Surrender - A Memoir of SCIDS Part 4

Updated: Aug 7, 2019




We made it through the night...barely. Her oxygen levels are not holding, the pressure settings on the ventilator are at the maximum. Morning rounds felt extremely heavy. The team is seeing a rapid descent of her lungs’ ability to function, everyone’s expressions are grave. We have to switch her onto a different kind of ventilator, called “The Jet”. This new ventilator will require more staff to look after her. Simple tasks like suctioning and turning will now be done with nurses and respiratory therapists. Nothing will remain simple. On the new ventilator, the team tells us that they will need to keep her paralyzed, preventing her from moving or exerting any energy. A tidal wave seems to crush me again. My heart sinks.


New equipment is brought to her room. The respiratory team is setting everything up. The sounds are louder, the atmosphere in her room is busy. I feel hopeful that this new ventilator will help her lungs, that this will be the ticket to start finally seeing some improvement...


I was wrong.


After only a few hours, she has- again- maxed out the settings on this new ventilator, and her oxygen levels continue to drop. The respiratory team is stuck, what else can they do? Together with the doctors, they decide to turn her onto her stomach - perhaps the oxygen levels will improve if she totally turns over. This is very risky. It is complicated. But at this point, they figure, what have they got to lose??

I see the signs. The team is sharing ideas, trying to problem solve...I see them reaching, grasping at straws against an uncontrollably fast moving virus. I retreat to my room for some alone time. My hopes for healing have nearly evaporated. I argue with God, I cry out, I lament, I beg him to take my life instead! Where was the strength He promised me yesterday? Where is His peace and reassurance? Where are His answers?!


I will never leave you or forsake you.


Peace enters, reorienting me to the Truth...but I can’t stop from arguing with the Lord, because losing my child will be the ripping apart of my very self!


My Father, if it be possible, let this cup pass from me; nevertheless, not as I will, but as you will


Jesus surrendered to the Father’s will. Can I too? Can I surrender my control, my scattered, vivid emotions, the very life and breath of my child, to the Almighty Father? To the One who knows exactly what surrender feels like? Jesus was in anguish to the point of sweating blood, as he prayed in the garden before He was arrested. I feel anguish. I know that He knows. I see what Jesus chose. He chose the path God laid before Him, painful and ugly as it was. By the grace of God, I too, will chose Him - whatever that will mean.


I return to her room. Turning her has not made improvements. Her oxygen levels continue to decline, even with all the oxygen and pressure settings the ventilator provides, her own oxygen level isn’t sitting more than 85%. The doctor tells us that if we don’t see some changes in the next few hours, there is nothing left that they can do. We begin to grieve. We call our pastor, we message family & friends, and the network of believers across the world that has been lifting her up in prayer the last few days. Our home church is praying and fasting, other churches in the community are sending out prayer updates for us. The women join together at church for a time of prayer.

Our pastor comes into her room this evening to pray with us. We bow our heads, my quiet prayer for courage to surrender our baby girls life into His ever-faithful hands, for strength to trust that He will give me strength to bear the pain in what lies ahead.

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