and the constant reference to the “daddy” bed was one of several instances in the hospital when my stomach sank and I somehow felt “less-than.”  Perhaps this feeling was never stronger than when I filled out the paperwork for Coleman’s birth certificate.  In Virginia, only a mother and father can appear on a birth certificate as a child’s lawful parents.  I filled out the paperwork as a single mother, as if Val didn’t exist, even as she sat two feet away rocking our new baby.  To this day Valerie has no legal parental rights when it comes to our two children.   Most days I feel pretty good about myself.  I walk with my head held high and try to stay positive.  I think many people imagine I am unflappable, but you might be surprised how often I am unexpectedly knocked off my game.  I think it has to do with the nature of people and their need to “make sense” of the world.  If something seems a little different or confusing, many people get anxious and feel compelled to squeeze that square peg into a round hole so they can calm their nerves and go on about their day.  Valerie and I encounter this scenario more than we like to admit.   It happens anywhere and everywhere.  We’ve been shoe shopping and when exchanging a loving glance or helping each other pick out shoes, the salesperson will often glare at us uncomfortably and say “I wish I had a sister to shop with.”  Does she really think we are sisters?  I doubt it.  But her brain wants to believe that so that is what comes out of her mouth. The most awkward situation in which we have ever found ourselves was when we were having our commitment ceremony ten years ago.  A friend suggested we go talk to a local justice of the peace who was a sweet old man and whom they felt confident would understand our unique situation.  We met with him one rainy day in June of 2002 and felt good about it.  As we discussed our plan for our purely ceremonial wedding, we really felt that he got it.  He even took our picture for his “wall of fame.”  Then, as we were leaving, he said “but please make sure the groom is there on the day of the wedding.”  He was dead serious.  He didn’t get it.  And we were back to square one.   Being different is hard.  It used to be more of a choice for us, since if someone didn’t “get it,” we could choose whether or not to correct them.  More often than not it was easier to just move on.  No harm, no foul.  “Yes, dear salesperson, I too wish you had a sister.  By the way, isn’t mine hot?”  (Okay, just kidding about that last part.)  But now that we have children (daughter Campbell followed Coleman 18 months later), it is no longer a choice.  Denying our relationship or letting it go when someone gets it wrong would be to deny our family – something we simply can’t do.  When you have two kiddos in tow, pretending you really are sisters so that the Steel Magnolias-era saleswoman’s head doesn’t explode is no longer an option.  Teaching our children to live honest, authentic lives is paramount and as a result, Valerie and I get to live more honest, authentic lives! So the next time you see two men or two women doing something you might do with your husband, wife, boyfriend or girlfriend, stop and think.  Maybe they too are girlfriends or boyfriends or husbands or wives.  Don’t let your subconscious mind jam them into society’s idea of what they should be or what makes sense to you.  Open your mind.  Open your heart. Oh yeah – and if you are wondering who we got to marry us – a special angel stepped in.  Her name is Lois Hornsby, she has a famous son, and she helped us find a special minister who made our day one we will never forget.

 

 

 

 

 

 

 

 

 

 

 

 

 

               

More than My Number  by, Beth Manes

Remember how exciting birthdays used to be?  Yeah, me neither.  I mean, don’t get me wrong, I still love my birthday and manage to celebrate for a whole month.  But at this point, it’s more about celebrating me and spending time with friends than it is about being another year older, and having a higher number associated with me.  Because seriously, will I ever feel the same excitement as I did when I reached double digits?  What could possibly give me the same charge as finally being old enough to drive?  Or vote?  Or order a drink with my real ID? It was probably around 21 when I stopped defining myself by my age.  Last January, I turned 42.  Woo hoo.  Again, I loved the excuse to celebrate and get together with friends.  And what’s better than a birthday on facebook, right?  But, no one cares about the number anymore.  In fact, most of my friends have, by this point, done something to hide their ages.  Whether it’s coloring their hair, injecting a foreign substance into their faces, or actually going under the knife, many women my age want to look like their number is lower than it actually is. I haven’t yet jumped on that bandwagon.  The reason is three-fold.  I don’t have the time, I don’t want to spend the money, I don’t yet dislike what I see in the mirror.  That said, I also don’t introduce myself to people and say:  “Hi!  I’m Beth and I’m 42 and a half!”  I don’t even really like telling people how old I am because it sounds older than I feel.  In fact, I even once almost lied about my age at a PTA meeting.  Three years ago, on my son’s birthday, someone remarked that I didn’t look old enough to have a 12 year old.  I replied:  “Well, I was a teenager when I had him.”  “Oh, that explains it,” the well-meaning PTA mom said.  I quickly recanted because being 39 with a 12 year old sounded better to me than being 16 with an infant. In general, I can go weeks, probably months without my age ever coming up in conversation.  And that’s fine.  But 2 weeks ago not only did it come up, but I was branded with it.  Yep.  That’s right.  Branded!  I competed in the Jersey Girl Triathlon with my childhood friend, Lauren.  I knew that our waves and transition areas were organized by age, so everyone starting with me would be 42.  (Although I got my driver’s license before Lauren, she would start the tri before me because her birthday isn’t until November, so she’s still 41.)  What I didn’t know was that they were going to write a big black 42 on my calf.  Really?  Was that necessary?  Apparently, it was. So, I lined up on the beach with all the other 42-marked women.  We bounded into the water together and began the triathlon together.  At the end of the swim, I got into the transition area, chatted with a few 42s as we donned our bike gear and off I rode.  A few miles in, I passed a 41.  Then a 38.  Then a 34.  Don’t get me wrong, there were plenty of upper-40s (and even low-50s!)passing me, too.  But, that didn’t bring me down.  It inspired me.  I can’t wait to have a higher number on my calf! I can’t imagine any amount of hair dye or plastic surgery could ever make me feel younger than competing in a triathlon and being faster and stronger than someone whose number is lower than mine.  Although I’ve never really tried to hide my age (okay, except for that one time) I’ve never really flaunted it either.  Well, that’s going to change right here and now:  “Hi!  I’m Beth. I’m 42 and a half.  I have grey strands in my hair, laugh lines on my face and I am a triathlete!”  

