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This is Real - A Memoir of SCIDS Part 2

Updated: Aug 7, 2019


When I say we settled in, it means we dropped our stuff in a corner and crashed into the closest available chair. At 3am now, we are spent.


After only a few hours, the respiratory team very quickly determines that the CPAP mask is not enough support for what her lungs need - the beginning of the escalation to come. So by sunrise, they have bumped her up to BiPap settings, which helps provide breathing support through a mask, as she breathes both in and out. As the morning and afternoon go on, I start to realize, this is actually happening. This is real.  

We are offered a room at the Ronald McDonald Family Room, which was in the hospital right down the hall from the PICU. We get settled in. It was a day of feeling lost, of trying to find my way. Locating the Family Room, trying to find a place to get coffee, looking for a place to find food, getting lost through the hallways, and very lost in my emotions, so very many of them, they are all swarming inside of me. Exhaustion beginning to set in, there doesn't seem to be a way to sort any of it out.


Lost in reality. Life happens like that, doesn’t it? One day everything is ‘normal’, and the next day, something happens and our emotions bound aimlessly around inside us. How do we, in the chaos of our reality, find our way? Find our Rock? Or is it that He is actually right there beside us, we just need our eyes open to see Him there? 


"I will never leave you, or forsake you"


The reality of what was happening with our daughter starts to feel real, the gravity of what was happening is now bearing heavily on my soul. This wasn't the time to sort out emotions, it was just time to cry out and know that He is part of this reality, this moment and ever present in it.


We get through the day sluggishly, trying to keep Samara from pulling off her mask, consoling her as she cries, learning all we can from the staff about the medications and machines. I reassure myself that at least she is breathing on her own, and not on a ventilator; she could just need a little extra support now and this could all be over soon...

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