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.