In the morning- (Dec 28 7pm)- we are taking our daughter to Seattle Children’s Hospital to be sedated so that she can’t move during an MRI scan of her brain (specifically brain stem).
We’ve been on one big head trip for a while after ruling out some other causes of Central Sleep Apnea and now whats left is brain issues. One of them we have to rule out is scary (below) and would require brain surgery. The people who have this brain malformation and subsequent surgery are called “ZipperHeads” which would be cute once you have succumbed to its reality. But we dont think its cute because this is our baby. Sometimes things are too scary to call them by thier real names…..and this is all really just a head trip because most likely Iris has a fairly normal brain.
Chiari Malformation (is now) = CarrotMuffin Affirmation—As in- we’re going to do the MRI to rule out the possibility of Iris having CarrotMuffin Affirmation. But if she did have it, we’d rather call it CarrotMuffin Affirmation.
Lets talk about intuiton. All of my intiutions so far about yesses and nos to medical stuff surrounding the quest to figure out Iris’ constant night waking and yelling have eventually proven to be right on the money. So at this point my intuition has told me we need to have the MRI and my intuition has kept on telling me we need to have it even though there is some risk to sedation of a person so tiny. So, do I think she has the CarrotMuffin? No. Well. I don’t know. What my intuition has always said is that Iris’ brain is “different” and I don’t know if that means physically different in a way we can quantify on an MRI. Maybe she’s just a genius. Geniuses maybe need less sleep or have a harder time staying asleep?
I always tell my clients “Get all of the information before you freak out.” And I think thats part of why we’re finally doing this MRI. There are a lot of ways the world provides us to figure things out. But then, at some point, it stops. If the MRI is clear, then we have nowhere to go to explain the central sleep apnea (why does her brain tell her lungs to stop breathing while she’s sleeping and she needs to wake to gasp for air?) At that point we can try some sedatives which are not a long term solution and may not even work or could even be dangerous but we still won’t know the “why”. And then maybe we have to just go on without sleep somehow parenting the best we can and hoping she grows out of it.
This has been a huge lesson for the control freak part of me. Whether we “know” or “don’t know”, I will still have to trust in an inherent goodness, in a loving God, in a purposeness of events. I will be repeatedly and forever humbled by the parts of life where I don’t get to call the shots.