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.

Screen Shot 2015-03-04 at 11.53.48 AM

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.

Screen Shot 2015-03-04 at 11.55.13 AM

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.

Screen Shot 2015-03-04 at 11.19.29 AM

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

Sincerely,

Maria

This post originally appeared on Miss Bitterfitta.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Related to Central Core Disease

Watch the Lovely Moment This Young Girl Living With Hair Loss Gets a New Wig

The smile on this little girl’s face will make your day. BuzzFeed produced this video that follows the process of creating a wig out of donated hair for children living with hair loss. In this case, a woman named Hannah donated hair that becomes a beautiful new wig for a little girl named Bridget, thanks to [...]

7 Things I'd Like to Say to the Staff Treating My Medically-Complex Child

To the staff overseeing my medically-complex child, My child has been in this world much longer than you expected, thus I’ve been in this relationship with you much longer than I expected. If I could break up with you and find someone new, believe me I would (I’m sure you would too on some days). But [...]
cathy wearing a scarf and smiling

How a Multiple Sclerosis Diagnosis Changed My Life for the Better

Of the more than 2.3 million people worldwide who are diagnosed with multiple sclerosis, I’m only one story. I’m a wife, mother, daughter, daughter-in-law, sister, friend and woman living with an incurable and unpredictable disease. And even though I’m only one person, my story can add great value by educating others about what it’s like [...]

These Photos Are a Reminder That Our Loved Ones With Alzheimer’s Are Still People

“Nana said, ‘Bill’ today!” my mom exclaimed before she even had both feet inside the house. She’d just gotten back from spending the day at Mary Manning Walsh Home, the nursing home on Manhattan’s Upper East Side, where my grandma lived for the last few years of her life. It shouldn’t have been a big deal that [...]