Wednesday, April 30, 2014

I guess where I'm going, is On.

If you've been reading for a while, you'll know how I am with anniversaries. I'm a big believer in observing days of importance, but not as something artificial or obligated. Actually it's better to say I believe that days of importance ARE observed, whether that's intended or not -- on a deeper level, sometimes unconscious, something in us remembers what happened a year ago, or five or ten years ago, and marks the day.

Avery was diagnosed on April 29 last year. Yesterday was a bit tough for us. Fittingly, I was up at 2 AM doing a cartridge change to try to bring her blood sugar down with fresh insulin. She had been crabby for days, sick with a virus, reacting to a booster shot, with her blood glucose perpetually over 12.5. It was wearing on her, and wearing on me...the constant weighing of variables, the hourly troubleshooting, the second-guessing. Is it a bad site? Is it that extra 6-carb Cadbury Mini Egg she had that we didn't bolus? Is it the lack of exercise from being sick? Is it just the virus coming back? Could that insulin be bad?

So D-Day carried a lot of feelings with it. Avery was a little down. She made two remarks about it: [grouchily] "I don't feel like going for a bike ride, I'm too high," and [gloomily] "I wish I didn't have to squeeze blood out of my finger and take insulin every single time I eat anything."

For my part, I spent the day moping around the house, crying at odd moments, for not much immediate reason. On most anniversaries, even of something bad, one is marking an event that ended -- time has passed since the occurrence, and one is in the process of moving on.

In this case, what we were marking was an event that started a new way of life: one that is different than before, and in a handful of ways better (improved diet, more activity) but for now, overall it's worse. Say what you want, be as positive as you like, but it would be better if we didn't have this disease.

Let me repeat that.


And she's going to have it forever, unless some genius cures it, and within her lifetime the cure can be administered.

Otherwise, this is the way it is forever.

So we were sad, and we were tired, and we just didn't feel good.

The story of life is that in order to survive all the shit that comes your way, you have to find happiness, hope, humour or joy in the small things. They don't actually outweigh the bigger, bad things, but at least you can have a laugh, or feel the tiny thrill of a tiny victory.

The insulin WAS bad. After the 2 AM cartridge change (which she didn't wake up for -- victory), she woke in the morning at a nice, calm, reasonable 7.5. Victory. Two hours after breakfast, she was 11, and then before lunch she was 8.2 with a little insulin still on board. Victory. She threw a fit about going to Pony Club last night, but once she was at the barn she had a great time running around finding chickens and checking on all her cucumber seeds. 45 minutes of exercise -- victory. Before bed, she was 9.0. So it worked. Relief.

Today I read a bit of chatter on Facebook about first-world problems; how funny we all are, debating our lipstick colours while children are starving on the other side of the world. Sometimes I feel inconsequent for lying in bed at night, thinking about whether or not to continue dyeing my hair -- grey is the current reality, after all. And how annoying it is that I have to buy 50 paper cups for giving my homemade ice cream to my friends, when I really only need 10.

Am I lucky? Sure. Am I blessed to be here in safe old Canada with an earning husband, a dental plan, more yarn than I can use and a pharmacy stuffed with insulin? Of course.

But we live the life that's in front of us: not the one that could be if only we were poorer. It's impossible and unrealistic for me to live in a constant state of weak-kneed gratitude that I have food in the fridge. I can be grateful -- and I am -- but I won't be racked with anguished guilt.

Because the fact is that, full of technology as it is, full of privilege and wealth, safety and comfort as it is, life is hard. Life is also sad. Full of loss. Full of disappointment. It's grueling. It's one foot in front of the other. It's wake-up-tired, make-do-all-day, never-make-progress, go-to-bed-too-late, lie-awake-worrying hard.

I'm not sure how to end this post. The writer in me wants to wrap it up with an inspiring paragraph about beauty in small moments. Stirring my tea. Watching the hummingbird tending her nest.  Or I could close with a list of little, quaint domestic actions that make me feel better. Hanging laundry out to dry. Braiding my daughter's hair. Either would be fitting, slightly positive (the break-in-the-clouds effect) and allow the reader to leave with a sigh of completion. It might inspire you to put a comment about how well we're handling the whole thing.

Instead, I'll carry on the way I started. She was 9.1 at 1 AM, but she woke up at 15 today -- last night's slice of pizza came on board in the early morning. She's gone to play with a friend, who always feeds her crackers no matter how many times I protest. She'll come home high and hungry. I'm tired, and as usual I'm way behind. Still haven't unloaded the dishwasher. I need to buy more test strips. Anna is due at the barn in two hours. The kitchen floor is desperate, and, bizarrely, I can't find the broom.


Anonymous said...

You nailed this one, Shan. You know these are always my favourite of your posts, honest and raw, it brings out the best in your writing.

Thinking of you. (And pondering where the broom went....)


lizbon grav said...

I love you, man. Don't sugarcoat it (ugh, bad term to use for this post); there's entirely too much of that in the world, and too much pressure to be uplifting, as if speaking the truth will somehow make it worse. It doesn't. It's like saying ouch when you get hurt - it helps more to say ouch than to pretend like nothing happened.

Anna said...

Sometimes, just getting up in the morning is a win. Maintaining is a win. Getting everyone fed, clothed, and to the places they need to be is a win. And tomorrow is another day.

oceangrl said...

Yes.. to the whole post.
Wonderful to see you and share some suspended moments from our worlds.
a visit again. soon.

Annalea said...

Your ending was perfect.

Because it's true.

Big stretches of life don't have breaks in the clouds. We keep on, and find things to rejoice in, even in the half-light . . . and my heart reaches out to you in what you're laboring in right now.

Diabetes can be improved dramatically, even cured. But it's all alternative medicine, natural remedies. I don't have firsthand experience, but I know one person whose sister has cut her insulin use in half, and another woman who told me she "used to have diabetes".

There is hope. Disease is a state of toxicity & lack, and when you supply what the body needs, it can heal. If you get to a point where you're open to this kind of stuff, feel free to drop me a line.

Hugs, Shan . . .

Susie Hewer said...

Haven't popped by in a while. First of all have a (((hug))) - life is tough, in different ways for everyone, and you don't always have to pretend otherwise. Second, keep dying your hair please (I can't remember the last time my hair went au natural and I shall be colouring it for as long as my arthritic old fingers will allow; then I'll go to a hairdresser). Third, KBO - that's keep buggering on and was a motto used by the late Winston Churchill. Oh and I love that little bird in your previous post - procrastination rules!!! Susie xxx

ssassefras said...

Shan, I came here from Dave H's blog. This post reallys truck a chord. I hope you've had some good days since then. Some days when it gets too hard, I tell myself that at least I'm bearing witness. You are doing more than that, keeping her sugars down. But you are bearing witness, too, and to be witnessed is something most everyone yearns for when there is pain.