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.

Our Arsenal

Charlotte’s first sharps container is full after two months with Type 1 Diabetes (T1D). Overflowing with used needles, alcohol swipes, test strips, and lancets. My daughter’s biohazards. It’s a fraction of what we really use to maintain her life as these damn artifacts inhabit her bedroom desk and floor, our car, and are strewn about the house. Underfoot. They defy enclosure which pisses me off. They demand acknowledgement as if I’m not aware every second of their new imperative for Charlo’s survival. I know these allies are everywhere, inextricably a part of our life now. But I wish they would disappear. Wish we could go back.

Part of our army: pen needles, insulin, and lancets.

Sigh. Lots of them these days. Navigating the health insurance world is harrowing, frustrating, and a time suck. I just learned after five years with the same insurance provider that ‘pharmaceutical’ insurance is different from ‘medical’ insurance. And that my mail order for Charlotte’s test strips and lancets (we use an average of six a day) and pen needles (four a day if we’re lucky) was cancelled. With no phone call to let me know that what keeps her alive is being held hostage. I’m frantic – we’re running out of supplies.

Drawer dedicated to our T1D arsenal

So I take a deep breath, get my fire up, and reach for the phone to figure out this new conundrum. I think of Charlotte and her courage when I get overwhelmed. And I’m thankful for hilarity, compassion, and love. They are more than armor, they are lifeblood.

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.

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.

Prick. Squeeze. Measure. Inject.

Salacious title, eh?  At least to my oft-in-the-gutter mind. A bawdy romp broken down into crass elements devoid of steam and emotion. I wish. Rather, this is my nine and a half year old daughter, Charlotte’s, routine at least five times a day (including 2:00 a.m.) since being diagnosed with Type 1 Diabetes (T1D) three weeks ago. That would be March 22, 2012. Ridiculously amusing that there are so many twos in this date, as my last post was all about the auspiciousness of ‘2012’ the number and year. Instead we got angst and chaos: a chronic autoimmune disease for which there is no cure. Harrumph and holy hell.

Charlotte tests her blood glucose level by pricking a finger, any finger (hooray! she has ten), squeezing a salty drop of blood (heaven forbid she’s got a cold finger), and feeding it into a meter that discharges a number within five seconds. Her blood glucose number dictates everything and how we react. Low (anything below 80)? Chug some juice, Charlotte, because a low might make  you lose consciousness and have a life-threatening seizure. Sit tight, don’t exercise, and check your level again in 15 minutes, maybe again in another 15, and have a snack – if your level goes above 80. High (anything above 180)? Correct with an insulin injection. Normal? Non-existant.

And that sums it up. No normal. Charlotte’s insulin injections change multiple times a day based on what she eats, her stress, ever-present exuberance, hormones, exercise. Pretty much everything. Imagine your child shooting themselves up with anything multiple times a day. I almost can’t bear to watch her insert the little needle into the “fat” on her tiny arm. It’s absurd. Here is a being whose body is killing what enables the rest of us to eat and make energy – insulin making cells. They won’t revive, come back to assert themselves, dance a happy jig. Give major blessings to your pancreas; my girl and countless others with T1D have a pivotal organ that doesn’t work. They are dependent on expensive medicine and rigorous self-management. Forever.

While I have found strength and purpose that waned since losing my job, I’m furious and bereft. Incredulous. I suppose what I always imagined as a blog about my experience as a surviving sibling of a brother lost to cancer will now be one about the survival of my daughter and our family, our growing new T1D community, our stresses and triumphs.

F#** and a new call to action. Pricks, measurement, and injecting always were about partners. Measurement was and will be about me. And the survival of my daughter.

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