Chris’ Story: By Heather E.

August 8, 2016 | Abrams Nation

HeatherE1_Iamspecial (1)When Chris was born he had a heart defect.  It wasn’t large enough to warrant surgery but it was something that was constantly on our minds.

He was always behind in growth—it took him longer to walk, he wouldn’t talk. Finally, at 2.5 years my pediatrician talked to our cardiologist wondering if his heart was to blame for his lack of growth.  We decided to go to genetics to see if there was an underlying issue like a form of dwarfism.

We got the call a couple of weeks later. “Mrs E, are you sitting down? This is Dr. so and so from genetics. Your baby boy has a super rare syndrome called Smith-Magenis. He will be mentally handicapped, he will self-harm himself. He will be violent. It is estimated that SMS occurs in 1 out of 25,000 births. There is no cure and we know nothing else to help you. You can research more online.”

So after some time to deal with this news, and a grief period…we decided it was time to fight. It was time to help Chris become the best Chris he could be.

It was hours of therapy a week for years…it has been and continues to be numerous IEP meetings and emergency IEP meetings. It has been numerous trips to the school to pick him up because his outbursts have cleared out the class.

But all in all, he’s a great kid—Chris is Chris, Chris is not his diagnosis.

He’s currently in second grade. He can write, he can read and he can do basic math. He’s a genius with computers (way smarter than me in that department). He gives the best hugs and knows everyone’s name at school…and they all know his because he is everyone’s friend.

He is a joy and a rare gem in this world. He is a light in a dark space. He is one of 500 SMSers in this world and I am so proud of the boy he’s become and I’m so excited to see what the future holds for him. I’m so glad I was chosen to be his mom.

He has made me into a better mom.