THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Tuesday, August 14, 2012

She Didn't See Me


He takes care of our school.

You'll often find him changing a light bulb or folding up the cafeteria tables.  He helps to unload trucks of school supplies, and makes sure the classrooms are cool when it's 115 degrees outside.

When my car battery died in the drop-off lane, he rescued me with a smile, and a set of jumper cables.

And...when the school nurse was called to an emergency on the PE field right smack dab in the middle of dealing with a rough low blood sugar my daughter was experiencing, he stepped in.

"I'll stay with her.  I'll stay here, and make sure she eats the rest of her lunch.  We'll check her finger again in a few minutes.  I know what to do."

It turns out his daughter also has Type 1 Diabetes.

The nurse emailed me to tell me what had happened, and how helpful it was that he was in right place at the right time.  The first chance I had to thank him personally, I took it.  Then I asked about his daughter.

"She was diagnosed when she was 9.  She's 33 now.  We tried to do everything right.  We checked her numbers, and watched her diet, and kept up with technology and research as best as we could.  We tried to keep as much control as possible, but she went wild there for a number of years, and nothing we tried was enough.  She seemed to straighten out a bit after she had her baby...but...by then it was too late.  She had already lost her eyesight.  She lives with us now.  My wife quit her job to help take care of her and our grandson.  I was retired, but took this job so we can make sure they have everything they need."

His words stung...and served as a reminder that my daughter isn't guaranteed a life without diabetes complications, regardless of how hard I try to prevent them in the short amount of time I have to make a long-term difference.

As a parent, I've been criticized...for checking blood sugars overnight (we usually check between 12am-1am and then decide how to proceed until morning); for working to implement a 504 Plan in an environment where class sizes are at an all-time high, funding has been slashed, many districts don't employ school nurses, and educators are leaving the profession in search of higher paying careers; and for proceeding with great caution when allowing freedom to do things on her own (like sleepovers, for example).

I've been told I need to "let go", "get a grip", and "calm down".  I've read comments on Facebook, Twitter, blogs, and news articles criticizing today's T1 parents, calling us "overbearing", "hovering", and "whining".  (Interestingly, many of these opinions come from people who haven't actually managed a young child with an insulin pump themselves.)

Meanwhile, T1D is on the rise globally, at a rate of 3-5% per year...and the fastest growing segment of that population are children under the age of 5 years old.  If we do not fight for the best control possible using the best tools available, around the clock,  every.  single.  day...these children will enter into young adulthood facing a high risk of complications at a time in their lives when they will struggle to access health insurance, find jobs, and secure a future for themselves.

As a parent, when you do try to "lighten up" a little...A1c's start rising -- the next thing you know, someone begins reminding you of the Diabetes Control and Complications Trial.

Or you meet someone with a T1 daughter who is blind at the age of 33.

At 22 years of age, my daughter will have been living with diabetes for TWENTY years -- that's plenty of time for a diabetes complication to develop.

{Rant over.}

Anyway, he told me last year that his grandson would be starting school soon.

This morning, we were in a rush -- I'm recovering from a long evening of travel delays after making an urgent, unplanned trip to visit my grandmother over the weekend.  The girls are recovering from 4 days without their mama :)  When the two clashed this morning, it led to a mad rush getting out the door on time.

So there I was, stopped along the curb, hollering to my girls that I love them, and watching to make sure they made it inside their respective gates.

Then I saw a young woman with her arm linked inside her mother's.  I could tell they were mother and daughter by the resemblance.  She walked when her mother walked. She stopped when her mother stopped.  Her mother made sure his backpack was zipped, and wiped a smudge from his cheek.  Her mother watched him run off to the playground.  Then her mother gently brushed the hair out of her face, and held her arm tighter as they turned around to step off the curb.

Yes.

I saw her today.

But she didn't see me.


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22 comments:

  1. oohhhh....I have no words, yet Im feeling it today...this monster that is here with us..

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  2. Tears. Love <3 You're a good mom, and a good grandaughter, and a good advocate.

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  3. sigh...

    three sisters of a very good friend of mine grew up with T1. Two are thriving in their 40's with only a couple relatively minor complications each. The third, well, she had "wild years", struggling horribly with the emotional side of things, and had nearly every complication in the book before she passed a couple years ago. Just a reminder that helping to keep the emotional health in check goes a long way, too.

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  4. I'm reading this, and at the "tried to keep as much control as possible" part, I'm thinking: so did my parents. After "she went wild there for a number of years", I'm thinking: so did I. At "after she had her baby" I'm thinking: I have two kids (no, I didn't give birth)... but I had a sense that the story wasn't going well.

    This really scared the bejeezus out of me.

    I'm not writing this because I want to scare you; in fact, I contemplated not replying at all; but because it's an important and powerful story to read and think about. I think it's so hard for a parent to try and to push their kids to take care of their diabetes, but not to push so hard that they start to rebel. I don't know if that's the case with this gentleman's daughter, but how does a parent be protective while not being overbearing?

    I don't know the answer to that, but I know that a good parent will always do what they believe is the absolute best thing to do. From what I've seen you write (and your writing style is absolutely beautiful, BTW), I believe you are instilling the right values in your daughter, both in the moral type and in the "take-care-of-yourself" type. She should be well-prepared to pick up where you left off when she's old enough to leave the house and be on her own.

