I'm back after a nice hiatus. Okay, not at all a "nice" hiatus, but a necessary one nonetheless.
I noticed that the last time I blogged was November 7th. Well let me describe life as of the 10th of November:
It was a balmy and warm day on the 10th, and I took homemade pink (strawberry-flavored) and white (vanilla-flavored) cupcakes to my daughter's school at lunch so we could celebrate her birthday. We were celebrating early because on the 11th she went into the hospital to have surgery. The 11th was the last day she walked, by the way.
Now let me skip to the ending for a minute and mention that she is not paralyzed. Atrophied, but not paralyzed. Let us return to the story.
On the 11th of November my 6 year old daughter was admitted into the hospital for a 5-in-1 surgery that would completely rework her bladder and bowels to theoretically improve her continence and allow her a more "normal" life. It would also save her kidneys; her left kidney was scarred and functioning at only 23%. And it would minimize her bladder/kidney infections, of which she has always suffered chronically. Oh, and it would allow her bowel maintenance, something she has never had. Some neat side effects would be decreased pain and discomfort, increased health... little things like that.
So on the 13th she went under the knife after two horrible (unimaginably horrible) days of bowel prep. She also went in just under the wire as her previous two days came within one hour of being unsuccessful for surgery. But she made it and then I spent 17 hours waiting.
Yes, seventeen hours, she spent in surgery. It was 1:30 in the morning the following day when the surgeon called and said she was in recovery and headed for the PICU.
She quietly entered the PICU where she slept peacefully. They kept her under for all of that day (the 14th) so she could rest after such a long surgery. On the 15th, all hell broke loose.
She had been interred (on a ventilator) until the morning of the 15th, and at that time they took her tube out of her throat so she could breathe on her own. Her lungs collapsed later that afternoon. I stood at the foot of my daughter's bed in the pediatric ICU and watched her drowing on the fluids in her lungs. I watched her pulse-ox (amount of oxygen in her blood) drop to 40% before they got the tube back in her throat. I was watching her die, and I could do nothing but stay out of the doctor's way. She was re-interred, stabilized, and put in a medicinal coma for the next 60 hours.
On Saturday the 18th she was allowed to come to a bit and eventually had the tube removed again. This time she did fine. By this I mean that she was able to breathe on her own, not that she was fine.
Somehow, that little girl came home on Thanksgiving Day. You call it what you will; I call it a miracle.
Her weakness was a trial, and carrying her everywhere with three tubes extending from her abdomen, two with foley bags attached, was a trick. Tending all her medical needs -- her new ones as well as her old ones -- was time-consuming, mentally exhausting, and emotionally draining. Tears were no absolution, so there was no point in crying.
But looking at her was like looking upon a wise sage. She had aged so much in such a short time. Not because she turned 7, although she did, somewhere in the middle of all of this, but because her understanding of her own body, how medicine works (doctors, nurses, hospitals...), and the extent to which hurt can happen in the name of progress was now more deeply ingrained in her than ever before.
I've always promised my daughter that I'd never let anyone hurt her. I ask her if she believes me, and she assures me that she does. Hugs and kisses follow and much comforting cuddling.
Then I let "them" carve into her abdomen and change her entire world. Explaining that I did not let them hurt her, as it was necessary for her to get better, to a little girl that was hurting was absolutely a lie and unacceptable as an answer.
She no longer believes me; not like innocent children blindly believe their parents with unwavering love. She just knows that they did, in fact, cause her to hurt. It has been the most sobering realization of both of our lives.
November rolled into December unnoticed. The tears are still no absolution, but at least I'm more willing to let them fall now. My daughter struggles to regain her strength, and her sanity - to some extent- and I struggle to regain her trust. Every day she sees her belly with it's incision scars and is reminded that I let them do this to her. It will be years before she understands why, if she ever does.