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.

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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.

Loss and Redefintion

My lifelong relationship with loss began when I was almost 10 with my elder brother, Chris’, cancer diagnosis. He battled non-Hodgkins lymphoma for a year with a grace and courage I admired from afar, as he was frequently many miles away at Stanford Hospital. It was a fearful, lonely time as my parents were rightfully consumed with the care and comfort of my brother. Intellectually I understood their absences, but my emotional confusion was ever-present and horrifying. I floundered in the dark. I longed for my family, my parents, my brother. My normal life. And answers to unutterable questions.

I spent my days, engrossed in school grasping at things that made sense: spelling, grammar, history, French, science. At the same time at home I tried – against my younger sister, Katherine’s will – to mother her and be solace to our mom who fell apart. My friends, their parents, my teachers, and our relatives on some level knew what was happening within our family, but no one brought it up. I lived two lives: one of denial and hope for normalcy, and the other witness to the disintegration of my brother coupled with the frailty of healthy individuals and a bereft, disengaged family.

Chris’ death brought new pain and a deeper sense of loneliness. Grief is intimate, defining, and isolating. I’ve embraced self-definition as a sister of my dead brother, a daughter adrift, an inconstant sister to my sister, a soul forever wandering in internal chaos. Wondering what my life would have been if Chris had lived. If we hadn’t suffered.

The many deaths since then of: my favorite aunt and best friend; my wonderful Irish caretaker and surrogate grandmother/mother during my brother’s illness; my maternal grandparents who I was blessed to know will into my late 20s; and my father- and brother-in-law, have at times exacerbated my sense of isolation and sadness.

Yet, I am fortunate. My family stuck together despite my brother’s illness and death. I am able, more or less, to manage my lifelong depression. I am loved and love deeply. I have a second chance at the happy childhood I longed for. I laugh to my core with my children, embrace them daily, hold them close, and acknowledge the gifts they are to me. And try to counter my loneliness with the fullness of their love and sparkle.