my daughter’s condition is terminal: but we will see redemption here too.

November 18, 2013, Michaela Evanow, 5 Comments

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.

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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.

5 Comments

  • Reply mug up for Canuck Place: | Michaela Evanow December 2, 2013 at 3:21 PM

    […] On our first visit to Canuck Place Children’s Hospice, I went to the mug cupboard for a hot cup of tea and noticed that the cupboard was full of old, forest green mugs. They are small and oh so boring. And yes, ugly. We, along with many other families in BC, go to Canuck Place for respite care, where we have 24 hour nursing, meals provided, a room with a view (if you stay in house), and time…to rest, to read, to write. You can read a slice of our story on SheLoves Magazine or Converge Magazine. […]

  • Reply secretangel November 18, 2013 at 12:16 PM

    Praying for you all…

  • Reply manila2008 November 18, 2013 at 11:57 AM

    Dear one, I heard a sermon on Sunday – one of the things spoken was how our culture does not see anything good about pain and suffering, and because of that some terrible choices are being made that will affect our futures. But Christ walks right into pain and suffering and transforms it. Our faith, following his footsteps, faces what is (and there IS much pain and suffering) and looks for the transformative path through it. Not easy, not easily known, but nontheless there – and with Christ’s help do-able. The Pastor went on to say that how we allow our pain and suffering to be transformed by God’s power of life is the light that shines in the darkness. It will give us life and those around us right in the midst of the suffering. Kind of like, ‘In your light we see light’. (Psalm 37, I think).. Then he said, the choice is, will we become transform-ers, or transmit-ers? Will we walk the path of transformation in our suffering and the suffering of others, or will we transmit that pain onto the backs of others? (Thats a stumper!) Depending on the day and the moment, I am a transmit-er,….
    In your words, I see you walking the path of transformation – you are a transform-er and although the choice is always in your face, you are choosing transformation. Sometimes we have nothing to offer except our choice. Dear one, you are doing it….. May the comforter comfort you in every way, strengthen your will, and give you Peace. Blessings on you and yours,

    • Reply Michaela. November 18, 2013 at 12:21 PM

      Yes, such a big YES to this! What a great sermon. Thank you for these words. I love what you said about making bad choices, to get out of suffering. So much to glean from it…

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