22 January 2012

type 1.

type 1. by Luna Soledad
type 1., a photo by Luna Soledad on Flickr.
At least this one has a name. At least this one has some answers...

While most parents reel with tragic heartache, feelings of guilt and grief, and mourn the sense of normalcy and health for the child they’re suddenly told is no longer just like everyone else, the diagnosis of Type 1 juvenile diabetes was just another drop in the bucket for me... I went through that process long ago. And continue to live in that moment every day, mourning the life my special child could have had, mourning all that she could have been, should have been, had she been born “normal.”

That is not to say that I don’t adore my child in all her quirky, exhausting, pain-in-the-ass glory. That is not to say that I don’t celebrate her milestones, victories, and achievements, albeit delayed. And that is not to say that I do not adore my child and love her more than life; I do. But raising a child with profound special needs is a life-long mourning process - despite the blessings, despite the love... Mourning for a living being is a quiet, secret process that special parents do not dare speak aloud; it conflicts with the emotional programming we work so hard to maintain - that we cherish this precious soul, that there is a reason this angel was born to us, that she is just as deserving of having a good life as anyone else, and that we love her no less...  and we mean it, really we do. But to express grief over someone who we see and touch and love every single day seems hypocritical - and then we feel guilty about that too. So there it is, in all it’s ugliness; our big special secret.

There is not a special parent alive who wouldn’t cut off their right arm to make their child’s life easier... If I knew beyond doubt that my daughter could have the life of a typical 14 year old girl, painting her nails and texting boys and going to slumber parties - I’d saw it off myself with a butter knife.

Diabetes is nothing. Being insulin dependant for the rest of her life is nothing. Finger pricks, carb-counting, and 3-5 injections a day is nothing. I scoff at thee.

A few months back, we noticed that Bell was overcome with an insatiable thirst and peeing like a race horse. Naturally, the doctor wanted to rule out Diabetes... Diabetes? Ha. Are you kidding me? She weighs 60 pounds. She eats well, likes healthy foods, and gets plenty of exercise. Really? Surely, you jest? Turns out however that the doctor was right and I had a lot more to learn about yet another topic I never thought I’d need to know about...

The term “diabetes” is misleading when one considers that over 90% of diabetics in North America and Europe are Type 2 which, despite genetic predisposition, is generally preventable, and can sometimes even be overcome, with a healthy diet and lifestyle. Type 1 however, is an unpreventable autoimmune disease where the body wages war on the pancreatic cells which produce the Insulin needed to disperse sugar to the body’s tissues to burn as fuel. The healthiest person in the world can fall victim to Type 1 and, at present, there’s not a thing anyone can do about it.

It’s not been fun and certainly is not what I envisioned nor hoped for this new year, but Isabel has taken all this medical drama in graceful strides. Better than I ever imagined and most definitely better than I would have! --I firmly believe God instilled in me an irrational fear of needles to prevent me from being a Toredol junkie, not to mention, counting my carbohydrates?!! Cut back on pasta and rice and chocolate? Surely, I would wither and die.

While in the hospital getting Bell stabilized and learning how to do all this pricking and sticking, calculating and charting stuff from the nurses, educators, doctors and their gaggle of interns, I was horrified... and all I could think about was how I have failed miserably at every single fad diet that required even the most elementary of mathematical talents. Dear God, please help me not to kill my child!

Isabel, on the other hand, thoroughly enjoyed the rock-star treatment and being waited on hand and foot. She quickly figured out that a finger stick meant it was time to eat; never one to turn away from food, she was cool with that. And the injections, so long as she’s had her fill, it’s a small price to pay as far as she is concerned. The only rude awakening coming home for her was returning to a routine of doing stuff for herself.

True, I’ve been in survival mode; it’s what us special parents do. And there may be a moment somewhere down the road when I crash, the fog lifts, and I settle in for a brief pity-party (hey, we all do it, even those of us you perceive as invincibly strong), but for now, it is what it is and we’re all still alive... I’m even doing math.

About a week ago, I told Isabel that I was so sorry that this diabetes shit happened to her, that I hated that it was yet one more challenge and thing for her to deal with... I don’t know why this happened, I said to her, maybe mommie still has a few big important lessons to learn in all this... and in one of those rare and magical moments where the window of understanding is cracked just a wee bit and I am able to connect with my wonderful, beautiful, special angel girl, she smiled sweetly at me - the pure, good smile that lives in her soul and once in a great while, makes it out into the world - and signed, “yes.”

So I’m learning, yet again, and I’m grateful that it was just a drop in the bucket; thankful that this one has a name and some answers, because it’s a helluva lot more than I’ve gotten so far from anything Isabel.

Diabetes is nothing.
"We now accept the fact that learning is a lifelong process of keeping abreast of change. And the most pressing task is to teach people how to learn."
...Peter Drucker