 

 

 

 

 

 

 

 

                                                                                                          

Mom Genes, by Jane H.

Mom Genes.  No, not the high-waisted, dorky, denim kind.  The kind that live on chromosomes and with a roll of the dice determine the characteristics we inherit from those who came before us.  As a child I wondered, will I develop my father’s superior athletic ability or my mother’s musical flair?  As a young girl when my younger sister sprouted breast buds my grandmother said, “poor thing, she’s inherited my juggas.”  (As we grew into teenagers, jealousy, not pity seemed the more appropriate reaction).  Unlike freckles or bunions, mental illness is not visible in the mirror.  But that doesn’t mean it might not be there – lying in wait. Mental illness has always run in my family.  My mother has been on anti depressants for almost thirty years.  My youngest sibling is bipolar, an alcoholic, and has been hospitalized in psychiatric facilities more than once.  I have a cousin who at age 22 committed suicide.  But three cheers for me, I was spared!  Or so I thought.  But after giving birth to a child in 2008 and another in 2009 I found out I had merely delayed and had not dodged this bullet. My initial post partum depression manifested itself, not in sadness or a lack of bonding with my babies, but instead showed up as a frightening loss of executive functioning.  What I initially wrote off as “mommy brain” progressed into my barely being able to follow driving directions or remember how to make mashed potatoes.  Going back to work full time as a lawyer was a daunting proposition.  I felt frustrated and almost indignant.  How could this be happening?  Things like this don’t happen to me, a former military officer, a successful attorney, and the life of the party. You see, I have always been an achiever.  At 18 after graduating high school I headed off to a prestigious national service academy.  I did well there, and was commissioned as a military officer where again I excelled.  I left the military after completing my service obligation and started law school.  Again, I was successful, earning good grades and passing bar exams in two states two days in a row right after graduation.  In 2008, as a promising young associate in a national law firm, I was married, expecting my first baby, and ready to “have it all.” But things do not always go as planned.  After the birth of our son in 2008 and compounded by my pregnancy and the birth of our daughter in 2009, my mental illness “gun,” which unbeknownst to me had always been locked and loaded, finally fired.  Bullseye.  And no matter how hard I tried, I could not find the person I had been.  She seemed to be lost forever and worse yet – I had to come to terms with the fact that labels that belonged to other people -“depressed,” “bipolar,” “mood disorder” now applied to me.  I felt so sad, so discouraged, and at times even ashamed. Accepting that you have mental illness is hard to swallow.  It is (for the most part) an invisible disability.  You have something that makes navigating the world an extra challenge, but from the vantage point of others, you should be making it just fine.  Its kind of like when you see someone pull into a handicapped parking space.  In our ridiculous human nature we observe the people emerge from the car and look for the physical disability that has earned them the premium parking.  Mental illness is most often invisible to the naked eye.  It is frustrating, confusing, infuriating, and heartbreaking.  It is frightening in that getting help often involves personal disclosure of our resulting failures and shortcomings and in a high-pressure job, there is the fear of major consequences.  Harder still, you find yourself having to admit that you need help.  Sometimes limping along seems like the safer option.   With the help of my family, amazing doctors, and taking some time off I am well on my way back to the “land of the living.”  I know now and have come to accept that I will never fully regain the life I once had, the clarity of thought, the ease of starting each day without a care.  But the life I have now is a better life.  It is a life in which I appreciate each day.  Like a cancer patient in remission, this is my “new normal.” I possess a newfound compassion for those who struggle with their own visible and invisible “differences,” with disabilities, and especially with mental illness.  Like cancer, no one ever asks for mental illness. I am determined to make something out of these Mom Genes.  I want to redesign them into something cool.  I want to embrace them and make them my own.  And if my children inherit them as “hand-me-downs,” I will help them find their way as so many have helped me find mine.   *                      *                    *                             *                                    *

