Immaturity Through IT

I’ve contemplated justifying my absence from this refuge, this space, but I will merely begin again and let the silence mean what it will without explanation. Too much to go back. Onward.

Two years living beside a beast, T1D, has been strange. It’s given time a new kind of meaning and punctuation. The moment so clearly precious, yet I don’t always embrace it as such. Seconds are often heavy and entangled with numbers (blood sugars, A1Cs, carbohydrates, insulin doses, the date of our next endo appointment), emotions (joy, anger, sadness, fear), and movements (finger pricks, pump changes, calls to medical suppliers, breathing). And others, jiggly with a mix of hope, inspiration, and immaturity. The latter (jiggly) is where I’ll rest today.

Max (now 13) and Charlotte (now 11) find it humorous that our family, as they put it, “is the most inappropriate of anyone they know.” Eyeballs regularly roll at parental antics which they deem the height of immaturity. Hallelujah, well done! We infuse our complex lives with humor (often puerile) because it feels good, especially in the midst of T1D and uncertainty. If Charlo’s pancreas doesn’t work, let’s cackle at the other untoward bodily functions that do! There’s a lot we take seriously (school, health, commitment, responsibility, community), but I’ve always found humor humanizing and stress-relieving. It’s connective tissue.

And immaturity? Well, the perpetual 11 year old in me, the one who didn’t get to laugh because of family tragedy, deserves to be heard. We are symmetry: I am her wise woman and she, my zany muse.

As for hope, I find a wealth of it in children and young adults who exude strength, grace, courage, and vitality despite what comes their way. More on that next.

So, I’m going to join P!nk and raise a glass (mine will be Diet Pepsi, thank you) to everything that makes us, us. Me, me. You, you.

 

 

 

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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.

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.

Embracing T1D, Sort of

Type 1 Diabetes sucks. Period. It is exhausting, nerve wracking, anger-inducing, humbling, and unnecessary. It sends me on a daily wild goose chase, trying to catch the illusive ‘good’ blood glucose level of my daughter, Charlotte. It forces me to sleuth out the often random causes of her high or low sugars. And obliges me to wake her up at 2:00 a.m. to prick her finger. I rarely get back to sleep, my mind awhirl with T1D. This little devil never leaves me.

But I embrace it; there is no other choice. And so, oddly, I am thankful.

Thankful that Charlo has the benefit of improved T1D management that rests on the care of so many people with diabetes before her. Thankful for technological advances like her insulin pen that uses a tiny needle to administer the crystalline drops of life rather than an ominous syringe. Thankful for the insulin that has stabilized her and enables her to be a happy, confident, zany kid. Thankful that we caught the disease before it damaged or killed Charlotte. And thankful that her spirit is undaunted.

We are fortunate in all of this to have terrific endocrinologists and T1D educators on our side; people with whom we connect on a daily basis to discuss Charlo’s numbers and walk us through the heady process of insulin adjustment. Our health insurance is a boon as the dollars of disease are dizzying. I can’t imagine having to decide whether to forgo food or insulin, a cruelly ironic predicament. And I have met incredibly strong women, fellow T1D mothers, who have generously embraced me though their lives are full and chaotic as well.

There are days when T1D overwhelms me. But then I look at Charlotte, only nine and a half, carrying this disease with grace, courage, and spunk. And I am thankful.

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.

Even-Numbered Years

Elvis Costello’s quirky, delightful duet with Sesame Street’s Elmo, got me thinking about my ticklish preference for even numbers. Especially the fabulous evenness of this new year, 2012. An even-numbered year feels auspicious, the two 2s audacious in their bookend flow. The motion of each 2 from a point set in the past, curling luxuriantly, then pushing adamantly towards the future at its end. I’m drawn to the momentum and positivity these 2s imbue.

While the last year held ribald hilarity, ever-deepening love for Max, Charlotte, and Jasper, and the re-emergence of deep, neglected friendships, my continued long-term unemployment coupled with my financial and personal insecurity were weighty and ugly. Like “2011,” its twig legs immoveable, welded to the ground. Unable to run, lacking energy, verve, and nerve.

I’m using the two 2s, clearly, as a daily symbol of movement and partnership. And balance. They represent companionship, not aloneness; the opportunity to join forces, collaborate, commiserate, bond, empathize, and embrace. Extend beyond stasis with a bended knee in motion, pushing molecules backwards with a zippy whish.

And 2 is a Cardinal numeral after all. So as a Cardinal, I grab onto these two 2s and the hope they promise, the symmetry they offer, and the momentum I need.

Here’s to double twos, a lovely pair, indeed.

French: par deux doubles
Italian: a due doppi
Estonian: topelt rühmades
Japanese: ダブル補数
Icelandic: tvöfaldur twos
Haitian Creole: twos doub
Arabic: ثنائي مزدوج