I tell my boys to explore and run and take risks. I want to tell her the same thing but I can’t. So, I tell my boys to be brave and I tell her to be safe.
I am writing this post from the Starbucks in our children’s hospital. For once, I’m not here with Alyssa. She is spending this rainy, Saturday afternoon at a family birthday party while I’m in the city with one of her brothers. He is here to spend a few hours with kids like him, boys and girls who have siblings with…
Four times this month, the monster has won. Four times. Four mothers have been forced to bury their small children. Four kids are gone because of a disorder that most of the world still sees as non-life threatening in spite of the 50,000 people in the US who die seizure related deaths every year.
I was sitting on the couch a few days ago reading Facebook when another post stole my breath. A sweet girl was curled up in her daddy’s arms watching TV and then she was gone. No warning. No preparation. No goodbyes. Just gone. I looked down at my own little girl with her head on my shoulder and I felt my heart stop because as much as I try to pretend we’re OK, I know that monster lives in my house too.
As we sat around the fire pit in the hotel courtyard and talked for hours, I suddenly felt my soul exhale. Every woman in that circle knew what it was like to hold your seizing daughter in your arms and pray she takes another breath. Every woman understood that strange mixture of devastation and relief that comes with a diagnosis. Every woman bears the scars of dreams that were ripped from her chest. Each of them understood the pressure of carrying this burden but somehow as we all shared our stories and shared the weight, it seemed to get a little lighter.
I don’t believe that everyone has to be a winner but I also recognize that not everyone is playing the same game. I’m not asking that Alyssa be given some patronizing certificate simply because she has a disability. However, I think that it is time for schools to recognize that different kids have different goals and they should be recognized for achieving them.
If you are the parent of a child with special needs, you are likely very well aware of the divorce statistics for our cohort. Our marriages are significantly more likely to end than our peers with healthy children. It just seems cruel that the disorders that try to steal our children attack our marriages too. The truth is though we can experience stress levels similar to those of soldiers in combat and that puts strain on even the healthiest relationships. Our marriages aren’t doomed though. We just need to understand what we are facing and protect our relationships while we weather the storm.
Today is the two year anniversary of my life as Humpty Dumpty. On December 11, 2013, I stood in a WalMart parking lot and answered the phone call that changed everything. That was the day that I broke.
I relate to the other parents of children with special needs on many levels but I don’t bear the guilt of having been the one to pass on Alyssa’s genetic disorder or the constant questions of if it was something I did caused her problems. I relate to adoptive parents too but our story isn’t just about adoption anymore. I switch back and forth between groups depending on the support I need at the moment.
I recognize that look in your eyes. It’s a mix of terror, despair, confusion and maybe a little bit of hope that this is all just a bad dream. Maybe you are still in the hospital waiting helplessly while the doctors try to stop the seizures. Maybe you are feeling broken having just received your child’s diagnosis. Maybe you are ready to curl into a ball and hide because it all feels so overwhelming. I’ve been there. I’m still there sometimes.