In Shakespeare, the characters are often cast out of civilization into some type of wilderness. In the wilderness, they work out a problem; in the end, they emerge changed in some way.
In Scripture, it is much the same. Moses with the burning bush. Israel in the wilderness for 40 years. Jonah and the whale. Jesus in the wilderness for 40 days.
In life, it is much the same. A single moment hits us in the gut with the force of a hurricane and we are flung into the wilderness. When the world stops spinning and we find ourselves there among the brush, we wander in search of some unknown destination called "normal."
But, as Gandalf tells Frodo, "Not all those who wander are lost." The wilderness is always for some purpose greater than simple comfort.
Last Tuesday, we passed the 40-day mark in the NICU. Let me be clear: our proverbial wilderness is not made rough because of our Kate. We firmly believe that she was made exactly the way God intended for something really special. These 40+ days have been hard because of the uncertainty in waiting for various test results, the helplessness in watching our baby feel pain, the longing to have our Kate home.
On day 1, we were told Kate may have a condition that is medically termed "incompatible with life." Today, day 47, we know that is not the case.
While we still do not have a diagnosis, we've learned that Kate has some type of muscular disorder that affects her vocal cords, arms and legs. Because of her vocal cord paralysis, she has a hard time breathing and will come home with a trach. Because of her trach and overall muscular disorder, she has a hard time swallowing safely and will come home with a g-button. Because of the contractures in her extremities, she will come home with splints and endure quite a lot of physical and occupational therapy.
While we still do not have a diagnosis, we've learned that Kate has some type of muscular disorder that affects her vocal cords, arms and legs. Because of her vocal cord paralysis, she has a hard time breathing and will come home with a trach. Because of her trach and overall muscular disorder, she has a hard time swallowing safely and will come home with a g-button. Because of the contractures in her extremities, she will come home with splints and endure quite a lot of physical and occupational therapy.
So, in this wilderness we have crawled from the canyon and walked a rocky path. But as we emerge from our wilderness, we see that the path called "new normal" stretches far.
In Deuteronomy 8, Moses tells Israel, "Remember that the LORD your God led you on the entire journey these 40 years in the wilderness, so that He might humble you and test you to know what was in your heart, whether or not you would keep His commands."
I think there is something both weakening and empowering in walking the wilderness. In the wilderness, there is no shelter for our weakness. The LORD tests our mettle, and we are exposed-- the wilderness may burn, but it also refines. Where we are weak, the God of the Universe infuses us with strength that we do not naturally have; and as we realize that we are not strong enough by ourselves, we understand with a new sense of wonder that our God is powerful.
And in wonder there is beauty.
Here's the exciting news: we get to take our Kate home SOON. Kate's g-button surgery last Wednesday went really well, and the discharge planner at the hospital came to talk last Friday! It looks like we will probably be home at the beginning of next week.
So friends, celebrate with us as we take these last few steps out of the wilderness. Pray for us as we take our girl home and settle in to our "new normal."
Prayer requests:
-Pray for Avery as she transitions into her new big sister role. I'm pretty sure she thinks Baby Kate is about as real as Doc McStuffins... So, next week is going to be interesting for her.
-Pray for our future home health nurses. Pray that we quickly find one or two that are just right for Kate and for our family.
-Pray for Kate's transition home. She has no idea what home is, so pray that she settles in comfortably and quickly.
-Pray for Lee and me to wisely manage both of our girls.
-Pray for peace and confidence as we care for Kate, especially at night-- Because of Kate's trach, she does not make noise when she cries. So, pray that we confidently learn her "upset" cues.
-Continue to pray big prayers for Kate's progress and her strength (physical, emotional, and spiritual) as she grows.
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