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.

Running with Purpose

Me and my fabulous sister, Katherine, post Beat the Bridge

Milestone. Yesterday my sister Katherine and I ran our first race for a Type 1 Diabetes (T1D) in Seattle. The JDRF run supports research for better T1D management, mitigating the long and weighty list of longterm side effects I’m slowly and horrifyingly learning about (kidney failure, heart disease, eye degeneration, etc.), and finding a cure. So we ran in honor of Charlotte, my nine and a half year old daughter with T1D. It’s all important, but let me be clear, we want a cure.

I am only eight weeks into Charlotte’s T1D but that’s what I want. Not a tropical vacation, though my weary body could use a dose of vitamin D. Not a new hybrid car, or better yet, Carmen Ghia, since my aging mini van doesn’t suit my zany, effervescence. Not a new swanky wardrobe, though I’d love to haul most of what I own to the Goodwill. Simply a cure.

So we ran the 8k with a real purpose and sponsors behind us donating more than $2,000 to the JDRF. Katherine ran like the wind with dedication, force, and zeal. But for me, each step felt oddly heavy. My usual gait disappeared. I couldn’t find my rhythm. It was infuriatingly hard. I could chalk it up to my general state of emotional upheaval or my eight weeks of restless, worry-laden sleep. But really, I think the weight of Charlotte’s disease overpowered me.

Don’t get me wrong. The sight of so many people running for family members or friends with T1D was inspiring. Truly awesome. But what struck me most was that I’m neither an onlooker nor a person immersed in philanthropy because I care. I was there and am here on this page because I have to be. My beloved daughter has T1D. And that won’t change.

Pre-race I was teary. Wondering about every T1D story behind each person among the more than 11,000 around us. And then it dawned on me: I have a new community of people who grapple with profound life changes and the heartbreak of disease. Who have a purpose – to find a cure for the people they love.

It didn’t lighten my step yesterday. But it gave me hope and inspiration. And helped me feel less alone. Especially in the company of my amazing sister who has wholeheartedly joined me in this quest. Here’s to the next run and fleeter feet.

Perspective Shifts & Heroes

While my perspective immediately changed the moment I received Charlotte’s Type 1 Diabetes (T1D) diagnosis a month ago, it is inconstant. Shifts like her blood glucose levels and insulin doses.

At home alone, I rage at the cruelty of disease, sob for her pancreas, and consume digital stories from kindred T1D spirits and advocates. With others, I am uncertain. Some people have been astoundingly generous with hugs, questions, and compassion. Many are kind yet perfunctory – not really wanting to think about something that doesn’t affect them. And some, surprisingly, won’t even catch my eye – even though they ‘know.’ All of which makes me teary and full-, though sometimes, heavy-hearted.

While Gloria Steinem has always topped my list of heroes, I have a wealth of new ones:

1) Heartbroken, stalwart parents who help manage their children’s disease, react calmly and efficiently to low sugar readings, advocate on behalf or their kids, try to compensate when their kids get an improper dose of insulin at school, and remain present for their other much-loved children. All the while, doing everything else.

2) Courageous children with T1D who are savvy, confident, strong, and possess an unparalleled sense of self-care and responsibility.

3) My little ones, Max and Charlotte, who are the most hilarious, compassionate, infuriating, smart, zany creatures I know.

4) My husband, Jasper, who remains calm and kind when my ferocious anger makes me a hellion.

5) My parents who underwent the unthinkable with my brother Chris’ cancer and death. Their courage astounds me.

6) And my strong, loving, adventurous sister who has always been been there for me, despite my foibles.

Disease is heady. It transforms each moment entirely. Forces me to be the planner I’ve never embraced and gives new meaning to flexibility. And opens new avenues for appreciation, community, and boldness. I don’t wish it upon anyone.