Monday, July 12, 2010

This life of ours is complicated

I understand that some people don't get our life with a special needs child - that the day in and day out realities are just too far from their experience for them to grok the situation.

You'd think my mother wouldn't be one of those people.

I mean, she's been a therapist. She's been here more than once to visit, and for more than a day or two at a time. She's been a foster care worker, and had caseloads that involved organizing services for special needs kids.

But from the very beginning, she's been incapable of really understanding what we live with. In the NICU it was "oh he's fine - what are you upset about?" when Acorn had a bad blood gas, went back on CPAP full time for the second time (downgraded from a nasal cannula of oxygen), and started lasix to help prevent heart failure.

Last year it was, "oh, don't worry about germs, all kids get sick" and "oh, he'll figure out eating when he's ready - not all kids eat solid foods right away" Yes mom, but not all kids end up in the ICU when they get a cold, not all kids are home on ventilators and in precarious lung status before they get sick, and not all kids have had tubes in their mouths for months at a time, missing the developmental window for breastfeeding to be a reflex, and then have a trach to deal with.

This trip...this trip's failure to understand involved time.

Between Acorn and I, we had 9 appointments during my shutdown week (ie, forced vacation) - while I totally respect the concept, I'm hurting for days to get doctors appointments in this year, and giving up 4 days of vacation because my employer demands it is painful. She followed us to Acorn's appointments, sat and graded assignments for the college class she teaches while I ran to my appointments.

She's on a quest for "spirituality" (and as a Pagan, I totally respect that, though as a priestess, I wonder about her choice of timing and her reasons for looking now). Now that some political things are out of the way, and my brothers and I (and Acorn) are enrolled members of the Native American tribe she and her family belong to, she wants us all to have a naming ceremony together. A cousin of ours will do it, and is known for his ability to ask Great Spirit for the name for the person he's naming. I think it would be very nice - a nice rite of passage, and a memorable thing for us all.

Now, these things take planning. Lots of planning, because a give-away is required, where you give gifts to everyone who attends, and have a feast. So, she gets it in her head that we should do it this fall, or maybe next spring. And a part of me thinks she wants it this way because (a) she knows her mother won't support her in providing anything for the ceremony, and (b) she's a college student, so spreading the responsibility for paying for the giveaway is a benefit to her.

I explain (for about the 10th time this week) that I do not have vacation days available to travel to South Dakota this year, and may not have them next year (given that even if Acorn is decannulated, we'll still have follow up appointments for some time). The only time I would have available in the next year is Winter Shutdown (i.e. Christmas Break) and Summer Shutdown (i.e. 4th of July break). And that I didn't think winter travel was a wise idea, given the weather in South Dakota. That it's a 2 day drive (minimum) for us, or 9 hours combined flight time (including layovers, and not including security, getting the rental car, etc), so it's not really a weekend trip for us either.

Oh. Well, that puts a damper on things - it really limits her options, and complicates things.

Yeah. Her life is soooo complicated.

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