It Is You Who Fixed Me

Since the day you were born I have been trying to fix you.

I remember nursing you in your pavlik harness which often brought tears to my eyes. I hoped that hip dysplasia would be our greatest challenge. It was nuts and bolts, fixable, I thought.

Then your umbilical hernia developed. And it was big.

Next, you were diagnosed with hypotonia, so we started physical therapy. Still fixable, I thought.

Then they found a congenital diaphragmatic hernia and you had scary surgery. But you were fixed.

Afterwards, you were diagnosed with global development delay. So, we started early intervention six times a week. We would fix this.  

Then, you qualified for the preschool disabled program. I convinced myself you wouldn’t be in special education very long. You were thriving in so many ways.

It was recommended you enter the kindergarten inclusion class and I jumped for joy! But then you started having seizures and life became very scary. The medications came with awful side effects and didn’t always work.

Since I am your biggest advocate I was up all hours of the night researching. We would fix this. 

I consulted with your doctors and we tried everything. The word autism entered our lives.

We started therapy, soccer, cbd oil, karate, and a new school. We would fix this. 

Somewhere along the way, we had an important geneticist appointment where we were given information that I needed time to process and accept. And as you came closer to double digits, I noticed the widening gap between your peers, the meltdowns becoming unmanageable, and your unsteady gait.

I reached out to your doctors and continued my research. We would fix this. But this time, when I searched your de novo variant looking for updates from researchers, I learned more. And in the middle of the night, in my pajamas in my bedroom, I stared at my computer screen looking at the name of the disease that has tormented my family for the last decade, Raynaud-Claes syndrome.

It is an X-linked syndrome characterized by borderline to severe intellectual disability, impaired language development, behavioral problems, seizures, progressive ataxia, and more. Your geneticist confirmed the news. I felt sick and relieved at the same time. 

I remembered how you looked at me recently with tears in yours eyes screaming, “What’s wrong with me?” I thought about how I’ve tried to move the earth hiding your disabilities because I feared you’d resent me for sharing them in a few years when you’re fixed. But now I know better. You need my voice. 

Because of you, I see things differently, beautifully. I now know that you need me to help you educate this world because so many people don’t understand our differences.

I thought being quiet and putting people on hold while we fix this was the right strategy, but I’ve changed my mind. Because it takes a village, the right village. We have been fortunate to begin building ours. 

See, it’s not about fixing you after all. It’s about teaching this world how to accept and love others with differences.

Our journey is about inclusion, empathy and kindness. It’s about saying the name of this disease out loud so that we help find the cure. 

My child, you have the kindest soul. You have fought and won battles I never even knew existed. You are my hero.

Yes, there have been really bad days, but moving forward, I promise I won’t hide us and who we are.

I’ve been scared of the ignorance and judgment in our society, but maybe, just maybe, if I keep talking people will listen. And this horrible disease we’ve been fighting an uphill battle against will ultimately change the world by making it a kinder place. 

What I’ve come to learn is that we all struggle in one way or another. Sweet girl, you’ll never know all of the challenges I faced before you were even here.

Today I realized that somewhere along this journey it is you, my first born, who fixed me. Thank you for finding my voice and teaching me the greatest lesson in accepting the unknown. 

I look forward to changing the world with you.

Written by, Michele Fulton

Michele Fulton lives in Northern New Jersey with her hard-working husband, three equally amazing daughters, and adored puppy. She loves spreading positivity and hopes to create a kinder world by sharing her journey as a special needs mom.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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