Dear Phelan McDermid Syndrome,
I am writing this to you because I am very confused as to why you have arrived at our door step. 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 are here. I did not invite you. I was the pregnant woman who ate healthy, avoided my beloved ibuprofen, 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 effect 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. These are just to name a few. Also, because of you, I sometimes cry myself to sleep. Because of you, I miss things like snow skiing with my big girls and I often feel so alone and so very tired. You effect everyone in our family. Because of you, my husband often goes to sleep alone. Because of you, all of our extra money goes to ways to combat you instead of to 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 that 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 that I will never get over. Some days I hate you so much that I just want to scream and hit something.
But then there is this...
Because of you, I will never hear my baby say that 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 is five. Also, because of you, I have 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 have found strength like I have never known I had. Because of you I have felt the most intense gratefulness for every day she is 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 have ever received.
And then I think about my husband who has used his mechanical know-how to create the most amazing things to help ease the burden of having all of you around. Because of you, I have 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 have seen a nurturing, selflessness in my 9 year old that is 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 are, 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 in that battle.
I imagine we will never know why you decided to show up, or even whether you have been a blessing or a curse. I do know that because of you, we all rally behind Bella to fight against you every, single, day. Because of you, we fight together, we love stronger, we hold tighter. Because of you, we cherish every moment. If you had not become our uninvited guest, we may be a very different family but maybe, just maybe, this family is exactly what we were meant to be.