It seems like yesterday that my daughter, husband and I were huddled around the ultrasound technician as she searched to see if we were having a boy or girl during our 20 week check up. We were ecstatic to learn I was carrying a little boy.
However, this joyous news quickly turned to alarm and confusion when at a routine appointment the doctor insensitively blurted out the words, “walking is overrated.” This is how we learned that our beautiful baby boy had an abnormally developing spine, a condition known as Spina Bifida. I felt so many layers of emotions that day, with so many questions left unanswered. One thing became abundantly clear however; we had no clue what the future held for our growing family.
Fast forward 20 weeks, Colton was born via C-section at 38 weeks. He was promptly whisked off to the NICU for surgery to close the large opening in his lower back. Thankfully, to our relief, the surgery was a success. Afterward, Colton settled into his room in the NICU where he would stay for the next 15 days. Spina Bifida is a condition caused by an incomplete closure of the spinal column. Colton has the most severe form which also causes muscle weakness, paralysis, loss of sensation in the legs and fluid in the brain (hydrocephalus). We have had many appointments with neurologists, orthopedic surgeons, physical therapists and occupational therapists. Since Colton’s legs were hyper extended and his feet were clubbed at birth (his feet and legs were bent upwards towards his head), he also had to go through a series of castings and surgeries to bring his legs down.
Even today I reflect on the insensitive words the doctor said to us when he realized there was an issue. Despite having advanced degrees and a great deal of medical knowledge, as a mother of a differently-abled child, I got an immediate crash course in how to navigate the emotional and challenging decisions our family was faced with each day
Colton is now eight-years-old. Although he has a disability, he is a bright, happy, loving, curious and determined boy with a million dollar smile! He’s an avid New England Patriots fan and his room is covered in Patriots memorabilia (alongside records of his favorite band, Creedence Clearwater Revival). He’s also recently discovered a love of wheelchair basketball! Colton uses a wheelchair almost all of the time, but can use a special type of leg orthotics with a walker to help him walk short distances. It’s been truly incredible to see how far he has come, but beyond his interests, we are thrilled to watch our son develop into the person he is today. He is so social we call him the future mayor!
Just by being himself, Colton has been blessed to have some amazing experiences over the past few years. He went to NYC for a magazine cover contest, was the face of Shriners Hospitals for Children’s fundraising campaign, and was signed by a modeling agency. Colton demonstrates to everyone he meets that beauty comes in all sizes and abilities.
Don’t get me wrong– it hasn’t all been easy. We have hit some hurdles along the way. In particular, Colton struggles to dress himself independently. Mostly, he has difficulty with his pants and shoes due to his leg orthotics. He has overcome so many challenges that it is heart-wrenching to watch him struggle with the daily task of dressing himself. Then I learned about Runway of Dreams, an organization that partners with mainstream retailers to adapt existing brand-name collections for people with disabilities. This was the solution we were looking for! With inlaid magnets behind buttons and seams, Colton is able to button up his shirt and put on his pants with ease. I’ll never forget the first time he was able to dress himself completely on his own – the look on his face was priceless!
I reached out to the founder of Runway of Dreams, Mindy Scheier, to thank her for what she is doing and learned about the Runway of Dreams Foundation, a non-profit that works to promote people with disabilities in the fashion industry and advance the future of adaptive apparel design and innovation. A few months later, Colton was rolling down the runway at the Runway of Dreams Foundation Inaugural Gala and Fashion Show in NYC. We met amazing adults, parents and kids, all who had different abilities, but one thing in common – the need for adaptive clothing.
Today, because of Colton’s experiences with Runway of Dreams and the Runway of Dreams Foundation I can see such a major difference in his self-esteem. As a parent, the most important thing to me is to ensure that Colton grows up independent, confident and happy. Thanks to our love and unconditional support and the work of Runway of Dreams and the Runway of Dreams Foundation, Colton is clearly on his way.