A Time to Adjust (Memoir of SCIDS Part 9)

Updated: Sep 23


(*To catch up on the previous posts in, 'A Memoir of SCIDS' series, click here)


We can hold her now. Our plump, sweet little girl, connected to wires and tubes everywhere, in our arms for moments at a time. We are weaning off the sedation medications, to prepare for the breathing tube to come out.. for her to finally breathe all on her own!


Deep breath.


This deep breath is meant to calm my own nerves, yet it reminds me that her damaged lungs will need to fill on their own.


Who would have thought that breathing was something you need to be anxious for, that the breaths we take each moment - unaware as we are - can become an uncertainty.


Infection and inflammation take their toll, resulting in damaged airways, and the breath I take for granted becomes a question for hers.


I couldn't hardly sleep. Partly the nerves of what the day will hold..but it might also be a result of her throwing her legs around her crib like a gymnast. Less sedation medications mean that she is more active. MUCH more active... It's amazing to see, really.


So many days she has been laid in that crib, paralyzed and not moving. Yes, I will take flailing legs. Yes, I will stay by her side to make sure she doesn't pull out her tubes. This big step of breathing on her own lays before us, a daunting measure of her healing.


The team does their morning rounds through ICU. They are going to wait until they've seen all the patients, then come back and take out the tube.


Ugh, another hour, at least. I run down to Starbucks for another cup of coffee.

Hubby is sitting with her, again trying to wrangle her legs in the crib. My heart smiles at how far she has come, at what healing has already been given her. Even so, many questions nag at me: Will she be able to do it? Can she breathe well enough on her own? I've grown so used to all the machines, how will her body cope?...how will I cope?


Trusting the experience of the team. They think she's ready. Trusting the process, this crazy, terrifying journey the Lord has led us on. I'm not in control, not in the least. It is absolutely unsettling, but it moves me to practice trust, to practice dependance on God.


They get set-up, the emergency cart is at the door, the RT stands at her bedside with oxygen ready. It's finally happening. I am giddy with excitement (especially because they allow us to stay).


Her doctor pulls the tube. They give her medication to reduce the swelling in her airway. She's wheezy and coughing, her voice sounds funny. Trepidation, rising.


But she's okay. She's breathing. Her oxygen levels are good. I just want to scoop her into my arms and run away....not exactly sure where I would go, but I feel I am going to burst. Maybe I can hold her...


Hang on, they say, smiling, we need to watch her close for another hour.


I think they could sense my eagerness, like a bird trying to get out of a cage.


Sigh of relief. It's okay. She's doing this. God is healing her, one step at a time. He is taking me along this journey, one step at a time.


The rest of the day goes really well, she stays on a bit of oxygen but she holds her own and we simply enjoy it. Evening comes. Yet, there is no ventilator lulling us to sleep. It's just her wiggles, wide eyes and gravelly voice.


It's time to adjust.


Getting her to sleep is more challenging. She seems to want to make up for the lost time and keep her eyes wide open. The beginning of some restless nights.


These last two weeks, life has shifted. No planning ahead. No life outside the ICU. We have had to adjust to changing circumstances, develop a character of flexibility. Our life in Africa demanded this of us too.


Life doesn't stay the same. There is an ebb and flow of changes, tragedies, joys and sorrows. There is nothing new under the sun, but rather a time and a season for everything. Can we adjust when things go awry? Can we enter this moment in time with open hands and open hearts? When a pandemic sweeps the globe and our lives are suddenly halted and stilled, how do we adjust? Do we discover joy?


"I perceived that there is nothing better for them than to be joyful and to do good as long as the live" Ecclesiastes 3:12


In uncertain times, we breathe, perhaps with some apprehensiveness, or maybe a lot. The air we used to take in was instinctive, natural and effortless, with every passing moment. Routines, life and relationships were all second-nature to us. Now, it may all feel a hard fought struggle, trying to connect and make sense of what is going on around us, as the ground we walk on seems to give way underneath our feet.


But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; his mercies never come to an end: they are new every morning; great is your faithfulness. 'The Lord is my portion,' says my soul, 'therefore I will hope in him." Lamentations 3:21-24


All may be shaken in our lives, during one season or another. By the grace of God, we can lean in to what He is doing inside us, to find the joy He gives us, to hold on to the hope He alone provides. The sacrificial life of Christ, His death, resurrection, and His return, are what we are assured of in Scripture. We have a great hope in uncertain times. May you be filled with that peace and joy today as you adjust to the changes of life.


*Check out the previous posts in 'A Memoir of SCIDS'!

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