my daughter’s condition is terminal: but we will see redemption here too.
It’s just the common cold. But for our family, it means we’re stuck in the hospital, feeling like our lives are close to being over. While other kids are picking pumpkins in the patch, mine is struggling to breathe. She couldn’t pick pumpkins if she tried.
There are always multiple medical appointments and the ever-nagging need to watch for signs of aspiration or sickness or respiratory failure. My 20-month-old daughter was diagnosed with Spinal Muscular Atrophy type 1, a degenerative neuromuscular condition, at 3.5 months of age.
The doctors said her condition is terminal, that nothing can be done for her. That she won’t walk or sit up. She will eventually lose the ability to do… everything.
We’ve been in the hospital three times due to the common cold, and we’ve stayed there between two and seven weeks each time. And each time we’ve been told she may not recover. We are on one wild roller coaster ride that we desperately want to get off of.
Sometimes our life as a family revolves around doing very little: to keep us sane, to keep her safe. And we just don’t have the resources to do much. In these moments, I choose to feel the overwhelming weight of grief and fatigue, because I am tapped out.
While I sit in this hospital, desperate to see the suffering of my daughter end, I get the feeling like I’m losing, like I’m under the giant’s heel. There’s this crushing weight, and my wheezing heart fogs my clarity. I see the mountains looming, and indulge my fears and frustrations.
Self-pity pulsates through my head. What kind of life is this? For her and for us?
Why didn’t we “dodge the bullet?” I yearn and I compare. It gets me nowhere.
When the health of your child, or even your own health is threatened, it can be very debilitating. There is a cloud of lack that hovers, carries weight and rain. If it’s not fear, then it’s fatigue, a sense of loss, grief, heartache. We have to fight for miracles when the doctors believe they hold all the authority. We fight for hope when they say there is none.
I wrote for Converge Magazine. Read the rest here.