Featured Life Wellness

Fighting for my daughter’s life

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’m going to be honest, it can feel really terrible to trudge through life some days, these long days. Part of me screams, “I can’t go on! I can’t run this race with a broken leg.” It’s excruciatingly painful, right down to my fingertips. The other part responds, “You have got to keep running, like your life depends on it. Be dragged and wipe off the blood.”

When I stumble across my need for a normal life, for a life that I envisioned for myself, this is when I crumble into a fine dust that sifts right through your fingers.

This is when the anger surfaces, the comparison, the spirit groan.

This. Is. Too. Much.

Don’t you see? Doesn’t anyone see? God, don’t you see this?

And then I remember: the mama who lost her three children to diarrhea and HIV. The one who had her child stolen in the night, straw mat empty. The one who gave birth to three children in the dirt, all of them dying from lack of a birth attendant.

Don’t you see, doesn’t anyone see?

I feel that pain, the ache traveling across thousands of miles, rippling into my own hurt. And it’s making me want to do more for the suffering, for the world’s throbbing wounds.

Isn’t that what we, as Christ-followers, are called to do? Aren’t we called to do more, to live differently, to love harder?

From what I recall, the heroes of the Bible lost an awful lot on their journeys. They struggled, endured heartache and loss, had broken dreams, fits of rage, lust and jealousy. Yet God still carried them through. He used them to birth nations and split seas.

We will face heartache and broken dreams, debt and sickness. There is suffering and injustice and life often veers dramatically off our planned course.

So what do we do in the waiting, in the groaning? Pull back in our grief or rejection and let life’s flood pass us, rushing river that it is?

This is part of the journey, even though it’s in the valley. This is not the end, though the sheer depth of it threatens to rob me of peace.

In a moment of rest, the autumn sun far too warm for October’s end, I left her hospital bedside while she slept — not because I wanted to, but because I needed to. Her respirations were too high, her oxygen levels dipping too low for comfort.

But I looked up, as hard as it was, I looked Him square in the face and said, “I know you see this, and still you are calling us to trust even as we venture into the wild, dark places. I choose to believe in You, and not what I see.”

As the sun started to give way to the inevitable gloom of gray clouds, I felt the rush of truth and the heart-expanding that takes place in brokenness. I returned to her bedside, renewed, full of promise. For I know we will see redemption here too.

Flickr photo (cc) by Cristian Tavernier

Kona