A Letter to Phelan-McDermid Syndrome


Dear Phelan-McDermid Syndrome,

I’m writing this to you because I’m confused as to why you arrived at our doorstep. Not just you but your friends, polymicrogyria, hypotonia and cortical visual impairment, with their little groupies, seizures, acid reflux and “failure to thrive.” I just don’t understand why you’re here. I didn’t invite you. I was the pregnant woman who ate healthy, avoided my beloved ibuprofen and indulged in an occasional coffee (but immediately worried about it, so I really only ever drank half a cup). So why did you come to torment my sweet baby girl, to try to steal her from us? I did everything I could to keep you away. On the day I was told you were here I really didn’t understand all the ways in which you would impact our lives. Now I do.

Because of you, Bella will never tell me she loves me or call me “Mama.” Because of you, Bella will never play jump rope with her sisters or tattle on them for being mean. Because of you, I will never see her dance at her wedding or chase my grand-babies. Because of you, I sometimes cry myself to sleep. Because of you, I miss things like skiing with my big girls, and I often feel so alone and tired. You affect everyone in our family. Because of you, my husband often goes to sleep alone. Because of you, our extra money goes towards combatting you instead of towards fun things like vacations. Because of you, my big girls have told me they never get enough time with me, and it makes them feel cheated. Worst of all, because of you, I know I will attend my baby girl’s funeral — something no parent should have to endure.

To say these things make me angry or sad wouldn’t fully span the scope of my feelings. Some days your arrival feels like a tragedy I will never get over. Some days I hate you so much that I just want to scream and hit something.

But then there’s this… image

Because of you, I will never hear my baby say she hates me, like every little girl/teen says at some point. Because of you, Bella wants me to rock her every night and snuggle with her every day, even though she’s 5. Because of you, I’ve experienced unbelievable joy over such small but beautiful things: Bella grabbing my hand or hearing her most spectacular Ernie-like giggle. Because of you, I’ve found strength I never knew I had. Because of you I’ve felt the most intense gratefulness for every day she’s healthy and happy. Because of you, in a quiet moment my 11-year-old told me she thought I was so brave — the biggest compliment I’ve ever received.

And then I think about my husband, who’s used his mechanical know-how to create the most amazing things to help ease the burden of having you around. Because of you, I’ve seen a tender side of my husband that makes me love him even more. Because of you, our family sings and dances just to see Bella smile. Because of you, my older girls will walk up to someone in a wheelchair and introduce themselves. Because of you, I’ve seen a nurturing, selflessness in my 9-year-old that’s rare in one so young. Because of you, my big girls are so devoted to their little sister; they both aspire to be therapists when they grow up (and if they do, they will be amazing). Because of you, our family has adapted to what our life is, fought to find ways to make every day special and grown closer.

I imagine we will never know why you decided to show up or even whether you’ve been a blessing or a curse. I do know that because of you, we all rally behind Bella every single day. Because of you, we love stronger, we hold tighter. Because of you, we cherish every moment. If you’d not become our uninvited guest, we may be a different family. But maybe, just maybe, this family is exactly what we were meant to be.

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.

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