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Warning: This is an extremely raw and emotional description of my feelings that I wrote the day Christian died. It could definitely trigger anxiety or grief, so please use discretion when reading.
My son is dying. I want to scream, cry, throw things, demand someone does something. Anything. Anything at all that will make him better. Make this easier. Make our time last a little longer.
But there’s nothing anyone can do. Not his parents, nor his doctors. I’m holding my precious child who may not even make it to his one month birthday in a little over twelve hours. I sit here aching because I couldn’t protect him from the disease (see Walker-Warburg Syndrome) that is taking him from us so much quicker than we ever imagined and I can’t save him. All I can do is hold him, keep him comfortable, and try not to think about the days ahead.
How do I do this? How do I let him go? What do I do when I no longer have him as a reason to get up? When I no longer have him as the sole purpose to make it through the day? How do I go back to “normal” life when such a huge part of me will be missing?
We were going to take him home tomorrow. Last Friday we had started coordinating getting him home to meet our dogs – his furry siblings, to see his room, to see our home decorated for Christmas. We were going to extubate him (take out the breathing tube) and see if he could ventilate effectively on his own. I had so much peace about trying to get him home on his one month birthday, December 6th. I had hope and faith that he would make it, defy the odds and survive at least through the next few weeks. But I will never get to take my son home. The day I dreamed of for so long will never happen.
After a morning full of anticipation for the morning ahead, my heart dropped as I rushed to his room. I had been so excited that Christian would be having Christmas pictures in a little Santa suit that his aunt had bought him. When I came in to spend what should have been our last day at the hospital, he was surrounded by staff. His usually quiet room was buzzing with activity. Yesterday, he’d had a bit of a different day but he had slept well when I’d held him and we left feeling good about his condition. That changed drastically overnight. His ventilator mode was changed, oxygen upped and his tube pushed in further. His color had changed and his breathing had become more labored.
I called my husband and told him that he needed to get to the hospital. That’s when all our plans unraveled. We were graciously moved to the eleventh floor to a suite where we could have lots of private, uninterrupted time with him and allow our close family to surround him in love.
And that brings us back here. My son is dying. And I’m powerless to do anything but ease his pain, even as my own increases with an immeasurable weight that will ultimately crush me.
I try but fail to hold off all the what ifs and what should have beens. The dreams, the hopes, and the desires we held for this child. The things we wanted to do, to show him, to give him. All those things go with him. I feel like everything has gone wrong. And it will never be right ever again.