For the past eleven months, I’ve marked time by remembering the past. What were we doing last Christmas and Easter and June and spring…when we were still a family of four?
It’s taken on a more intense timbre of late, because we’re coming to the end, the final weeks of Julianna’s life.
One year ago, I wrote:
Parenting a child with a terminal illness means that your heart is fractured a thousand different ways. One day it will be broken, but until then, you fight to give your child the happiest, most comfortable, most beautiful life you can.
And fight, we did. Last spring, Julianna lost her voice, but she gained a microphone….which allowed her to talk even more. She got another wheelchair and it widened her world. She told me that love is a superpower.
And yet, it was the beginning of the end. Julianna’s feeding tube finally failed (it lasted eighteen months – some sort of record, I’m sure) and we were thrown on the horrible roller coaster that only parents of medically fragile children know. We squeaked through, but it took a toll on a little body that had barely any reserve.
Julianna had more strength than anyone I’ve known – but none of it was physical. I see it now: her body was done, and the end was near.
I wonder if it will be like this every spring, this journey back to the last days of my daughter’s life. Will I relive her death for decades to come? Will it gut me always? What is the long term prognosis for a broken heart?
Impossible questions, and there are no satisfactory answers on this side. And when I get to the other one, maybe they won’t be needed because the pain will be obliterated – in the blink of an eye.
Eleven months ago today, Julianna rested in my arms one final time. The pain was indescribable, but I am grateful that she ended her life as she began it: in my arms.
I was able to give her safe passage. Sometimes it’s the only thing a mother can give.