REVERB1 STAFF   
steampunk and synthesizers
b l o g
2 blog comment
Type of Optimism
Posted by: Ren at 10:56 am on October 2, 2009
Mood:
Sorry; it's been harder to get back into the swing of things than I anticipated.

So let me try and catch up here.

A little over a month ago, Jillie started complaining of low level stomach aches, lethargy and her appetite pretty much vanished. She got pretty skinny over just a few days, was voraciously thirsty, and started using the bathroom a lot. We didn't think TOO much of it, but after a few days of this we all got concerned - including Jillie - so we took her to the doctor.

They checked her blood for potential infections, and had her do a urine test (which she hadn't studied for and still did quite well on) and found a higher-than-expected sugar content. So they did a blood check for blood sugar, which came back as 477 (compared to an average target of 80-120). We were then sent to Seattle Children's Hospital, which confirmed the diagnosis - Jillie has type 1 diabetes.

Now, I had no idea what it really was - not the differences between type 1 and type 2, not really anything at all about it. My first response was, I understand, fairly typical. I broke. I thought of my little baby having to find out that part of her body was just not going to work anymore, and that as a result of this, she'd be on a lifetime regimine of blood checks and insulin. But I had to swap out with Lizz at least once when holding Jillie for the IVs they had to put into her hands. It's just impossible to stand by and do nothing while your child cries in pain - even when that pain is being caused by something which will help.

Single most difficult moment of my life thus far.

Type 1, apparently, is genetic - a defect in the genes themselves and not one of environment or development. So to all the people who look at my diabetic daughter and wonder if maybe we should've fed her healthier foods or something, well that may be the case, but one thing's got nothing to do with the other. I don't know why that should matter to me, though. At least, it's not like I honestly care what you think about me. But I would hope I'll never have to catch someone looking at my daughter like she's somehow responsible for this, or "well, if only she'd taken better care of herself..." Yeah, you really don't want to go there with me. The other day, one of the vets responded to my mentioning the type 1 as "oh, that's too bad. Kids are getting that sort of thing younger and younger these days." and I smiled pleasantly and reminded myself that he was there to take care of my dog and he probably just didn't think before he spoke.

The next few days were pretty intense; working to find a balance for her blood sugar and teaching us how to check her blood sugar levels, eat right (in order to help the insulin treatments be effective), give shots, etc. Lizz stayed in the hospital at night while I made daily runs back home to take care of the animals, clean up around the house, bring back clean clothes and try to pretend that I didn't want to keep collapsing under the realization of this new thing in our lives.

Jillie will be on insulin for the rest of her life, unless a cure is one day discovered. Maybe it seems like I'm overdramatizing this, but the reality is that I need to write it, say it out loud. It will help make it a real thing for me. Honestly, it's just a "thing." Everyone has one of those - the thing that just is a part of your life and that cannot be changed; often tied directly to your own sense of mortality.

I drove home one of the nights, screaming out into the universe. I realized that I didn't want to hear anyone try to console me with "god has a plan" platitudes, because I discovered that if it was in some big eternal plan that my 8 year old daughter should have to get something like this... well, then this "God" chap and I were gonna have words. It also gave me a really interesting opportunity to evaluate my feelings on a lot of religious-based issues, but I'll jot those down at another time.

By the third day, I was adjusting better to it. We heard a great term - "the new normal" - which has really stuck with me, now. I came to learn that although diabetes is a nationally protected disability, people with type 1 or type 2 live good, strong, healthy lives.

Meanwhile, Jillie was making friends with... well, pretty much everyone in the hospital. She just has that innate talent to do that. I'm so impressed by her. But not as impressed as I was within a few days when she was doing her own blood tests, and even giving herself her own shots (not every time, but honestly doing even ONE really made me the proudest dad in the world).

I'd like to also do a shout-out to the Seattle Children's Hospital. It's just... amazing. The staff was excellent, the surroundings were great, and they really just made us feel good about being there - in spite of the $13000+ bill we looked at later (all but about 2000 is covered by insurance, thank god). Lizz tells me that the night nurses were all very cute, which now makes more sense as to why she wanted me to go home each day and take of the dogs and cat. Nice. :)

Note: One of the nurses told me I looked like Andrew Zimmern, though, so I don't really suspect sending me home sincerely would've made a difference. Are there that many women lusting after that kind of look? Shaved head, overweight pasty white middle-aged man? Yeah, I didn't think so. I think I'm safe, thanks. :)

It's funny how things just kind of settle into a rhythm. Blood checks in the morning and evening, before every meal or as necessary (including at 3 in the morning) and dual insulin shots - short term and long term insulin to normalize her normal blood sugar and assist with the processing of the handfuls of sugar carbs ingested from pretty much everything sold and packaged as food. But we're making our way.

Somewhere along the line, my back started hurting, and my efforts to make it NOT hurt somehow ended up with my tweaking my neck to the point of near-immobility.

So it was back to the doctor, this time for me. I got pills, advice and, two weeks later am almost back to normal. Normal. Huh. That's such a weird word now.

One other nice element of the past few months has been a serendipitous reconnection with a lot of old friends - some stretching all the way back to high school days, in fact. Thank the gods for the internet. In some of the cases, its almost like a little emotional time capsule - - - but in some of the cases, I've rediscovered (or uncovered completely) good friendships that time has somehow not only not managed to erode, but has even miraculously increased.

Or perhaps made more timely, more relevent, more resonant. Don't know.

What I do know is that the past few months have brought a lot of the disparate parts of my faith - both in people and in faith itself. I found that in some cases, my faith has been misplaced; whereas in others, it hadn't been placed at all. Also, Jillian has come away from this with a level of strength that - when not made into Crazy by the occasional bout of bedtime high sugar - dazzles me to the core of my soul. Bravest person I know, hands down.

I'm not saying this was all part of some big plan to teach me to trust people again, or to put my faith in order. I'm just saying that I can at least glean one or two positive results from what I can see as an otherwise pretty difficult challenge.

And, honestly, I don't need more than that - and even if I did, well, I think this is as much as I dare ask.
big_daddy
Big Daddy The Folk Singer | 10/02/2009 | 6:00 pm
It's nice to see your words back here! I can give you lots of back advice, if you should want any.

urbancoder
Patrick | 10/02/2009 | 5:58 pm
Welcome back.