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.

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.