Just like me.

One of the words tossed around in the aftermath of  my little one’s diagnosis was “normal.” We talked about our “new normal” and how to “normalize” this for her. We worried about how to make her school days pass as “normally as possible” and on and on and on. It seemed that in the face of this dramatic change to her life, and our life as a family, the best thing to do was educate ourselves and move on-like normal.

Had you asked me a week ago if we were successful at doing that I would have probably told you that, yes, in fact, she was adjusting brilliantly and life continues on, smoothly if not differently. I would have told about our  new normal and all the things that entails. I would have said all is as well as it can be and that we were holding up quite nicely thank-you-very-much.

This week I discovered that it isn’t as peaches and cream as I ‘d wanted to believe.

Upon arriving at Camp Kudzu, (www.campkudzu.com) camp  for children with diabetes, we participated in all the usual rituals of leaving one’s child at camp. Lugging the trunk, the pillow, the sleeping bag, the stuffed animals, and everything else out of the car and down and around and over the river and through the woods. We stood in all the right lines and answered all the right questions, and marveled that unlike her “old ” camp, this one had AIR CONDITIONING.   Just after completing the mandatory lice check and before the head shot (of said child with now messed hair) my daughter looked at me and said “Mommy, all these kids look like normal kids.” To which I replied, “they are normal honey, just like you.” She gave me a look that pierced my heart into a million pieces and then said “You know what I mean mommy.” And suddenly I did.

I looked around and thought to myself , hey, all these parents, they look like normal parents.  That’s when I realized just how incredibly lonely this journey has been for me, and most certainly for my daughter. She’s not “normal”, no matter what we say. She has a chronic, life-threatening illness that, barring a cure, will be a part of her life forever. She is the only one at school, and in fact, the only one in her world, that has diabetes. She is the only one that wears a medic alert necklace all the time, even when it bothers her on the playground. She is the only one that has to prick herself before lunch, count the carbs that go in her mouth, have her mother come to school to  give her meds, and the only that doesn’t go to sleep-overs with her friends . She is the only one that doesn’t eat the donuts on birthday day and the only one that has to run to catch up because testing her blood glucose slowed her down on the way to recess. She is not normal in her world, she is all alone, the odd man out, regardless of everything that we do.

And so am I. I have the most amazing friends and family, people who listen and care and would do anything I asked of them. They try to understand and they listen, but they don’t know. I know no one that walks around with this in their head twenty-four seven. All parents worry, all parents fear for their children and protect them with all their might. But do all parents feel completely helpless all the time knowing that even giving it their very best  it isn’t enough to keep their child alive. Myvery best won’t do. I am at the mercy of the insulin pen.

I have gone about my days being the best version of me I know how, but until I stood in that camp cafeteria I never realized that this bothers me way down deep in my core-this solo ride. No colleague, no friend, no lover really knows.

 But everyone in that room knew. And even if only for a moment, that felt amazing.

If they can do it, I can do it. If  I  can do it, they can do it. We may not be normal in our world, but we are normal in theirs and they in ours.

My little one came home and said the best part of camp was that  nobody complained if she needed to stop to test because she felt low. No one noticed she need a pull-up on a night when she was high. No one asked “why do you do that?” when she tested her blood.

 ”Mommy, ” she said, “it was totally awesome not being the only one.”

What more could I ask for than that?  At least for one short week in her life and mine.

Normal.

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