My College Flaunt,  by Rachel Cohen

“Oh my gosh, she should not be wearing that shirt.” With disdain, remarks like this are whispered everyday on my college campus, numerous times a day, by many different people—particularly girls. To some credit, “Wow, that dress makes her look so skinny!” is probably spoken a similar number of times around campus. But these comments are not about liking or disliking a piece of clothing. Truthfully, they are about someone’s body weight. And more often than not with young adults, these comments are flagrant jabs at how much these girls weigh, at how being “overweight”—or, among my generation, being not thin—is not just subordinate, but ugly. To some degree, I think all of us are guilty of this: seeing someone and thinking that what they are wearing is unflattering. And I don’t think there’s anything wrong with noticing things we like and also those we don’t. It’s in our nature. I also realize that we are in the middle of an obesity epidemic, and perhaps that’s why so many girls my age are paranoid about their weight. Perhaps it’s the media. Either way, there is also an “insecurity epidemic” going on these days, and girls in my generation are fueling this fire. The mean comments made about girls’ weight are almost never directed at people who are obese. I’ve noticed that they are mostly directed at young women of average stature who aren’t “skin and bones.” And that’s the troubling part: we are taking our own insecurities about self-image and projecting them onto others just like us. Like Meg has said in her blog, we all have insecurities. I happen to be an athlete—but no, I don’t look like the girls with colorful sports bras in the Nike ads, and no, I can’t eat whatever I want and not gain a pound like most of my teammates. I have to make a conscious effort to understand nutrition, eat healthy, and exercise regularly (as I believe most people should) to stay fit. But what I have come to realize about these girls on campus is that if you are nice to them, they’ll be nice to you. So I try to go out of my way to compliment other students, particularly females, even if I don’t know them. Compliments don’t cost anything, after all. And when people feel better about themselves, I find they are more reluctant to put others down. I’ve also found that after I give someone a compliment, I feel a little more beautiful, too.

 

 

 

 

 

 

 

 

The Road to the Superdome, by Tony Memmel

“…I was born missing my left forearm and hand. When I was a teenager I decided that I was going to teach myself to play the guitar. Learning to play the guitar was a serious challenge for me and required a lot of time and patience. It ended up taking me eight years to come up with my current method of playing which is to re-create a cast out of duct tape that secures a guitar pick to the end of my arm each time I play…” -The preceding excerpt is from a speech that I gave at the Superdome, in New Orleans (7/19/2012) Before I go any further, I’d like to say that I am very pleased to be a guest writer on the “Don’t Hide It, Flaunt It” blog – thank you for having me! Last week, I was invited by the ELCA (Evangelical Lutheran Church of America) National Youth Gathering planning committee to share my story about my hand difference, my music, and my faith with 34,000 youth from all over the country in one of the most historic cities, and venues, in the world. It was an awesome privilege to be a part of such a beautiful and, in my mind, monumental event. It was a tremendous honor and a proud achievement in my professional life. It’s the road to the Superdome that I’d like to tell you about, today, and that started 26 years ago.  I came from humble origins. When I was born my parents were completely surprised to learn of my hand difference as it had not been revealed in pre natal visits to the doctor or in an ultrasound. Early on, my family instilled courage and perseverance in me and pushed me to always do my best in all things. I was enrolled in athletics, sang in choirs, and played trumpet in the school band. My early motivations in music were simply to be able to write and play my own songs, but the challenges of playing a (traditionally) “two-handed instrument” and my philanthropic intentions in my songwriting, have opened my life up to a much more meaningful pursuit. I am very pleased to be working with several non-profit and charitable organizations that are of great importance to me and celebrate the very ideals that I work for every day in my own life. It may sound strange, but I have found everyday challenges with friends, the art of business, and the efforts that go into a successful marriage and family life to be the true challenges that occupy my mind most days. It is very seldom that I think to myself “Now, how in the world am I going to do this with one arm?” Fortunately, I can count those instances on one hand. The attitude that I have expressed throughout this post, my family, the charitable work I am involved in, my faith, and the music that I create have all helped me get to where I am today. I encourage you to listen for a calling in your own life and to pursue it with all of your might. I’d like to leave you with some music. This is a video of my band and me (that’s my wife, Lesleigh, on piano and my friend, Brian, on the drums), and this song is called “Lord Knows We’ve Got Time.” (http://www.youtube.com/watch?v=RMnvNnJ2CdU) Thank you for reading my flaunt. Cheers! Tony Memmel p.s. If you have any questions or comments, friend me on Facebook or send me an email through my website www.tonymemmel.com.  

