My Rock

Today I came across a posting from a woman whose blog I follow. She has been a Type 1 diabetic for 22 years. I read her blog to get up-to-date information about new trends, equipment and research. But mostly I read her blog because she is very candid about her diabetes: the pokes, the prods, the beeps, the stares, the questions, the overwhelming feelings, the highs and how crappy they make you feel, the lows and how crappy they make you feel...it gives me some sort of insight as to how Kennedy might be feeling through all of this. While some days it is heart-wrenching, I feel that it is my job to read these things to better prepare myself so I can better prepare Kennedy.

I sent this posting to Ben, and I posted his response at the end. He is such a positive person and I rely on him so much,he is my rock, especially on the days I want to throw Kennedy's pump in the garbage and pretend that it doesn't exist. He helps me stay strong for Kennedy and I love him so much.

Post from the website: www.sixuntilme.com
Diabetes Fears
By Kerri Morrone Sparling

I wear it draped around me like an invisible cloak, one you can't see until I show you the sharp edges. This disease, this type 1 diabetes that you can't see or smell or taste unless I bring you in. It's my hidden disease, my quiet battle.

Look at me and you'll see my father's eyes. My mother's smile. You might notice the earrings I bought a few weeks ago, with the little moonstones. You might see that my jeans are hemmed because I'm slightly on the shorter side, or that my purse has a few little bite marks in the strap from where Siah nibbled on it as a kitten.

But look closer and you'll find my insulin pump, tucked into a pocket or resting in my sock. My fingertips, dotted brown from testing my blood sugar. My thighs, dotted red from past insulin pump infusion sets. My arms, dotted red and smudged from Dexcom's patch. A pattern of stinging stars on my body, left by diabetes.

Listen to me and you'll hear my loud laugh. You'll hear my off-color jokes and my foolish attempts at puns. You'll hear me talking fast. Or maybe you'll hear my music, either coming from my desk or my home or my car. You'll hear me talking about my husband, or my family, or my cats, or my much-loved nieces and nephew. You'll hear my passion, my ideas, my voice.

But listen closer still and you'll hear the quiet "boop beep boop" of my insulin pump, the gentle shunk of the lancet as it pierces my skin, the sound of the meter bag being re-zipped. And if I let you in, you'll hear the veiled tone of uncertainty when I speak about my future. Because it is uncertain—in ways that terrify me, in ways that I fear may be my fault, in ways I can't control because an invisible disease resides in my body and I can only live with it.

Its presence is folded into everything I do. My wedding dress was fitted to my form, but also to my insulin pump. A night out with my friends includes laughter, a few drinks, and someone gently asking, "Have you tested?" A kiss is interrupted by "you taste ... high." It explains so much of why I worry and why I work so hard.

We don't talk much about diabetes at home. Sure, there's plenty of talk about the blog and work and different projects, but the disease itself is usually held at arm's length. We understand how serious it is but can't face life with such a furrowed brow all the time. It's just a press release. It's just a URL. It's just all these people blogging about different lives with the same disease.

There are moments I forget I'm living with it, too.

It comes up between my husband and I over dinner. "What about clinical trials?" "What about generic insulin?" "What about that guy with the thing in that country who cured the mouse?" "What about helping people understand the differences between type 1 and type 2?" "What about medical insurance?" "We should think about a [insert project here] or maybe contacting some people for a [insert another idea here]."

And he's so excited about the possibilities for making a difference. His eyes are shining in that way that reflects true hope and effortless love, in that way unfamiliar with what twenty-two years feels like, because he has barely known three. He wants to make a difference. And I do, too. But tonight, I just wanted to eat dinner.

He stops.

"I'm sort of preaching to the choir, aren't I?"

I nod and smile.

"I'm with you, Chris. I'm just sort of tired of singing."

My face feels hot. My eyes tear up. I'm not done fighting and not done advocating and not done trying to make a difference, but I'm feeling so tired at this moment, and so uninspired. So scared of how a life with diabetes might end. Will there be complications? My eyes, my kidneys, my teeth, my skin, my fingers and toes? Will I be frail before my time? What happens when I’m no longer “young” and “healthy” and instead I look as sick as I sometimes feel?

"I'm with you, for all of this. Forever, you know."

His words reach right into my heart, folding close around the raw parts of me that don't ever sleep. I crumble in, held close against the man who will take care of me now, while I'm healthy, and who will care for me should body start to fail. It feels intense and overwhelming. And I cry, surprising myself with ragged breaths and burning tears.

I forget I sometimes feel this way, all lost and tumble-dried.

I have a good cry. He holds me and I feel better. I'm grateful for my support system, both in my home, in the folds of my family, and in the wilds of the internet. Love and support makes every shot less painful, every number less judgmental, every hurdle more surmountable. Regardless of how it ends, it’s still my life. And it’s worth fighting every day for.

I suddenly feel inspired again.

Ben's response to this:
I read that diabetes journal/poem/story and it was sad. I am not a big fan of stuff like that and I know it is the reality for Kenna, but at the same time, I think it is more important to dwell on the positives in her life, like her smile, her energy, her intelligence, her sense of humor, her caring nature, her as a big sister, and I could go on and on. Kenna has diabetes, but her diabetes IS NOT HER LIFE! She'll get to do all the fun activities and normal things that any girl her age gets to do, no matter what the age and what the activity! I am not trying to belittle the disease by any means, but it will make her tough and strong and patient and humble and so many wonderful things that we must not lose sight of. Its our job to be positive and optimistic and supportive for her because if she sees the pain it brings us, it will be so much easier for her to complain and give up, so we can't let that happen! We are her strength just like she is ours somedays! God didn't give this to the weak-minded or weak-at-heart, he gave it to us!

Love you babe:)