I remember how she struggled against the anesthesia mask, crying as the anesthesiologist pressed it hard against her face. With terror, she stared at him. Thank God she did not stare at me, I could not have bared it. I hadn’t planned it but instinctively sang to her the song I wrote for her before she was born:
“Iris is a rainbow red orange yellow Amelia like the pilot green blue indigo violet Elizabeth like the queen indigo blue and green And now its time for bed yellow orange red.”
I also said something which usually comforts her, “Mama here, mama here”. She seemed to be having none of it but it was very helpful for me. And then her eyes shifted right and left and finally closed. I had to leave her side immediately as they made sure her breathing as stable and whisked her away and they made me take her lovey blanket with me. I fell into my mother’s arms and totally lost my shit into that blanket, like a baby. Again by the grace of God I remembered how hungry for breakfast I was and I stopped crying and we went to the cafeteria. I was hoping for biscuits and gravy. They were out of that and the sausage was terrible as were the potatoes but the fruit was okay.
And now we know she has a normal brain, and of course I regret doing the test at all. Its great to finally “know”, but looking back it was crazy to put my mostly perfect baby through an anesthetization which has many risks including death. I risked her death to get somehow closer to sleep? I must be more desperate than I’m aware of. I must be a lunatic, a selfish and horrible mother.
And anyway, it was so anti-climactic! So now we know that Iris has a normal looking brain. I was thrilled and relieved for two days and my mother cried tears of joy. On the eve of the third day, which was last night, Iris has a bad night waking every 10 or 20 minutes for 12 hours and I am jolted back into the reality that we still don’t know what to do to change this and it still sucks really bad. The only thing left is the vague idea that maybe the apnea is just caused by an immature nervous system and she will grow out of it…eventually. I make a follow-up appointment with the neurologist who gave us the clear MRI news clinging to some thread of the idea that she may come up with something to try from here. I know full well she’s read the new sleep doc’s report and the sleep doc doesn’t want to treat Iris with caffeine therapy to stimulate her breathing at night (because it is more likely to mess up sleep in general at her age) or sedatives because they are too dangerous and not a long-term solution. The sleep doc wants Iris to just grow out of it the apnea. Actually at this point since I’ve almost totally given up on a fix – I just want her to grow out without intervention too. But there are two problems- she’s not growing and her parents are falling apart without sleep. “What the happens now?”
I heard the clinic down the street does pediatric accupuncture and I struggle between thoughts like that and wanting to try going head-first into radical acceptance. If I stopped fighting sleeplessness and stopped grasping for sleep, might this problem go away? I still have no idea what sort of problem this is for Iris- I don’t know what its like for her. And as for me, I still haven’t figured out if this is a physical problem or a spiritual one.