The Magic Of Diaper Changing, by Ryan Haack

In my experience, there’s something magical about changing diapers with only one hand. My wife thinks it’s less magical, and more…totally unfair. I can’t explain the science behind it, but every one of my three children were perfect angels when I changed their diapers. They would smile and coo and lay there while I swiftly, yet somewhat awkwardly, cleaned them. Even the blowouts were fine. I mean, I was frustrated, but they (usually) refrained from grabbing their own poop or rolling around. It was as if they knew. They knew their daddy only had one hand, so they needed to help. It’s eerie to think about now, actually. On the other hand (so to speak), the relative ease with which I changed their diapers drove my wife bonkers. They cried and squirmed and rolled around with her. You know, like normal. She even tested it out sometimes. She’d have me come in and watch from the doorway as I took care of business. I could sense her behind me, shaking her head in unbelief. I’m fairly sure she was also jealous. No, I’m certain. Now, with our children ages four, six and eight, changing their diapers is a distant memory. A fond memory for me; not so much for my wife. It’s become lore, though. Whenever we’re around friends who have a new baby we get to share the story. And each time it gets more magical. “I actually had Sam changing his own diapers by the time he was eight months old,” I might say. “Yeah, and he only did it for RYAN! Whenever I went to change his diaper, he’d take it off and throw it in my face or wipe it on the wall,” my wife might say. See? Magical. Why ever they did it, I’ll always remember it with a smile. I will always believe that it’s because we had some special connection from birth. They could sense there was a difference with their daddy and they did what they could to help him out. That, or I just have a really bad memory. Nah, I’m sticking with the connection thing. Ryan Haack is married with three children and lives in Wisconsin. He created the Living One-Handed community and you can find him at: LivingOneHanded.com, at Facebook.com/LivingOneHanded and on Twitter at @LivingOneHanded. Visit Ryan Haack’s blogs! Living One-Handed Ryan Haack Does Things*              *                       *            *            *                *               *               *

Don’t Pick On Me, by Michael Arlein

If you want to get a taste of what it’s like to have a visible difference, try walking around with a big bandage on your nose for a few weeks.  I recently had some minor surgery on my nose and my bandage has been yielding some interesting reactions from people. Let’s start with people who I know.  They generally fall into two camps – those who ask and those who ignore.  Upon seeing me for the first time, the “askers” ask me why I have a bandaged nose and I explain to them about my surgery.  If the tables were turned, I would definitely be an asker.  If you see someone you know with a bandaged nose, it seems natural to me to ask them about it.  On the other hand, having answered a question about my nose for the hundredth time, I can also see why it may be annoying to always have to explain your difference. In the other camp are the “ignorers” who ignore the bandage and pretend as if nothing is amiss.  I find the ignorer’s reaction very odd and it makes me uncomfortable.  I wonder why they aren’t asking.  Is it because they think I’d be offended or embarrassed?  Maybe they are afraid I have some terrible disease and don’t want to “go there.”  Or maybe they were raised to believe that it is rude to ask someone about a medical condition. On several occasions I have felt compelled to preempt an anticipated ignorer by starting a conversation with an explanation about my bandaged nose.  “Hi there, I brought you the TCP Reports, and by the way I have a bandage on my nose because I had some minor surgery.”  Preempting in this manner is in and of itself sometimes awkward, especially when the person’s expression indicates that you have given them TMI. What about strangers?  Given the variety of things to see in New York City, it amazes me that people will stare at a bandaged nose.  But stare they do!  I’m a pretty self-confident guy, but I confess that those stares are disconcerting.  At times, I felt like a bit of a freak and wanted to shout out “Stop staring at me!”  At least the train conductor didn’t offer me a half price fare Children’s reactions were also interesting and surprisingly consistent with grown-ups.  Some children stared and said nothing, and some asked me questions.  Of course, when a child asked me about my nose, I was a bit more creative in my explanation.  My favorite was the little girl who asked me about my booboo and I told her it was caused by too much picking.  She thought that was pretty funny. I’m looking forward to shedding my difference soon and rejoining the ranks of the unbandaged.  Nonetheless, I am thankful for the insights that my bandaged nose has provided me into the experiences of those who have permanent differences.  In the meantime, I’m going to take Meg’s advice and flaunt it.

 

 

 

 

 

 

 

 

 

 

 

 

 

Story of Robbie, by Cindy G.