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    1. Thanks for your kind words, Scott. It's a fine line between looking out for your kid's best interests and wanting to follow them everywhere with a food scale and a juice box. I think we know as parents that we'll have to loosen the reigns (or at least I do), but when and how is seems very individualized.

      The overwhelming majority of people with T1 that I've met and interact with are healthy, happy, and complication-free adults. They're well adjusted and living normal lives....these are the people I try to learn from, in hopes that I'll find the right balance.


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  5. The thing though (and this is what drives me nuts about diabetes) is that there are plenty of people who have their "wild years" and do just fine. And there are people who have had diabetes under relatively good control for just a short number of years, and they already have complications.

    While the risk is certainly diminished, diabetes doesn't give two hoots how well you did. I say this because I don't want people who have diabetes complications to be given those *looks* when people find out they have complications.

    Now, I have my own thoughts and feelings about parents of CWDs, but I have a unique perspective having been a CWD. I don't really remember what my parents did with my diabetes, but I lived, so it must have been OK. I do think our diabetes technology makes it easier for parents to "hover" so to speak, and so perhaps that's where it came from. Or maybe it's just because parents are talking to each other more, and more often. My parents knew a handful of other parents of CWDs, but it wasn't hardly anything like the DOC. I would never tell anyone how to parent their child, but I do know what my childhood was like, and it was a good, healthy one.

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    1. You're right, Allison...there's no way to predict who is going to end up with the short end of the test strip! Diabetes may not care how "well" I'm doing, but Diabetes isn't raising her. I am. And I'm committed to doing everything possible in an attempt to lay a foundation of health and longevity for her future.

      In the big picture, I only have a short amount of time to do everything possible in order to make a lasting impact...will my efforts pay off? Can I "buy" her some time or perhaps even keep her healthy enough to balance the "wild days" that are yet to come?

      Only time will tell.

      You're right...you lived, so I guess they did something right! You don't have any complications, so I guess something is working.

      But not everyone can say that. Not everyone can say they made it through their childhood alive -- or that they came out unscathed without complications. That doesn't mean their parents didn't work just as hard as I am, because like you said...Diabetes doesn't give 2 hoots! It does mean, however, that nothing is guaranteed...and, until someone can guarantee my daughter a future without complications...well, then I guess I'll still be "hovering", because I want to give her a fighting chance.

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  6. Oh, Wendy! I have no words as tears stream down my face.

    We do what we can, what we must and then trust our kids to do the same.

    *sigh* back to school prep for Bean so she's safe while out of my care!

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  7. I am absolutely sobbing. I'm a 18 y/o T1...diagnosed at 9, and by the age of 12 struggling with the emotional aspect and in my "wild years". I have a couple complications already. I'm doing much better, in counseling and under the strict eyes of my parents and doctors, but...this terrifies me...Just one more reason to get my act toether!
    Oh and your kids are beautiful :)

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    1. My daughter is 13 and was dx'ed a year ago. She went through the "I don't care" stage, but luckily did what she was supposed to most of the time. This summer we went to CWD "Friends for Life" conference in Orlando. It was amazing! I saw changes in her while we were still there. Peer influence is amazing! They also have scholorships for those wanting to attend. It was well worth attending.
      Kristi

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  8. Thank you.

    I'm am without adequate wwords.it has been a rough week for Justice and well all of us because of that.

    Tired of hearing relax, let go, it'll be OK.

    It isn't aways and that's a harsh reality we must face.

    Love you friend.

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  9. This beautifully written, filled with love post tugged at my heart strings.

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  10. :( tears/trembles! Sobering... We just have to keep doing the best we can.

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  11. It's also been shown that some people are just more predisposed to complications, for whatever reason. When I was a kid there were never middle of the night checks. But that doesn't mean that I wouldn't do them if I had a child with d. Heck, there are times when I do them on myself now.
    Something my endo told my mom when I was diagnosed, after my mom had a break down and say in his office crying saying "I can't do this." : he told her "Do the best you can. It's better than if you did nothing." And I agree. He also told my mom to let me have as much control (supervised, of course) as possible because it was MY disease, not my mom's.
    Both were incredible words of wisdom. It's a balance, but it's possible. And you are doing what you can, which is the best thing.

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  12. I'm in tears. Not only for that young woman, but for fear for our own children. Especially with "Bee's" last awful A1C and the awful A1C's before that one. The puberty, the growing and the rebellion. The difficulty of her being just plain old tired of it all and, in her words, "taking a break to be normal for a while" which resulted in not testing and not bolusing without me knowing. And she's only 12. I'm afraid it could get worse.

    We do all we can, but sometimes that's just not enough. :(

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  13. tears but beautiful. That you for the post!

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  14. Thanks for your story and for everyone else's posts. It helps new T1 parents understand what we are up against.
    Kristi

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  15. Every night when I get up to check my child I hold my breath just waiting to make sure she is breathing still. Every morning when I wake up and rush to check her I hold my breath.
    If someone wants to say that I am hovering over my child that's just fine. But until they actually walk a mile in my shoes they have no darn clue what I go through every day. I love each of my children and pray that they all get to grow up and live long and happy lives. Unfortunately, if I do not teach her how to handle everything. And I don't try as much as possible to show her that not controlling her diabetes can cause problems, she may end up as one of the horror stories of T1

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  16. One day at a time. You can do this, you are doing this. The world of diabetes (both technology and support) has changed so much - even since I was diagnosed. It could be a completely different picture for Sugar by the time she is an adult.

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.