To the Disease That's Caused My Family So Much Pain, I Want to Thank You

Dear Central Core Disease,

I don’t like you. As a matter of fact, I hate you. You have caused so much hurt to my family.

Five months ago, I gave birth to a beautiful little boy, Amadeus. And right away, you had to hurt me by showing the world Amadeus wasn’t alone — he had you with him. The midwife took him away before I even had the time to hold him. He couldn’t breath or move. His pulse and oxygen saturation were both dangerously low. For that, I will always feel hate toward you.

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At that time, we didn’t know it was you. The doctors thought it was centronuclear myopathy that had entered my son’s body. After a muscle biopsy, we found out we had to learn about you instead. But you are a secret little fella, aren’t you? There isn’t much information about you. Not anything we can read, anyway.

Because of you, I am afraid to hold my baby. Because of you, I have built up a wall around me so I can’t break down. Because of you, I’ve cried countless tears in the shower. Because of you, I’ve already planned my son’s funeral. Because of you, I don’t remember much from my first months with my baby. Because of you, my 5-month-old baby has had to be the bravest little warrior I know. Because of you, his three older brothers didn’t get to meet their brother at home after he was born. Amadeus has had a tracheostomy done, he endures treatments on a daily basis and he’s still in hospital because he needs nursing 24/7. Because of you.

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But also because of you, Amadeus will grow up in a loving family. Because of you, his dad and I found our way back to our love that was broken. Now we are stronger than ever, and for that, I thank you. I thank you for making me appreciate family and friends in a way I never knew was possible. I thank you for helping me understand how parents to children with a disease feel. Even though we parents go through different diagnoses and emotions, we do have one thing in common — we will never stop fighting for our beautiful children. Though we don’t meet or talk or write to each other, we are a huge family. And families have each other’s back. Families are there for one another. Families love each other unconditionally. I now know I love heaps of people — people I don’t know and people I know I’ll never meet — but who will forever have a special place in my heart. And I promise you, Central Core Disease, I promise I will spend the rest of my life learning how you work and will do whatever I can so you won’t hurt another family.

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I’m thankful for a lot of things because of you, but I still do not like you.



This post originally appeared on Miss Bitterfitta.

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