Aaah the Jersey Shore! Fist pumping and Snookie Smoosh aside, the month of July has always been a great time when you live in New Jersey. I grew up a Jersey Girl and have fond childhood memories of  visits to the shore as a child.  Reading Meg’s blogs about exposing her feet at the beach made me face my own insecurities about my own body. But recently I took a trip to the Jersey Shore and felt completely confident. It had nothing to do with my appearance, but because I was able to measure how far I’ve come as a person. They say God doesn’t give you any more than you can handle. Well, I’ve handled a lot. But I am grateful for all of it, because it has shaped me into the strong woman I am today. Thank you, Meg for inviting me to write as a guest blogger. I am inspired by you, and your parents. I hope my story is an inspiration to other parents who are blessed to have special children, like my son.   My son Robbie was born with severe Autism. When he was 2 ½ he had stopped speaking the few words he knew how to say. I took him to a Developmental Pediatrician who diagnosed him with PDD NOS “Pervasive Developmental Disorder, Not Otherwise Specified”, which over time that diagnosis would change to Autism. Back then the only thing I had ever seen of Autism was when I watched “St. Elsewhere” and one of the Doctor’s sons had Autism. I thought my son did not fit the description, and the Doctor had no idea what he was talking about. I had no idea what my life was going to become. When Robbie was 3 years old, my husband Robert and I took my twin girls who were 8 to the local firework. During the usual twilight time, we all sat chatting on the blanket, when suddenly I realized I had taken my eyes off Robbie for 2 seconds…and he was gone. “Where’s Robbie?!” I shouted in a panic. We all looked around and realized he was nowhere to be found. I quickly jumped up and looked around the entire field. Nothing. Robbie had a habit of running away. Whenever he knew I wasn’t looking he took off. Several times I had been in the bathroom in our apartment and I glanced out the window to see him running into the neighbor’s lawn. I knew his M.O. I also knew he was fascinated with water. When he was a toddler, if we were outside and there were rain puddles on the ground, he used to stick his head in the puddle, and then stand up and laugh as the water would drip down his face. I thought he was just quirky! My mind raced as I ran through the crowd, and past the local homes. I prayed “Please God, please let him be all right. Please don’t let anything happen to him. Please lead me to him. Please let me find him.” Knowing his fascination with water, and no fear of danger, I imagined he had either ran toward the Community pool next door, and ended up in the river running past it, or had run into the street. In my mind he was either in the river, dead, or the street, dead. I looked all around calling his name, all the while knowing he would not answer even if he heard me, because he could not speak. For some reason I ran through the parking lot toward the street first, probably figuring cars moved faster that water. As I got to the street and looked up and down, not finding him, I must have had a frantic look on my face because the police officer directing traffic asked if I needed help. I quickly told him what was going on and he asked me for a description of Robbie, blonde hair, blue eyes, blue shorts, red shirt. A 20 second exchange seemed to take 20 min. My son could have been drowning and every second mattered! He immediately got on his radio and alerted all police, fire and EMS workers. They were all in the area already, which is standard procedure for fireworks. I listened as he described my son and added “Please be advised, the boy is non-verbal and will not respond to his name.” I felt like I was in an episode of the Twilight Zone. I thanked him and ran back toward the parking lot, heading toward the pool.   The pool gate was closed thank God. I checked the river. Nothing. I ran back toward my blanket. It was now after 9:00 and getting dark. I knew the fireworks would be starting any minute, and between the dark and the explosive noise, it would become nearly impossible to find my precious little boy. I ran toward the ambulance near the football field and saw our friend Mary who was on the Volunteer Rescue Squad and she said “It’s OK, we found him!” Oh my God, I felt like I wanted to pass out! Apparently, he was walking around the middle of the football field when a squad member heard the police call over the radio, and walked over and took Robbie by the hand. I had the typical reaction of half wanting to scream at him for running away (which he wouldn’t have understood anyway) and half of scooping him up in my arms and hugging him so tight I never wanted to let go. After that experience, I learned to never take my eyes off that child for even one second! We had plenty of “Where’s Robbie?!” moments over the next few years enough to put plenty of gray hairs on my head! We learned to always keep all the doors bolted shut, and to never teach Robbie how to open locks, or un-do his seatbelt. We didn’t take family trips to the shore over night because I feared he would get out and head toward the ocean in the middle of the night. I had a friend who had a house right on the beach in Long Beach Island and we stayed with her a few times. Since Robbie never became potty trained and still wore a diaper, it was convenient to have a house on the beach so I could change him. Every time everyone was in the house though, I constantly made sure all the doors were locked. Every time someone went in or out, I immediately went right behind them to lock the screen door. When she sold that house, I didn’t go to the shore for a while. When Robbie was about 12, I took him for a day trip, and every time I turned my back, he got up and ran down the coast line, and I’d have to get up and chase him. He loved the water, but the waves scared him. So rather than go into the water, he liked to run back and forth, up and down the beach. I have taught aerobics for over 25 years, but when I go to the shore, I go to relax and read a book! This was not relaxing! So after a couple hours of chasing him, it became too exhausting, and we went home. That one trip was enough for one summer. The following year, I went to Ocean Grove with a friend. As soon as we got there, I walked straight over to the lifeguards up on their perch and stood Robbie in front of them. I made sure they got a good look at him, what he looked like, his bathing suit color, and explained he is Autistic. I said he doesn’t speak, and has a habit of running away, so I may need their assistance. Yes, with age was coming wisdom. I never needed them, because I never finished a conversation with my friend throughout the day. I just kept getting up and chasing him down, grabbing him by the arm, and returning him to his seat. My friend marveled at my endurance and stamina. I simply stated it’s just a normal day in my life! Chasing him was really not a problem. The fact that he was not potty trained at 13 years old was my real concern. If he decided to have a bowl movement in his bathing suit, I would really have my hands full trying to figure out how I was going to change him at the beach! This year, on July 5^th  I took Robbie to the beach. He is 22 years old now. Since Robbie has moved into his group home 2 years ago, he has finally become somewhat potty trained! Hooray! He still wears a swim diaper, but we haven’t had any accidents at the beach. 5 years ago Robbie was also diagnosed with Charcot Marie Tooth Syndrome, which is similar to MS and affects his nerve endings and his feet. It’s not so easy for him to run anymore. He runs a short distance, but then he has to sit down. I have taught him to sit at the water’s edge, and he loves when the waves roll up over his legs. Yesterday, he sat next to me in a beach chair, for four whole hours! It was low tide all day, and Robbie was as calm and gentle as the sea. He giggled every time the waves rolled up, as I actually was able to sit in my chair and read my book. It seems as though the tide of my life has turned. Life is good. Or should I say, “Life’s a Beach.” Cindy’s video of Robbie on July 5th, 2012

