Updated: Sep 23, 2020
(To catch up on the previous posts in my 'Memoir of SCIDS' series, click here.)
Remembering all the answers to prayer this week makes me feel like I want to tell you it was all smooth sailing! I want to tell you that everything went perfect, that she recovered, that there were no more complications.
But that wouldn't be true...even if it's how I feel.
We have faced deep valleys of grief and sadness, seen God's hand move mightily in prayer, and experienced peace through complications.
Chaos seems to abound, as circumstances can change quickly. A measured fever, intolerance to the tube feeds, blood pressures trending down.
Then, we start to see improvement, slow and steady. We start to see her little body strengthen. Some improvements are small, some are big.
We pay attention to the blessings inside the chaos.
It's been 11 days since we got here, since this crazy adventure in the PICU began. Eleven days sleeping on a LaZBoy, eleven days of morning rounds with the team, eleven days of uncertainty in what the day ahead will hold.
In the chaos, there is hope. There is a peace that surpasses all understanding. There is so much grace extended to us. We just need to fight to see it sometimes.
A big step now is we are finally able to change her ventilator- back to the regular one- which shows that her lungs are healing, and it is exciting!
On the regular ventilator, she doesn't have to be paralyzed by medications, so we have the blessing of seeing her eyes open now, as she is more alert.
This also means she is moving around - a good thing - but not so great because she could pull out her tubes and lines. So we remain perched next to her, holding her hands and legs, playing, reading, & watching all her silly leg gymnastics.
It's just that breath of relief, she is getting better, getting stronger.
And...we got to hold her today!!
The team told us they needed to help us get set up to hold her, obviously it would take a lot of hands to manage her lines and tubes and things.
I thought I had time to go get us a quick lunch, while they were waiting for everyone to be ready.
As I come back into the room, my husband is sitting in the chair, beaming widely, holding our precious little girl in his arms!
I was definitely jealous he got to be first!
But his look said it all, his arms were full of love. There was this overwhelming joy in my heart. I now realize there was an ache in my own heart from the days past, that my empty arms were hurting these last 11 days. Unable to take away the pain, unable to protect her from this virus... reminding me that I am not in control...even when I think I am.
I do my best, as a mom, to protect my kids from dangers, yet what happens when I realize that it is all out of my hands?
I remember the first time I felt that helplessness. Our oldest daughter was born in Africa, and malaria (among other things) is a constant threat. In order to protect from mosquitoes, we had her sleeping with us underneath a mosquito net.
In the morning, I found she had mosquito bites, there was a sneaky little mosquito that had found it's way inside the net, to fill his hungry belly. To be honest, I freaked out! I had done everything I could to protect her, and it still wasn't good enough!! I felt defeated. I didn't know if I could do this, raise my babies in Africa, with all the risks, especially when my best would fail.
I prayed. I felt so confused. And God answered me. He reminded me that my children are a gift and that I am to hold them with an open hand. I don't own or control them, I care for, love on and disciple them, but they are His and He holds them in His hand, under His sovereign, loving control. And when my best isn't good enough, His best always is.
As I learned that lesson, first 6 years ago, it cycled around, so I could practice what I'd learned. The first lesson from a mud hut inside the African bush, and again in the 3rd storey, high tech, pediatric intensive care.
These lessons are blessings too. They can bring us to the feet of the Father, for us to learn more trust, depend more on Him, worship Him with more of our heart.
Day by day, step by step, the blessings in the journey.
Psalm 23 reminds us that our Shepherd leads us into valleys. They can be dark, dangerous and lonely. Yet though it is a difficult journey, He brings us to quiet waters and green pastures; He leads us to provisions that will sustain us, strengthen us and serve us. Since He is our Great Shepherd, we can choose to follow Him, else we will stray and miss out on what He is bringing us to, even in the chaos.
I know that I didn't always see those provisions during our time in PICU. At times, I would succumb to grief and fear, trying to resist the path that He was leading us on.