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.

Dizzy with It

Wow, what a summer. Charlotte has had some grand adventures with T1D on board thanks to incredible people who, perhaps hesitated, but ultimately felt that Ms. C needed and deserved adventure and empowerment. We all wish these things for our kids (or should), but having a chronic autoimmune disease that sets your child forever apart, dependent, and vulnerable is something most parents never consider. I am undeniably envious.

I’ve never been a worrisome mother; kind of astonishing since my elder brother died when I was 11. Rather, I’m a bit lackadaisical, eager for Max and Charlo to experience and learn from what comes their way. Yes, the good and ugly. I love spontaneity, but T1D has changed my ridiculous embrace of non-planning, non-focus, non-whatever-I-believed before. This is new territory for me. There is so much to consider now, it’s dizzying.

From stocking Charlo’s ever-present T1D kit daily with adequate needles, lancets, alcohol wipes, blood glucose meter, test strips, glucagon, and fast acting sugar for potential lows; to writing a 504 plan for school – a plan that designates her as a child with a disability (kick me now); to educating new teachers about Charlo’s imperative, life-saving T1D management (a clear source of annoyance to our principal); to buying not only school supplies but the juice and snacks that need to be stocked in Charlotte’s classroom in case of a low; to researching insulin pumps and continuous glucose monitors; to remembering all the things I need to keep going for Max; these things and so much more weigh on me. Whew.

Oh, and I need a job.

For this moment right now, I am going to be quiet and breathe. No, I’m turning on P!nk’s Raise a Glass, a feisty tribute to individuality and difference, and shaking my booty. This moment is mine.

Measure of Control

Paralyzed. That’s how I feel these days. Unable to shake thoughts about Charlotte and T1D. They are merciless, ever-present, and sorrow-inducing. I rifle through diabetic cookbooks, dog ear pages, but can’t bring myself to make a list of the groceries I need to make a T1D healthy meal. I’ve placed calls to insulin pump manufacturers, OmniPod, Animus, Medtronic, Tandem to get information about the very expensive products I’m told will change my daughter’s life (as if it weren’t forever altered now). I hesitate calling them back. I walk the aisles of supermarkets dazed and overwhelmed by how poisonous food can be to someone whose pancreas doesn’t work. Maybe this is denial. Just another stage in the the grieving process. But I’m registering this new horror.

Today, we go to Charlotte’s first endocrinologist appointment since her diagnosis and hospitalization at the Randall Children’s Hospital three months ago. I’m ridiculously eager, even giddy, to see Dr. Snyder, a disheveled man dedicated to keeping T1D kids alive and healthy. A monumental task I’m well aware of now. Charlo thinks I’m nuts.

I don’t know how Charlotte feels about seeing her endo. She’s internalized all emotion about her T1D which worries me. She won’t open up. The only key to her emotions is increased thumb sucking and meanness directed at me. Maybe she sees how angry and overwrought I get and has decided she doesn’t want to look that ugly. Be that out of control – or at the mercy of T1D. Smart girl. She’s always been about control and knowing herself. As a baby, we used to try singing her to sleep, but she would defiantly point at the door: “Get out!” And we would cower, leave, and feel disappointed. Yet thrilled at her confidence and verve.

That strength is a blessing and a curse. It means she embraces the only control she has now by pricking her little fingers and injecting her insulin multiple times a day. It also means being stoic and keeping at bay the complex feelings she must experience. I know they will come. And I will hold her close and validate every one.