Pay It Forward: My Own Reaction, by Stacey

I am the Stacey that Meg refers to in her blog “Pay it Forward.” Meg and I are good friends.  She usually takes the bus to work in NYC and I take the train.  But sometimes Meg takes the train and I am always excited when Meg joins me so we have a chance to catch up. We chat the whole way to New York, probably to the chagrin of our fellow passengers. After we arrived in Penn Station on that day in June, we walked together to the subway. In her blog, Meg mentions how she had an “insufficient fare” on her Metrocard and a NYC police officer swiped a card for her so she could enter the subway for free. Meg wrote that she felt “inadequate, even flawed” and that the officer was “taking pity” on her. Even after reading her blog, I was surprised by Meg’s reaction. Since I have gotten to know Meg, I have seen what an incredibly smart, beautiful, fun, insightful and accomplished woman she is. I have also been amazed at how she juggles her high powered job and does an amazing job raising three well-behaved and sweet children, while being a wonderful wife and great friend to her many friends. She is such a capable woman that at this point, I usually forget that she has any “difference” at all.  It is not something that I notice. I think of Meg as Meg, period. So, when the officer swiped the card for Meg, it did not even enter my mind that it might be because of Meg’s “difference,” nor did I think it was on hers. I just assumed he was being nice, helping Meg either because she is a beautiful woman, a woman clearly in a rush on her way to work, and/or because she had a friend waiting for her on the other side of the turnstile. Regardless of his reason, I’m glad that Meg is now able to move beyond it, not read too much into it and just appreciate the act of kindness. Like Meg, I hope we can all “pay it forward” – and give small acts of kindness without regard to what the recipient of the kindness looks like. And, I hope that Meg knows that her friends that love her see her just as Meg.

 

