For us I think it has always been a question of "when" and not "if" we were going to move forward with her surgery. I'm confident in the ophthalmologist we have out here, and was appreciative of his willingness to entertain my (at times slightly accusatory) relentless questioning. After three additional follow-up visits for questions, he [the doctor] and I agreed it was the right thing to do - and this is what gets me - for her "quality of life." Gah! Is that not the most horrible phrase? I always associate that with terminal diseases and Morphine drips.
It is true, though, I suppose. We have no way of knowing how much of her vision affects her motor skills, although we have some pretty good assumptions. She has immense difficulty seeing the ground right in front of her, which has led to some spectacular falls off of curbs and steps and playground structures and seemingly innocuous concrete cracks. When she's tired and wants to read a book, she has to tilt her head at an almost impossible angle.
But it's still surgery and we're still making this huge choice for her, and it's technically elective. When she was itty bitty and she had to go through all of these invasive procedures, it felt different making the choices. She had no idea, and I was certain she would never remember (and the stakes were higher, too -- how could we rule out the tumor if we didn't do the scans and the tests, et al). Now there's a chance she will remember, or at the very least, will be scared and look me in the eye when we show up and TELL ME that she's scared (note: As of now, I refuse, as I have in the past, to be present when she is sedated. They should make a sound-proof chamber for the Moms to sit in so they cannot hear anything). No more assuming she's a blissfully unaware baby. There is nothing blissfully unaware about her. How do I explain it to her? What on Earth can I possibly offer as a bribe for going willingly? I have never felt so responsible for another person's life and livelihood as I have coming into this. Making sure they're fed and clothed and learn their ABCs seems inconsequential. A monkey could do that! (Welll, maybe only the nice, smart mama monkeys).
And then whenever I get super freaked out that I've made the wrong choice, I remember that Matt, the person who generally dislikes and distrusts doctors and questions the medical necessity of a finger prick, thinks we're doing the right thing. Which means I can always blame him afterward. (Just kidding, sort of.)
But although this whole eye situation up until now has literally been the bane of my existence (and although we have no idea, really, what will happen after the surgery) I feel sad that we are taking away something that makes her her. And I feel like such a horrible person for saying that! At first I was all, "Remember how outrageous it was when SJP removed her mole? It wasn't her any more! Terrible choice." and then I scolded myself because I have to remember we're not doing this just for cosmetic reasons (and even if we were, it would be OK; I'll get to that). What we were doing is more than just cosmetic for Bug. So then my reticence turned into something akin to, "Oh, we can't get rid of that third, useless arm she has that's constantly in her way! It's so cute, and it's how I can always find her at school pick up." As if my emotional needs (and since when, again, am or should I be emotionally attached to a condition that has literally CHANGED MY LIFE but not in a positive, Oprah kind of way??) should come before her functional ones.
BUT IT'S ELECTIVE SURGERY OMG OMG.
I know of other mamas whose children have had to endure much (MUCH) riskier surgeries that their babies needed to survive. And I'm thankful that Bug's doesn't require her skull to be completely cut open or her heart removed from her chest, because I'm pretty sure that much Xanax would be lethal.
One of the mamas at Stroller Strides (whose son had one of the skull surgeries) said to me about Bug's surgery, "Think about if she had a cleft lip. You wouldn't need to fix that so she would survive, but you would anyway, because it is still important. How other people perceive her and how she perceives and loves her self is immensely important. It's not shallow to want to give her the best chance and go at life. The reality is that things like that do matter, and it's OK."
And she's right, which is why it's still scheduled, and why I need to find myself the most legal amount of Xanax possible.
I'm trying not to have any expectations AT ALL for after surgery (other than that she emerges healthy, of course). School will do all of her re-assessments (due at this time anyway) after her surgery to see where and if she still qualifies. Our little nut is a tough one to crack. I want her with her "mainstream" peers, because cognitively she's off the charts, but I don't want to forget that she physically does still struggle. It's a tricky, tricky game to play. You don't want them to qualify for services but you DO want them to qualify for services. Her current teacher thinks that we can probably swing an adaptive PE specialist to work with her in school once she's 3 (that is, if we ever decide on where we're going to send her come April).
Today Bug and I skipped "running with friends" (what she calls Stroller Strides) and ran ourselves in Mission Beach. Afterward we met up with a good friend and had coffee on the beach while Bug ran around like a maniac. We were talking about jobs and future plans and she said to me, "I figure we'll keep doing what we're doing until it stops working for us, and then we'll figure out something else that does work." And I decided that is my new mantra, second only to, "It is what it is."
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