‘It’s always there.” (The one where I answer my own question of “Why keep advocating?”

Can't see diabetes there? It's there -- shifting and taking up her thoughts even when she's smiling and embracing life (and donating to JDRF!)
Can’t see diabetes there? It’s there — shifting and taking up her thoughts even when she’s smiling and embracing life (and donating to JDRF!)

It’s a worthy question; one that deserves a thoughtful response. If I spend so much of my time speaking and writing about how someone can thrive and embrace life despite diabetes, why do I spend so much time raising funds and advocating for better treatments and a cure?

Because really, I say it a lot: There is NOTHING my child will not be able to achieve in life even with diabetes on board. I never let it stop her growing up, and she’s not letting it stop her now. I asked parents and people with T1D to “Join the culture of yes” in my keynote talk at Friends for Life this past July, and I do the same every day.

I also often point out that experts believe this generation of kids growing up with T1D will be the first one to grow up pretty much free of serious complications. Kidneys can be protected with medications (as my daughter’s were in her rough years), eyes can be treated with surgeries and medications that will all but end blindness due to diabetes in first world countries. It’s a bright future; so much brighter than it was when my daughter was diagnosed nearly 16 years ago. This is very much because of fundraising and advocacy. This is absolutely because of all my friends who donate so generously to research.

So, someone asked me: isn’t that enough?

No, not nearly. And here’s why:

 Diabetes never goes away.

 Let me explain. Yesterday was endo day for my daughter. As is our tradition (even though she’s an adult now), I drove her into Boston and we spent a nice day together. Because her appointment was in the afternoon, we spend the morning walking Newbury Street, shopping and grabbing a salad at a nice outdoor café. After lunch, we were walking along and she said, “Oh, I have to stop and calibrate (her Continuous Glucose Monitor.]). She pulled out her meter, checked, showed me how to enter the number on the CGM (I never had! She’s an adult, remember?) Then she went to check a second time as is required, and said “Yeah, that said 113 but I’m more like 78.”

“How do you know that?” I asked her.

“Because I can feel it mom. I can always feel my blood sugars. Sometimes I’m right, sometimes I’m wrong …. But I always feel it shifting.”

She always feels it shifting. This hit me like a ton of bricks. While I go along all lalalalalaal shopping and laughing and gabbing about the “Culture of yes,” my daughter feels – 100 percent of the time on 100 percent of the days – the constant impact of T1D.

In other words, it never, ever, ever gives her a moment of freedom in a physical or psychological way. I had always realized she had to do things like carry her meter and glucose, make sure she’s okay, plan ahead for ANYTHING, remember to bolus, but I just guess I had not thought about that shift constantly going on inside her body — that she’s aware of it. That she has learned to live despite it is remarkable. That we still don’t have a way to take that burden away is motivating. I must help my child. I must help the world.

And trust me, fluctuating blood sugar is not a pleasant thing to feel. Let’s say it wasn’t that bad. Imagine feeling – for ever and ever and ever – something like an itch on your back. Or the hiccups. Or a migraine. Or cramps in your legs. Always. Forever. It might just drive you mad. But blood sugar shifts feel like shaking to sickness to sweaty to sick again to shaking. Over and over and over each and every day. Could you handle it? I don’t think I could.

And yet, that’s just what folks with T1D do. I don’t know why I had not thought of it. I’ve thought of the long term; how she’s always need to worry about insurance and co pays and finding good medical care and making sure she carries glucose and insulin and being able to balance it all with life. But I never until yesterday thought, “it impacts her physically every single moment of every single day.”

That’s why I kind of absolutely love JDRF”s new “Typeone until TypeNone” campaign. I’m all for that.

Look at where we’ve come since T1D entered our family’s lives. No longer do we need to stick to a crazy meal plan and exact schedule. No longer to we have to feed peaks of crude insulin (now we can use a semi-less crude insulin to eat when we want. Not good … but better). We can now see what blood sugars are nearly 24/7 without having to prick fingers a million times a day (still have to prick them a lot but the information we can get is amazing). We have fast meters and cool pumps and better tests for how things are going.

We are moving, daily, toward “less.”

But you know what? I want “None.” I want my daughter, and my friends like Kelly and Sarah and Gina and Katie and Brian (My wicked cool new friend) and the gabillions I met via JDRF and FFL to have none. I want to walk along Newbury Street looking at Lily dresses and baubles and have my daughter only conscious of the lovely day and of what she might dream of buying.

I don’t want her to feel blood sugars elevating or dropping. I want her in the Culture of Yes without having to buck up and hang tough to join it.

Is that a good enough answer? Because it fuels me today. It fuels me tomorrow. It fuels me until we go from less to absolutely none.

I hope you agree.

7 thoughts on “‘It’s always there.” (The one where I answer my own question of “Why keep advocating?”

  1. Well I am honored to be considered your wicked cool friend. That makes me feel special. You are my awesome friend. I am not in that immediate geographical region to use that phrase. I am just south of it. I agree though with the I can feel it shifting comment though. Some days you just know. It is strange. Keep rocking.

  2. Oh, this is a good one. Made me tear up. It’s weird, that even though we constantly think of our “kids” and Type 1, and have our hopes, dreams, ideas, and wishes – still, we can forget that they constantly “feel” it.

    We’ve joined the culture of yes, and so have our loved ones with Type 1, but although they can “ignore it” (in good and bad ways) – “forget about it” is really impossible.

    Anyway, so because you said that so well, I got a little sniffly.

  3. Very good story. I cried too. I want my family and friends to read this. I tell people all the time when she is misbehaving that we give her a break because her body is going thru so much. And she feels it everyday. When she is high she can sometimes be nasty. When she is low she knows it…she shakes.

  4. Oh yes, I agree wholeheartedly. It’s so hard to say “it’s not so bad, you can do this” in one breath and then “I wish/hope you never have to do this” in the next. I think you just about summed it up perfectly.

  5. well shared Moira. I don’t know that I ever thought about how my kids – all the CWD and AWD – feel it all the time. The shifts in their bodies all the time. I know I’ve thought about how they all must feel during a ‘high’ or a ‘low’ or how the yo-yo-ing can cause great stress but the fact that they feel it all the time – well that isn’t something I had considered. It is reason enough to keep advocating – keep fighting. It is the love we have for our children and our friends.

  6. Are you sure about Brian?! I’ve got stories… 😉

    She’s right about the shifting. I didn’t realize how true it was until I had my CGM. I can’t tell you how many times I will feel a certain way (not just high or low, but moving) and look at my CGM for confirmation.

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