Along for the Ride, by Matthew

Our situation starts as most family holidays do… For some months we had meticulously planned how we would spend our time at Disneyland Paris for what would be this years ‘big holiday’. We’d been once before, the difference this time being that we were now a family of four, and that Isabella, our eldest child, would be old enough and tall enough to brave some of the more hair-raising rides; one in particular, Thunder Mountain. The holiday eventually came around and despite the cold weather and lack of sunshine, there was a lot of excitement within the family. That was until we got to what was supposed to be one of the highlights of the holiday, Thunder Mountain. We had avoided the ride for the first day while we took in many of the milder rides as a family of four, but on our second day, the time was finally right, as was the length of the queue. Our son William was spending time with his grandparents and my wife and I packed ourselves off to join the queue with a very excited and eager 5 year old. We were slightly nervous approaching the ride as we knew Isabella would only just scrape the 1.02m height limit, and as we got to the entrance to the ride, were not surprised to see her picked out from the line to check her height. With a thankful sigh, she eased over the limit by a good centimetre but unfortunately that proved to be only the start of the drama. As we moved to step back in line, the guard motioned for us to return. Curious, we all shuffled back only for a very unsympathetic, and untactful guard to say very clearly “she cannot go on this ride”. Enquiring why, we were bluntly told in an equally untactful manner that “she cannot go on this ride as she does not have two hands.” As you can imagine, none of us were prepared for this. Not prepared for the message that was delivered, not prepared for the way in which it was delivered, and certainly not for it to be so blunt in front of what is a very impressionable 5 year old girl. Despite our best efforts to demonstrate the obvious discrimination, we were bluntly informed that “you cannot hold on well enough if you do not have two hands”. Everything about this experience felt all of a sudden… wrong. We didn’t know Isabella would be born missing a hand and the majority of her forearm. But from the moment we found out, approximately one minute after she was born, we took the attitude that she would be just fine. As a result, we have raised Isabella to see herself as no different to any other child. Of course along the way there have been many questions, many points and stares, and lots of overly curious and blunt children asking too many probing questions of her. But, Isabella being independent and confident, took it all in her stride telling anyone who cared to ask politely, “I was born this way”. Having spent five years building Isabella’s confidence to tackle any problem she faced head on and that nothing she tried to do was impossible, it was all being very quickly undermined by someone poorly trained on the art of managing delicate conversations. Disney isn’t all at fault here. There is a process you have to follow in Disney that sees anyone with a disability evaluated at ‘City Hall’ and given special access to all the rides quicker than most. We did in fact eventually meet these staff and can say with reassurance that they are some of the most polite, articulate and friendly staff we have ever encountered. The problem is, to us, Isabella isn’t disabled. She doesn’t have a left hand or much of a forearm but she can do everything she’s ever set out to do. Including holding on to a ride where most people raise their arms anyway. So why would we even think to go to City Hall in the first place? Unfortunately the drama of the guard entrance continued with more guards saying equally blunt things to us, the parents, all the while ignoring the very person it all affected. Someone who could hear, understand, and feel every word they said about her. The resulting tears and questions were proof enough that she knew exactly what was going on. Our story isn’t all sad. We did get to ride Thunder Mountain. In fact, Isabella rode it four times in the end, each time with her hand and arm firmly placed in the air the whole way round, and a huge smile on her face. In fact, we as a family don’t have an issue with Disney at all. On returning to England, we wrote a letter of complaint to the park in an attempt to raise awareness of the lack of training that was all too apparent. We were pleasantly surprised to get a very personal and apologetic letter back in a very short time-frame, which went a long way to mend the upset at the time. The damage hasn’t been undone though, as we’ve faced a lot more questions from Isabella since being back from the holiday. She’s doubted herself more saying things like “I can’t do that Mummy, I don’t have two hands” always with a tear, and with less confidence than she had before. We’ll continue to build her back up. She’s a strong character and a very determined little girl. And as parents we’ll know for next time how theme parks prefer things to be played. It’s just disheartening that some staff don’t always have the compassion required for such sensitive matters. We hope that our experience might prompt theme park operators to focus their attention on the art of compassion as much as they do on health and safety.

 

 

 

 

 

 

 

 

 

My life as a mom on crutches…by Rachel Schickowski

I have a great husband, a spunky toddler son and a job I love. All the things you hope for as a little girl. They were things I was not sure I would get since I am different. I was born with arthrogryposis multiplex congentia and it mainly affected my hands and legs – I use crutches to walk.  With bent joints and weak muscles, I can’t do all the things that everyone does and I spent a lot of time as a kid having surgeries and therapy. There are days when I want to be different, but who doesn’t?  I have my pity party moments when I wish I could trade in my body now and not have to wait until heaven. However, once I became a mom I found myself longing for a strong body more often. It started the day my son was born. My husband was standing in our hospital room rocking him.  Later I watched a nurse effortlessly pick him up and carry him across the room. When we left the hospital my husband secured our precious baby in the carseat, grabbed handle and walked toward the car. These things are awesome. I’d give anything to do them. Coming home from the hospital was scary. I had my whole life to figure out how to do things but I had no time to figure out the best way to care for my son. He was here and screaming in his swing. My husband was my rock for the first few weeks. He changed a lot of diapers and let me slowly find my way. I know there were times when he was frustrated and felt alone in this baby adventure. I felt like I was failing as a mom and a wife and tore me up. Things changed as I had more time alone with my son. No one was around to rescue me and I had to figure it out.  I avoided onesies with 200 snaps. I stuck him in the stroller when I wanted to go to another room.  I cried with him when I was struggling with his diapers and he was impatient. As my son turns 3, conflicting emotions flood my mind. I am sad that he has become big so fast. I am also excited to get my life back. Right now I can’t go places with him alone. I need help carrying him. When I see a mom carrying a baby on her hip or pushing a shopping cart with her child riding along, I fight off pangs of jealousy. I am scared to play outside with him alone since he now runs fast and often forgets that the street is dangerous. I knew the early years would be hard. I also knew it would be worth it. These struggles have changed my heart. They taught me to find joy in asking for help. Most importantly it has been a daily reminder that we are never given more than we can handle. To follow my journey visit: www.mylegisnotbroken.com

