I was standing alone on a crowded tram in Las Vegas, we were there for our 14-year-old daughter volleyball tournament and I needed to grab something from our room, it was a good 30 minute round trip and I was in a hurry to get back before the next game, yet idle, stuck on a tram, so I pulled out my phone. The snippet of words I saw on my notifications was more than I needed to see. I wanted to go back and unread the words. I didn’t want to read/hear/believe the words I just came across, but it was too late, “Her fight is over” I read. No! I wanted to scream. No! I wanted to yell. No! I silently sobbed and held in the back of my throat while standing on a crowded tram with strangers. No. No. No.
The one who lost her battle was a not yet 6-year-old little girl whom I have never met in person, yet I see met her mama and grandma every 2 years at a conference, I have been speaking with her father via Facebook for years, ever since she was diagnosed with the same beast of a disorder our daughter has, CDKL5 deficiency disorder (CDD). When their daughter was diagnosed, our awareness video was the first thing they saw on the disorder and they reached out and we’ve been friends ever since. I can tell you nothing can bond people from more different places, backgrounds, cultures, religions, languages, than loving and caring for a child with the same disorder. I adore this family and their beautiful daughters, and this loss…this loss was crushing.
Once I made it back to the hotel room I was able to let myself sob. I let that bathroom be my safe place, my tear catcher, my sob silencer. I needed a spot that weekend, I needed a place to take in my grief so then I could wash my face and be there to support my daughter we were in Vegas for. When you suffer losses and having a child with as severe of a disorder as our daughter you suffer losses often. You grieve often. You are reminded of the severity of her condition and when you do the waves of grief will swallow you. I find myself needing safe places to endure it and be able to wash my face and get back out there. I am a mom to 5. I have a lot of emotions I am multi-tasking. I realize some people could see this coping as fake maybe, but honestly, there is no way around it for me.
You know how you hear of an awful loss or know someone who passed and they were your child’s age, or in their class or sports activity and you say “this hits too close to home.” With this disorder and so many others, we are given this reminder monthly, sometimes maybe we go a quarter, but it happens often and each time, each and every time, you are crushed and broken and wondering will my girl be next.
When I decided to share about CDD I wanted to highlight our beautiful daughter. I wanted to show her pictures at Tim Tebows Night to Shine, tell you about her awesome High School and tell you about adaptive sports and awesome classmates and all the positives there is to raising a child with special needs, but my heart isn’t there right now. And maybe sharing with everyone how hard it really is. How heartbreaking it really is. How much work it really is, maybe that is doing more justice to awareness than putting on a happy face and saying yes we are enduring over this hard hard thing because we do that too. We do. Every day my daughter wakes up and goes to school and on family outings, she is enduring and is a pillar of strength against the daily seizures, the tummy troubles, the aches and pains of a body unwilling to do anything asked of it and 16 years of sitting in a wheelchair and spinal fusion surgery scar that covers her entire back. She is amazing and a warrior and my hero every single day. To not be real and say how hard this truly is would be an injustice to her.
Being Lily’s mama has become my badge of honor. I am proud of her and proud to be hers. Every single day I am doing something to ensure she is healthy, she remains healthy. I have never been able to work a full-time job because she is my full-time job. From that very first day when I saw our 3 weeks old baby girl suffer her first of a lifetime of seizures, that day everything changed. We all changed. She has made us all better just for her existing. I wish things were easier for her. I wish that cure would come sooner. I wish a whole lot of things. But what we have today is a wonderful girl who is resilient and brave and she is adored beyond anything else and she is the best big sister to 4 siblings and she is to be cherished all the days we are lucky enough to have her.