I’ve started and stopped writing this a million times over. The truth is, as I am writing, I realize the pain is still very fresh. The memories are also deep and I am not sure I can share our story. I also question if this is even the proper outlet.
But then I realize, it was the support of my football family, in the middle of a football season that carries us through one of the hardest periods of our lives. That’s why this is the perfect platform for me.
Here’s Our Story:
My middle daughter has a rare syndrome, so rare in fact we were told it’s one in a million. It took until she was two years old to be diagnosed. I remember the year and every appointment surrounding the diagnosis like yesterday. I also remember it started and lasted through football season and while my coach was often busy. I never felt alone, even though I was always alone.
Also, comically, at this same time, we were walking through a separate difficult season. It paled in comparison, to this though. Nothing like God’s sense of humor to show you one difficulty compared to another.
My daughter was born with a few bonus features and interesting symptoms. Despite persistent questioning on our end, nothing ever came of a diagnosis in those early months. So, when at two years old a new symptom presented and old symptoms flared – her appointments were front and center for us and football was not.
Managing the bulk of these doctor appointments alone while also juggling everything else that comes with being a coach’s wife was not easy.
Her first appointment where we heard the possible diagnosis hit me like a ton of bricks. I left, with her, my 4-year-old, and an infant feeling heavy- while coach drove to practice. Consumed with grief I was also outraged, how could coach head to practice? We just heard our two-year-old had a potential lifelong diagnosis. I couldn’t wrap my head around it.
When the kids and I arrived home and I made a few phone calls to my friends who have children with special needs, and to my sisters – my support system. Talking helped me understand that perhaps coaching and football were therapy, and this was how coach needed to process the news.
We were not able to keep things quiet for long as our sweet girl underwent a surgical intervention within weeks of her diagnosis. This also kept me and the kids from the football field longer than anticipated.
Our first day back at practice and under those Friday night lights, I realized exactly what I had missed AND needed. The outpouring of love from fellow coaches, coaches wives, and parents supporting us. Their encouragement was healing. It was like I was back where I belonged, our kids were back on dada’s playground, and I had a host of babysitters to help me.
What’s more and what I didn’t know, was that when I was home, taking care of appointments, surgical needs, and figuring out next steps, coach had been telling those close to him on the field what was going on. He explained my absence, his added stress, voiced his concerns, but also his admiration of our daughter’s resilience.
When those above him suggested he take it easy, he said his therapy was on the field. It was in these moments; I knew I too needed this football family. I needed the meals left on my porch, the hugs, and the validating, ‘you got this, mama,’ affirmations. I needed those thoughtful people checking in on coach, making sure he was okay, and doing all the team stuff we suddenly stopped doing for coach.
At the end of that year, I realized my daughter was healthier at home. It has taken several years to learn how to manage her syndrome and in that, our late night trips to the emergency room, calls to 911, and doses of steroids have decreased considerably. But only when we control the situation.
We are now a few weeks away from an airway surgery we were hoping to avoid. This will be during football, yet another season she will miss. She’s considered high risk for catching viruses so I hired a sitter at the start of the season so I could attend as many games as possible, and she could stay protected.
As coaches, players, parents, and administrators learn of our situation, I am taken aback with gratitude for their respect for her and us.
Moral of the story, the love for football runs deep. And while I may not understand it, a lot of grief has been processed through this sport and on the field turf. You never know what’s going on in someone’s life. We need to remember to show each other grace and love- despite the number of W’s.