 

 

 

 

 

 

Friends, By Paul Hamm

Friends. They say you can’t have too many friends. Of all the things “they” say, this may be the statement I believe in the most. Being the father of a special needs son, I’ve learned a lot about friendship. My son is affected by a rare syndrome known as Ectodermal Dysplasias. Each year my wife and I, along with our son, Zach, host a golf tournament, Zach Hamm’s Don’t Sweat it Golf Classic, to raise awareness and money for the National Foundation for Ectodermal Dysplasias (NFED). Our event has become wildly successful over the past four years. Why? Friends. One such dear friend is a man that was introduced to me by, you guessed it, another dear friend. I met Bill Brown on the golf course. I was introduced to Bill by one of my most supportive and best friends, Derwin Perkins. Derwin knew Bill and I had a lot in common. We are both fathers. We both have a love for baseball, I’m an old baseball player and Bill is a TV Broadcaster for the Houston Astros. We both have a strong faith. We both love to play golf and we both host golf tournaments to help charities that we believe in. We became fast friends as can happen with people that share a lot in common. Bill also grew to be fond of Zach and my wife Susan. In fact, our families are now very close. Bill has seen many things over his 30 plus years in broadcasting that have inspired him. He has also has met many people that have inspired him. Bill has made a million friends. One of those people is my son, Zach. Bill was moved by Zach’s courage, determination and knack for putting other people first. To Quote Bill, “Zach is go-getter and a do gooder.” In spite of making donations of his time, fame and money to Zach’s annual Don’t Sweat it Golf Classic Bill felt a need to do more for Zach and his efforts to help kids affected by Ectodermal Dysplasias. As good friends do, Bill wracked his brain on ways he could help. He quickly landed upon an idea. He would write a book about the people and events that have inspired him throughout his career. The book “My Baseball Journey” was born. Bill decided not only to dedicate his book to Zach but that he would donate all proceeds to Zach’s beloved charity the NFED. Zach is pictured on the front cover with Bill and also on the back cover with Bill and Houston Astros legend Craig Biggio. The book is twenty seven chapters of compelling, inspiring and moving stories. Zach’s story is chapter 26. Biggio wrote the forward. Biggio is also Zach’s boss but you’ll have to buy the book to get that story. Bill and Zach have become quite a team spending what little time Bill has off from broadcasting this summer to do book signing events, media appearances and interviews. Through his actions Bill has taught my son humility, caring, patience, kindness and generosity. Bill has also brought much needed awareness and funds to the NFED. Why did he do all of this? Because Bill is a friend. Friends can become so close that they blur the line between family and friends. Bill is one such friend. And you can never have too many friends.           For more information on Bill’s book, “My Baseball Journey” please go to www.mybaseballjourney.com To learn more about Zach please go to www.dontsweatitgolf.com  To learn more about Ectodermal Dysplasias please go to www.nfed.org  All proceeds from My Baseball Journey and Zach Hamm’s Don’t Sweat it Golf Classic go directly to the National Foundation for Ectodermal Dysplasias.

 

 

 

 Reflections, by Jessica DePinto

Of all the posts I’ve read on Meg’s blog, “Pay It Forward” gave me the greatest pause.  I’ve known Meg since our undergrad days at UW Madison – halcyon days when we believed the future and our dreams to be limitless.  In “Pay It Forward,” Meg’s encounter with the conductor who offered her a “disabled” fare left me baffled.   Who did he see? When I read Meg’s own reactions to the conductor and police officer at Penn Station – who, even for a brief moment, did Meg see?  It simply didn’t jive with the reflection that I recall of a beautiful, wickedly smart, confident, worldly and vibrant UW undergrad. If I were to take two poems from my  freshman year English classes and assign them to the two of us – as I saw those young women, then – I’d assign to Meg “Song of Myself” and to Jessica “The Love Song of J. Alfred Prufrock.” Song of Myself I Celebrate myself, and sing myself, And what I assume you shall assume, For every atom belonging to me as good belongs to you.   The Love Song of J. Alfred Prufrock And indeed there will be time To wonder, “Do I dare?” and, “Do I dare?” In our time together at Madison and now, as women who have made our way in this world, Meg taught me, and continues to teach me, that you dare, yes, you dare disturb the universe until the world sees, and celebrates You.   Jessica DePinto has been friends with Meg Zucker since 1987.  Jessica was recently named one of Chicago’s 100 Women to Watch by Today’s Chicago Woman.  She was nominated for her work with Loyola University’s School of Continuing and Professional Studies Women’s Leadership Institute and Conference.  In spring 2010, Jessica developed and taught a course, Examining Women’s Leadership through Literature at Loyola.  Currently,  Jessica is a manager with Deloitte Tax LLP, National Customs and Global Trade practice group.  She resides in Chicago with her husband, Roberto.