So this past Thursday marked 5 weeks since Lucy had her bloodwork drawn. We heard back about the blood part of her metabolic test and it was normal, but we have not yet heard about the urine part of the metabolic tests and not surprisingly we have heard nothing about the Angelman's test yet. And so as the title implies, we are just maintaining. Trying to get through each day without breaking out into a sobbing, hysterical mess of impatience. I have been surprisingly calm and I believe that just to make it through all of the waiting I need to stay that way. I haven't even written on here in two weeks because I think I am feeling like thinking too much could be too dangerous. I have teared up a little here and there, but nothing major.
I have a quote to share from one of the wisest books I've ever read and that I read to Lu often:
"But I've bought a big bat.
I'm all ready you see.
Now my troubles are going
To have troubles with ME!"
-Dr.Seuss, I Had Trouble In Getting To Solla Sollew
Something I have been thinking about a lot lately is Lucy's "big bats", me and Chad. Her troubles are going to have troubles with us! This past week I have literally felt like a bat that was constantly swinging at people who love us and mean well, but that often bombard me with feelings, advice, opinions, denial, etc. I have been noticing that while all three of Lucy's therapists are wonderful and competent, they often have varying opinions on what is appropriate for her and I am the one left to sort out how everyone feels and what is right. OT said she had heard that some speech therapists carry balls for bouncing kids on to help promote speech. Our primary speech therapist said she's never heard of such a thing. PT suggested a weighted vest and OT seemed to think that was a dumb idea. OT says some things are good for Lu to chew on and the feeding specialist says all different things for chewing! Sometimes people act like Chad and I are jumping to conclusions about the likeliness of Angelman's syndrome, even though a pediatric neurologist who specializes in movement and development said he feels it is what makes the most sense in his opinion, but he is of course not 100% sure. And so again, for all of my loved ones who read my blog, I know everyone means well, but I just get so overwhelmed sometimes by everything and everyone and this past week was one if those times. Do this, don’t do that, why do you think that, proclamations of sadness, try this, no don't try that, try this, well what does this mean...are you sure? I'm not freaking sure of anything yet!
I take that back, here some things I am very sure about: this week Lucy stood for a couple of very brief, but amazing seconds all by herself! Not even leaning on me or holding my hand! She also made the sign for book 5 times when asked during speech. And during Kindermusik when we were singing Giddy Up Horsey and everyone was raising their arms up, Lucy picked up on it too and was picking her arms up at the right time with only a tiny nudge under her armpits from me. All of those things are absolutely magical to Chad and I, even though they may seem small.
I know how much all of our friends and family cares for us and that they just want to help and the therapists too, and I don't mean for this post to be mean in any way. I'm just trying to express how difficult it is sometimes to not want to freak out at the volume of information, opinions, and instructions that are given to me on any given day. Personally, I think I'm hanging in there pretty well, not to toot my own horn. I just try to handle each day as it comes and do my best to hold my own amidst everyone else's thoughts. So as for being Lu's bat, I take that very seriously. I feel as her bats, one of our most important jobs is to think through very carefully any decisions that need to be made and decide for ourselves what we think is right and best for her and not simply just do what is most common or expected of us. Like she is in a fortress behind me and I stand at the drawbridge [bat in hand] and then I sift through what and who can and cannot go through. Chad too of course, but I am mainly in charge of the drawbridge while he is working. One at a time, slowly, with a lot of thought. And that is one of the most important parts of "maintaining" these days.