The White Picket Fence is Better in Off –White By Mindy Scheier

Just MindyI grew up in a suburb of Philadelphia and had a “ charmed” existence. Amazing parents, two brothers, beautiful house …the works!  I have such wonderful memories of what I thought was the “perfect” life.

Flash forward to 1999 and “perfect” begins to have a completely different meaning. I married a very wonderful man named Greg and ‘my picket fence’ was being built one post at a time. At age 30, our beautiful daughter Stella was born. I was on top of the world. She was the light of my life and caused me to want another baby asap. After a few glasses of wine one Valentine’s Day, I convinced Greg that it was time for another. On Dec 23rd 2004, after a particularly grueling session of child birth, Oliver Jack Scheier was born. He was the first boy on both sides of our family, so everyone was over the moon that the Scheier name would carry on. My fence was expanding…or so I thought.

When Oliver was 3 months old, I knew something was wrong. He could not hold his head up at all and his body was like mush. If he wasn’t my second child, I would not have been clued in as quickly that something was wrong. Slowly my “white “picket fence began to fade. Over the next couple months, Oliver’s weight dropped dramatically and his strength weakened further. The doctors were stumped as he was tested for everything from Celiac Disease to Cystic Fibrosis…all negative. It is such an odd feeling to have the wonderful news that he didn’t have those diseases but then the darkness settled in as the “unknown” stretches out into every part of your brain……a very dangerous place to be.

Oliver had to learn everything that came as second nature to others. He never crawled as I couldn’t keep his head up and didn’t walk until age 2.  But even after he learned to walk, he had to wear a helmet as he fell all of the time and didn’t have any reflexes to brace his fall. And so the pity stares began…. “poor you”. It still amazes me how one look can mean 1000 words.  That was simply a warm up compared to when Oliver had to get a feeding tube placed in his nose. The tube was taped to his cheek and down his back. As a mother, it was heartbreaking to see my beautiful son with this on his face and even worse to see the pitiful looks on other’s faces. I remember the first birthday party I took Oliver to with his tube in place. I didn’t want him to miss anything and needed get through my first time as well. I walked in with a big smile on my face but was torn up on the inside as people, even some of my friends, had a hard time looking at him. I had a moment in the bathroom where I allowed myself to cry my eyes out. I then cleaned myself up, made a promise to hold my head up high and make people follow my lead on how to act.  I quickly learned the art of not looking around at who was looking at us, but rather focusing only on Oliver…it saved me.

The next few years of Oliver’s life were such a blur of worry. I now look back at pictures and am so sad because I feel like I missed so much.  I got knocked back into reality in February of 2008 when we got a call from the doctor that Oliver tested positive for SEPN1 deficiency.  I cried instinctually both because I had no idea what that meant and because we finally had a diagnosis. I got to a computer later that day and Googled the life out of “SEPN1 deficiency”. I can drum up that nauseated feeling like it was yesterday when I think of reading that my precious son had a rare form of Muscular Dystrophy. Muscular dystrophy is a group of inherited disorders that involve muscle weakness and loss of muscle tissue, which get worse over time. MD weakens muscles over time, so children, teens, and adults who have the disease can gradually lose the ability to do the things most people take for granted, like walking or sitting up. There was so little research on his form because he was now only #70 in the world! It was truly a miracle that they were even able to diagnose him.  As a big believer in fate, at the time that we got the news, I was 13 weeks pregnant and had just had my CVS test done. The doctors quickly extracted from the fluid taken from the baby to test to see if he or she also had MD. Let me digress for a moment that having a 3rd baby was a complete risk. We had no idea what Oliver had and therefore did not know if he had a mild or severe form of whatever “it” was. I couldn’t really explain to my husband why I needed a 3rd baby, I just did. I knew that our family, our story, wasn’t complete. So I thank my husband daily that he finally agreed. He was terrified that it would happen again and didn’t think he could bear it…but truly by the grace of the g-d, the CVS came back that our baby was a carrier but did not get the mutated gene from both of us as Oliver did.  Our Beau was born August 25, 2009 …simply the best gift for the whole family.

So now our real journey began. Having a child with a physical disability or difference has changed our life…for the better! He teaches us every day what is important and what isn’t.  He has to work for everything physically only to potentially one day start to loose what he has worked so hard to achieve…a degenerative disease does that. They don’t have a tremendous amount of information on Oliver’s form of MD so we are learning as the doctor’s learn, which actually helps us get the “front of line,”so to speak, for any experimental opportunities. Now 9, Oliver continues to view himself different than the world does. He has visions of playing football, soccer and basketball. I still struggle with the right words to say that would sound better than “you can’t do that.”  It’s the fine line between hope and reality. I never want him to stop dreaming.

There is sadly nothing that I can do to cure Oliver or even make him stronger, but I made a decision over the summer to find another way to help him …and others. In August 2013, I started a foundation called Runway of Dreams. As a fashion designer by trade, I saw first-hand the impact that creating clothing has on kids. It is a way to express yourself no matter what differences you have.  Runway of Dreams provides an authentic program for children with physical disabilities and other differences within the world of fashion. RofD provides opportunities to meet and work directly with fashion designers, fashion models and the fashion community to ultimately walk or wheel down the Runway of Dreams demonstrating true courage, confidence and beauty. “Where There’s A Will There’s a Runway.”   RofD will launch with a high profile event in September 2014 in NYC uniting the fashion community with children with physical differences to work together to not only create an “adaptive” look but to model it in a high profile runway show. Designers will be paired up with selected children to work with them to create their dream design, “adapted” to their needs. Fashion models will work with the kids to help them shine down the runway. Runway of Dreams will also work to produce an Adaptive clothing line specifically catering to kids with physical disabilities. Clothes will be not only extremely functional but fashionable and most importantly sold in a major retail store.

 

Mindy and Oliveram so passionate and motivated to make RofD a reality because helping kids feel empowered, empowers me. It is a feeling that is indescribable to not be able to do anything to help your child “get better”. So RofD helps to fill that void. I see Oliver asking me questions or offering his thoughts about the program and it makes me so happy. I see how he embraces life–believing he can do anything. I want to protect that vitality forever but I live in fear daily that it will be shattered one day. But I lock that far, far away in the heart because Oliver CAN do anything…in the best way he can.  So…yes, my “white” picket fence is “off –white”, and I simply wouldn’t have it any other way.

 

 

 

 

 

 

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