Our youngest son was placed on continuous oxygen at five months old after struggling with a difficult respiratory infection that he just could not bounce back from. What was supposed to be a treatment that remained within the confines of the hospital ended up following us home. Weeks turned into months as we were promised he just needed a bit more time to recover. The tiny cannula that nested inside of his button nose was a constant reminder that the life we had just brought into this world, our solid healthy looking baby boy, was far more fragile than we had thought.
Those weeks that became months soon became a year and as we met more hospitalizations and appointments with his doctors it became more and more clear that his little lungs were weaker than we had first hoped. It became more clear that the life we had anticipated for him was going to be far from anything we could have considered fair.
As his first birthday approached and after all of my expectations for his quick healing had passed, I pointedly asked, during a rather difficult appointment, if they thought our son would ever be able to thrive off of his oxygen. His doctor looked at me, patted my leg, and said "not all little boys are made to play football mom." The words that were meant to soothingly skirt around the truth struck me sharp like a dagger. I was quiet for the rest of the appointment. A large lump stood in my throat working as a flood gate to hold back the tears. The drive home was long and somber, the humming of his oxygen concentrator drowning out all of my rational emotional thought.
He was supposed to play football.
I didn't speak about it for days. In fact I barely spoke for days. I was lost within my own thoughts, ones that I could barely sort out. I should have known better; nothing in this life is guaranteed. We already had to learn through our daughter's illness just how fragile life can be. Certainly in the grand scheme of things sports were not important. Perhaps sports wouldn't even be his thing anyway, maybe he would be the next stand up comedian, or an artist. I was obviously being silly.
Then the guilt started to eat away at me for having these thoughts at all. Shouldn't I just be grateful that I was blessed to have him? What kind of mother worries about a future of sports when her son can barely even breathe and eat at the same time? I knew every single moment with him was a gift and here I was wasting that time worrying about something that simply should not have mattered. My mind was a battlefield, and I was quickly losing ground.
When I finally could not stand the sound of my own internal bashing anymore I picked up the phone. I dialed one of the only people I knew who could listen to me try and spit out the emotional wrecking ball that banged around somewhere between my two ears. Before my dear friend could even say hello, I broke down into a sob that only too much coffee and days inside my head could buy me. Quickly and without regard for what she might be doing I blurted out "he was supposed to play football!" It took a few moments and stifled sobs for me to realize the other end of the phone was uncomfortably quiet. "Hello," I sniffed."
"You know this isn't about football," she said, in pointed school teacher voice.
"This whole thing. It isn't about football, or any other sport. You already know that. It is about you grieving over the life you thought he would have and fearing the outcome of his future, and that's ok. Nobody anticipates that they are going to give birth to a child that is sick, it is ok to be sad about that. It is ok to grieve for the things you thought he would have. That is only natural. Take your moment, your moments, trust me there will be more, own them, and move on."
She was right, in every way really, it was not about football. I was grieving for him, the baby who had a medical supply bag instead of a diaper bag, who had an apnea monitor instead of a baby monitor, the baby who had more medical supplies and wires than binkies and bottles, and the future that had become so unclear. It was about the loss of a dream. It was about my concern over his ability to thrive in a world that he did not seem compatible with, and the doctors who could not fix him. It was a love so strong my heart could literally explode, and the fear of what might happen to me, if something happened to him.
Years have passed since that dreary day and our son has grown into an amazing four year old boy. His lungs still stink at being lungs, his mitochondrial disease has made sure of that, but he has found his pace in this world. Today he grabbed a football and my heartstrings as he asked me and his big brother to go out and play. Memories I had hidden deep inside bubbled up to the surface as I watched my rosey cheeked boy wobble around with a wide eyed grin on his face trying to play keep away from his brother, happily failing, as they both plummeted to the ground. His laughter echoing in my ears still now hours after he has been tucked into bed for the night.
You see none of this was about football, not even a little bit, but watching him today, having that moment just filled me with so much joy and hope. It reminded me that his life was never ours to plan from the start, but right now I have faith that that's okay.