A Letter to the Rare Genetic Disorder That Was Not Part of the Plan


Dear Cardiofaciocutaneous (CFC) syndrome:

You were not a part of my plan. 

I was going to have a baby boy who I loved to nuzzle when I nursed him, whose first bite of food would be apples. A baby boy who we rolled our eyes and laughed at as he crawled to the kitchen cabinets and pulled out pots and pans, even though we asked him not to. Our baby boy was going to toddle his first steps in the backyard on the grass. Our baby boy was going to have his picture taken on his first day of kindergarten, learn to drive a car at 15, get anxious about the SAT, worry about who to ask to prom, go to college.

You are not a part of that plan.

emmett

We knew you were there before Emmett even arrived. You tried your hardest to scare us, and there were moments you were winning that contest. You stopped us from celebrating his life, you brought days I could barely get out of bed, you took away precious moments from both of our children. You tried to destroy our family. 

But now I want you to be afraid. I want you to be very afraid.  

See, of all the things you may hear in your life, none will ever compare to words from the doctor’s mouth that make you realize your child’s life will be precious and limited.  

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I will not let an opportunity to limit your strength pass me by. I will always be one step ahead of you, and when you challenge me, I will fight harder than you expected. Despite your hardest effort to destroy my child’s future, you should know he’s perfect in every way. Even with a dysfunctional chromosome. Emmett will change lives, he will make this world better. What, I ask, will you have to show for yourself? 

How dare you come into our family and think you could damage our strength, break us and leave us with nothing. You see, the world will always hate you because you seek to take the joy from innocent children. You are despicable, and one day no one will even remember who you are.

Sincerely,

Just A Mom

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 to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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