Featured Blogger of the Week: Nov. 8-12, Post #1

Featured Blogger of the Week: Nov. 8-12
Moira McCarthy, Parent of a child with type 1 diabetes

Post #1

On August 25^th I did the strangest thing I’ve done since diabetes entered our lives 13 years ago: I dropped it off at a door and drove away.

Sure, I made sure it was comfortable first. My daughter was starting her college life at George Mason University and I made durn sure she had everything she and diabetes needed. Cute comforter: check. Desk lamp: check. Awesome posters and decorations: check. Enough insulin to treat every single diabetes patient within a hundred mile radius: check. The only think I could not leave there was me. And as my husband and I took on the 11-hour drive home (thank you New Jersey Turnpike) I had plenty of time to ponder that.

For almost exactly 13 year’s I’d been the warrior diabetes mom. When she was little, my job was to truly be her pancreas. I counted every carb, noted every moment of activity, weighed out foods and measured impossibly small amounts of insulin into a syringe until she switched to pumping. Okay, so I didn’t give a lot of shots. (She likes to remind me of the very first one I gave her in the hospital. I pretty much wound up and smacked her with it. “Good job!” the training nurse cooed, “but next time, gentle.” My girl never let me near her with a needle again). But other than that, I owned her diabetes. And somehow, it made me feel empowered at times. I could be her protector! (And anyone who knows me and how stingy I am with exclamation point use knows I absolutely shouted that decree).

And then when she moved into the tween years, I became the worrier and nagger. If I had a dollar for every time I’ve said ‘Did you check,” “Did you bolus” “Are you high? And “Are you low?” I could fund the entire NIH Type 1 research program. But I’m here mom, so I did it. Diabetes seeped into every moment of my life. I became an uber volunteer, raising funds, running programs, chairing national government movements, doing national media appearances, waging my war any way I could. And somehow, that made me feel empowered even though I could feel my control slipping. She could try to rebel but I, diabetes warrior, would fight even harder.

Then she became a teen. A very busy, independent (and sometimes stubborn) teen. But even as she zipped off to sports and student council and dates and parties, her diabetes was right under my nose. It took up two huge drawers in our newly remodeled kitchen. It turned my daughter into a kind of Linda Blair at times (always lashing out at the mother, alas). I begged it to cooperate with her more. I begged her to lasso it in. It tore me to almost to pieces some days; left me speechless on others. I volunteered more; studied treatments and possible cures more and worried 29 hours a day about it (yes, it did feel like more than 24). I was starting to feel like William Wallace toward the end of the war, but gosh darn it, I was still battling the bad guy. This was my purpose.

And then she became a college girl. She knew a lot time ago she wanted to go to Washington DC, and I knew a long time ago I was going to have to let her. I stressed and panicked and planned and feared. I tried to come up with ideas (would she bond with one of my other diabetes warrior moms close to her college? Could they nag and beg and coerce her to wrangle in the diabetes?) I battled with her endo (who felt I should not let her go so far away). I literally had nightmares about how it would go (the kind that make you sit straight up, heart pounding at 3 a.m.) But deep down I knew something: I had to – for better or for worse – let her live her life.

It was really not that much different than my older daughter (who does not have diabetes). She was so shy, when we dropped her off at her college dorm five years ago I was worried sick. And she didn’t do well at first. (now of course shyness does not kill you in your sleep after a frat party . . . but still). Still – It was a challenge settling her into her college life, and in the end she thrived. But with my daughter and diabetes, I wondered how I would manage to do all the worrying and begging and pleading and nagging from a great distance?

Then as we drove away from that beautiful campus I realized how: I wouldn’t. For the first time in the 13 years since diabetes entered our lives I realized a great truth: It is my daughter’s diabetes and hers alone.

I feel guilty about this now – the break I have from the constant, well I guess it’s okay to call it despair even though we diabetes parents put a good face on it, right? I don’t really know first hand any more if my daughter is doing the right thing. And . . . as terrible as this sounds: It’s a wee bit freeing. I feel so guilty about that. Because I know it still grips my daughter’s every moment. I know she has older more experienced Type 1 friends teaching her the tricks of drinking (wouldn’t it be nice to just worry about what flavor you like and not the way different kinds screw up your blood sugars?) I know she is struggling with how to eat dorm food and not gain weight and still try to have some kind of decent a1c. I know she still hates everything about living her life with diabetes. I know the first weeks she kind of threw it all up in the air (thank God that ended well). But I only know this when she shares it with me. And even then, I can hang up the phone, go on with my day and not lurk around the corner to spy on her meter results.

I wanted to take it away from both of us by now. I swore I would not give up until she is cured and I will not. I wanted to shoulder every worry, every sadness, every moment of frustration for her until a cure was found. But the reality is, I cannot do that. I’ll be there for her when she calls and when she needs me. I still volunteer, I still raise money, I still work for awareness. But diabetes has given me a time out.

When will my daughter get hers?