Shock Baby

Shock isn’t momentary. It can last a long time. I’ve been managing shock, often with grace and sometimes with ugliness, this past year – holding it, caressing it, disdaining it, wallowing in it, but never coming to peace with it. A year is a blip some say. But when every day, every moment, every bite my daughter eats, makes me painfully aware of the precariousness of life, it’s a damn long time.

I haven’t written for eons; I’ve been immersed keeping Charlotte alive and thriving, and Max engaged and knowing how great he is when the energy of a family is spent unfairly on one child whose life is in peril. And I don’t say that lightly. My girl can’t live without costly insulin and the devices that administer it to her 24/7. People tell me I’m lucky, that we can manage T1D. That it will get easier. Sigh. A chronic autoimmune disease for which there is no cure, which makes my girl dependent on a regiment of taxing self-monitoring, insulin administration, and constant vigilance is not easy and it never will be.

My girl’s every new experience demands I educate and advocate, making sure people with whom I entrust her have minimal knowledge of how to help her if she’s low or high – or heaven help them, comatose. I loathe this process. Instead of feeling empowered that I’m passing along pivotal information, I worry that people will be overwhelmed with the responsibility of Charlo’s life. And I know that despite best efforts, they don’t really get ‘it.’ The relentlessness, the long term health risks of highs which are numerous and heady, the fact that a lick of a brownie-batter-covered spatula, a banana, or a small handful of potato chips will send her blood sugars crazy high unless she compensates with insulin. Something she needs to do BEFORE said delicious morsels pass her lips. Not easy for a 10 year old.

A couple weeks ago, Charlotte slept with her two dearest friends on the trampoline under the stars. Awesome! I’m thankful that she was confident enough to do it. But, I worry that she won’t wake up. That her sugars will drop to perilous levels. That she will die in her sleep. Not a bad way to go, especially if you’ve lived a long life. But she is ten. My baby, whose resilience and fortitude are unparalleled. And shocking.

She is at ‘normal’ camp this week. For kids like the rest of us whose bodies work as they should, yippee! And for my girl, whose body is her enemy, whoohoo! You rock. And likely my shock and heartbreak won’t end. My admiration for Charlo and Max, who quietly deals with so much, is boundless.

Acronyms: T1D and AYFKM

“Are you f-ing kidding me (AYFKM)?” Jasper suggests this is my new mantra since Charlotte was diagnosed with type 1 diabetes (T1D) five months ago. And he’s right.

Two UPS packages arrived yesterday. Charlotte and her good friend Harper were excited to know what they contained. AYFKM: not the Lands End messenger bag Ms. C ordered on my debit card unbenownst to me; not the Patagonia retro swing jacket I covet deeply but can’t afford because chronic autoimmune disease management costs money even with insurance; not the publishers clearing house stack of dough that would make our life so flamboyant we could take Ms. C to Europe for T1D management that is ahead of the US and satisfy my desire to share and experience the world with my children; not not not.

Instead I opened the boxes with a sigh of resign and relief. Here are a portion of Charlotte’s life saving paraphernalia for the next three months: a heady army of needles and 750 blood glucose test strips. My daughter unflinchingly goes through an average of six strips a day – that’s six finger pricks a day folks, 6×30=180 a month, 180×12=2,160 a year, baby. Our endocrinologist says we only really need maybe five a day, but AYFKM, we’re new to this and every bite, sip, new experience for Charlo means we check.

This s*&^ is scary. If my girl nonchalantly drinks a glass of lemonade at a friend’s house as she innocently did recently, she needs a boost of insulin as her blood sugar (BG) will rise due to the carbs in the juice. AYFKM? A high BG today adds up over her lifetime and makes her predisposed to eye and kidney degeneration, loss of limbs, difficulty with pregnancy, and a host of other things.

AYFKM and hip hip hooray we are Charlotte’s pancreas! There’ve been many a moment in my life when I’ve questioned my value, my role (especially in unemployment). No longer! I am a vital organ working tirelessly to keep a little girl alive and well. I mean really, being a parent is simple compared to this. Oh, I’m that too. AYFKM? One thing at a time, please.

But  despite the current trial, I am supremely lucky to have two superb, magical, resilient kids – with and without functioning pancreases. And no, I’m not f-ing kidding you . . . INFKY . . . I really am lucky.

Optimism and Benchmarks

Past heartbreaks made me who I am – a deep-hearted, sometimes wallowing soul, giving and always yearning for compassion, understanding, and completion. This T1D heartbreak is making me a fighter, a learner, an advocate, the best mom possible, and more alone than I could ever have imagined. And I’m no stranger to lonely.

But, I’ll try to be optimistic today.

Benchmark: Charlotte had her first visit with her endocrinologist, Dr. Snyder, since her T1d diagnoses four crazy, long months ago. It was stellar. Thanks to a rigorous insulin (Novolog and Lantus) regime, she has regained the weight she lost due to her disease, grew two inches, and has a very good A1Cof 7.7. (Her A1C at the hospital was more than 12 which means her blood sugars had been running well into the 300s for a long time without us knowing – ‘normal’ is somewhere around 4-5.) Our Doc thinks we’re doing really well and has approved Charlotte’s desire to get an insulin pump at only six months into the disease. We’re moving fast at the Hand house.

We have narrowed our insulin pump choices to two, the Animas Ping and OmniPod. Of course, Jasper and I differ on which ones we like. But really, it’s Charlo’s choice. She’s been wearing an empty, demo OmniPod for two days to get the feel of something attached to her body 24/7. It’s an external pancreas, really. Her lack of self-consciousness about the bulge that shows through her bathing suit astonishes me. She is at once damn strong, smart, mature beyond her years, and still the zany, booty-shaking wonder that makes me smile (and furious!).

I’ve contacted a family therapist with special experience dealing with people and families struggling with T1d since our collective stress has increased exponentially, especially mine. We are all effected and need support. Charlo has yet to demonstrate any emotion about her disease and I’m pretty sure it will come. Max (almost 12) has cried several times about Charlo’s T1d, which infuriates her. She can’t seem to tolerate any emotion around her disease. Which I get – only sort of. I suppose it’s hers to own and she’s like her Dad, very private. Needless to say, Jasper and I could use some interference from a professional as well; I am wrought with emotion, anger, and impatience. Not good.

Charlotte is still enjoying her T1d honeymoon, which means her pancreas is still producing some insulin making her insulin doses small. But it devastates me knowing that it will cease to work completely sometime soon. How weird is it to have a major organ in your body without function? Ugh, I said I wouldn’t got there today.

So, I’ll stop here. Optimism when dealing with a chronic disease can be tough, but the alternative is just damn ugly.