#WEGO @HAWCM What I Learned the Hard Way

April 17, 2012By 3 Comments

 

Oh, to be all dewy-eyed and driving toward the cure. But then again, knowledge is power.

In my 15 years of caring for, battling on behalf of and advocating endlessly for my child with diabetes, I’ve learned a lot, much of it “the hard way.” That’s not to say I’m bitter because I’m not. If anything, while I’ve had patches of Wilson, Traction, Franklin, I’ve always come out the better for them. Still, having started as that innocent who just thought all would fall in line in my quest for a better life for my child, it’s been a, well, interesting road.

Some things I’ve learned the hard way:

 *Not everyone is going to care. And there’s nothing, really that I can do about that. I’m a born sympathetic, so for me, the notion of someone thinking “it’s not that big of a deal,” or “isn’t she over that yet,” about my child and her incurable disease (Type 1 diabetes) was almost ungraspable. And in the early years, I took every “Whatever” as a personal insult. I mean, how can a person not care about a child plunged into a life of constant medical intervention; a life of forever uncertainty? But there I go again: trying to convince the inconvincible. Here’s what I learned: It’s okay. Because those who do care and who do rally more than make up for those who just don’t get it. I now try to think “Well, I guess they are lucky to not understand. And I’m happy for them.” (And then I kick a rock or something.

 *There’s politics in everything. Man, I’ve seen pure evil spew from the mouths of power-hungry leaders (I’m talking, of course, of what I witnessed around our small-town PTO table). But I honestly believed there could never be politics, games and infighting among a population of folks all trying to cure a disease, most of them on behalf of a loved one. This was probably the hardest lesson I learned. Because in my decades of fundraising, volunteering and yes, leading toward a cure, I’ve seen some pretty ugly stuff. Back-stabbing. Volunteer-on-volunteer warfare. Insecure folks lashing out against others who might not be doing things exactly the way that person likes it, but is trying, gosh darn it. I’ll be honest, for a short while, this broke my heart. (Maybe more than my heart has ever been broken in my life, other than Lauren’s diagnosis). But in time, it all settled down for me. I now look at it this way: It’s a rough, scary, nasty, unsure world we live in here with Type 1 diabetes. Sometimes we feel powerless. Powerless against raging numbers. Powerless against burn out. Powerless against uncertainty. And just maybe, sometimes, the only way we have to work out our anger is to focus it on a place it might not belong. So in the past year, I’ve come to more of a point of understanding (well….for most of those folks. Haha I’m not that nice). But I will say this: I truly believe that in the world of advocating for a cure for any disease, we all need to treat one another with total honesty and respect. There are times when we might not agree, but we can do so with total support and love. Now that said, I’ve been lucky enough to witness absolute beauty, support and shared passion too. It’s actually one of the things about being in this world I hold closest to my heart. And if a few WTF moments have to come into play in exchange for that amazing gift, I’m all in. And when I think of it, my list of amazing folks I’ve met is nearly endless. The meanies? Count them on one hand. So there you go.

Me with my former JDRF Grass Roots Leadership Team -- some of the best people I've ever met on this planet!

 *Not everyone is in this for the right reason. This one knocked me off my rocker, to be sure. For years, I just assumed everyone doing anything for the diabetes world was doing it for the right reasons. And although I’m a huge JDRF person, I know the folks at ADA and DRI will back me up when I say I’m all for everyone. Except those strange little factions that form because they claim nothing is being done. Now, I totally understand being frustrated (see above), but in my humble opinion, there are plenty of good, solid ships on this sea for you to jump aboard and offer to crew on. Why would someone go out and raise money on their own to recreate the wheel? It’s a head-scratcher for me, to be sure. I respect trail-blazers. Heck, a adore them. But when I hear of someone asking for donations to themselves to build what already exists, and when I see them claiming the many incredible organizations are not doing right, I get a little angry. I am not talking about watchdog groups or groups formed to focus on a certain kind of research – I say more power to them. But I do hope that folks who want to sign on to any program or organization look closely at each one they consider and make sure the mission is true.

 *The cure did not come in 10 years. Used to be, folks would put a deadline on things. If you ask me, this just sets us up for disappointment. And I learned that the hard way. But you know what? If we stop focusing on just the finish line and focus on what’s happening along the way, we can get satisfaction too. Since my daughter’s diagnosis, meters are smaller and faster. Insulin is way, way better. CGM’s are available. Complications can be offset and even reversed. True, we are not at the finish line, but I’ve learned to celebrate each hurdle jumped as we charge toward it. I’m proud of the progress we’ve all helped bring along together.

*That which does not kill me makes me stronger: No, really: it’s not trite. This battle has helped me learn compassion in a whole new way. It’s trained me in the intricacies of making things happen on Capitol Hill. It’s helped me hone my parenting skills for both my kids, not just my child with diabetes. It’s allowed me to learn to help others in so many ways. Talk about learning the hard way — my daughter’s health was the cost and I’d turn back time in an instant and not know all this if I could. But when you really study it, it’s a gift.

 *In the end, I cannot protect my daughter 24/7. Nor is it right to. This is a hard, hard lesson for a parent. We raise them under constant watch. We set up situations so they’ll always be safe. But at the end of the day, (at least in my child’s case), the world beckoned. And while I’d have loved to just keep her here forever (she’s a pretty fun young woman anyway,) I had to let go and let life take her on her way. Do I know what her blood sugar is at 4 a.m.? Nope. Nor do I know what it is at noontime. But I know this: she’s radiant. She’s thriving. She loves her life. In the end, I have to let go and let life take its course. I can only hope that is a lesson without too many (or any) hard lessons.

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Comments (3)

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  1. Katie says:

    Good points, all.

    I can understand “overload” when I encounter it when I try to fund-raise. Just within my own immediate family, we have at least THREE “searching for a cure” conditions… and if I include extended family and friends, the number is huge.

    I quit asking and just give, usually. I let people choose which causes they are moved to back. I mean, how can I ask a person whose child has Cystic Fibrosis, or Cerebral Palsy, or Epilepsy, or cancer, to care more about MY child with diabetes? I can’t. And people have limited funds, particularly when they are dealing with expensive medical conditions. What seems like apathy may just be burn-out.

    I post my links, and hope for the best.

    And, I so agree about re-inventing the wheel. But I am trying to learn to shut my mouth. (oops! almost kept typing there)

    We try to be happy with the improvements in care, while working hard to support progress towards a cure, or a prevention, or, God willing, BOTH.

    And, the thing I try most to remember is that, diabetes or not, life is fragile, and full of unanticipated tragedy along with unexpected blessings. For everyone. Not just us.

    Good blog today.

  2. I would like to meet with you if you are willing.

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