themighty logo

Dear ‘Genetic Disorder Unspecified’…


Dear “Genetic Disorder Unspecified,”

I don’t know what to say. You see, this is how our relationship is — complicated. Bittersweet. I can’t quite say “thank you,” and “F-you” is a little too harsh now (although it’s admittedly been said many times in the past). It’s like a Dr. Jekyll and Mr. Hyde thing. Since we’ve settled on this placeholder diagnosis — and even before that — you’ve amplified the good and the not-so-good in me. 

I’ve felt absolutely alone and found wonderful friends I would have not found without your presence. You caused a crisis of faith. And an increase in prayer, a connectedness to God, an opened heart for sermons to touch me. I have faith that everyone is beautifully made. I’ve cried countless tears — tears of fear, tears of joy, tears of desperation, tears of pride, tears of exhaustion and tears of amazement. Because of you, I’m more compassionate for others and sometimes have a jealous streak over Facebook posts of milestones met seemingly effortlessly. Because of you, I’m more patient and lose my temper more when I feel overwhelmingly tired. I endlessly research and question if I made the right decision yet know in my bones I’ve done the best I can to help her fight you. You kept her baby-like for longer — I enjoyed the extra snuggles, not having to worry about her opening closed doors and escaping or climbing on everything. But this five-years-and-counting in diapers and without words to express herself sh*t sucks! You’ve taken up a lot of time and energy in my marriage, and because of you, we doubled down on this relationship and have a standing weekly date (My husband does thank you for that!). I’ve been heartbroken and sad when I watch her struggle with things kids half her age do with ease. I’m also over-the-moon ecstatic when she finally does walk or color or drink from an open cup.

I guess what I am saying is — I don’t have to thank you because you’re not my daughter. I don’t have to curse you because you’re not my daughter. I’m grateful for my life — all of it — the good, the bad, the mundane. You are ever-present but don’t get to be the star of the show. I wish we weren’t so complicated. But being a mom is complex and exhausting. The unknown can be difficult and overwhelming. You’re tricky and mysterious. On the Mr. Hyde days, all I see is the bad. Luckily, I’m also more complicated, and I have many days of the sunshine and sweet. So I try not to beat myself up over our relationship.  

My daughter is who she is and is wonderfully made. You’re here; I know that. You impact our life daily; I know that too. My reactions to you and life are my own. So for better or worse, you are a part of our story — but not the cute part or the tenacious part or the best part. She’s got you beat on all those. And as a mom and family, we’re bigger than you too. So I guess I do have a lot to say. We’re complicated.

Sincerely,

Ms. Jeckyll

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 to [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.