THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Sunday, December 4, 2011

The (real) Big Picture.

Three weeks ago, I was a mess.

A complete, utter, ridiculous HOT MESS.

I felt as if high blood sugars were pelting my daughter from every angle.  I had visions of me pushing her into a corner while I stood out front, wearing a painted brave face, battling an endless array of 400's with a mighty sword.  Every time another 400 flashed across the meter, I had to fight the urge to jump on top of her in an effort to act as a coat of armor, desperately trying to protect her kidneys -- her eyesight -- her nerves -- her EVERYTHING from flying debris that could not be seen with the naked eye.

Nights were restless at best.  I had a hard time engaging in life.  I started to forget important things, and couldn't seem to finish anything I started.  I had Animas posts started and vlogs to create, but I couldn't focus.  I felt anxious and distracted, and worked hard to keep my emotions hidden so as not to burden anyone around me.  I snapped easily, barked louder, and stomped my feet over the slightest irritation.  Answering midnight calls from parents about routine prescription refills chafed my nerves.  I cried when I was alone, because I had tried everything I knew to do, and didn't know what to try next.  I often stared at whatever was on the TV to disguise the fact that my brain was trying piece together a puzzle with a million missing pieces.

We went to the endo -- they suggested a few pump setting changes.  Nothing worked.

400.
400.
400.

Meanwhile, all three of my girls cycled through illnesses.  Strep, fevers, coughs, snotty noses, vomiting, missed school, sleepless nights...drugs, DRUGS, and MORE DRUGS!!!!  I was scrubbing bathrooms, washing sheets, and changing toothbrushes constantly.

400
Snot
400
Cough
400
Vomit

By Thanksgiving, all I wanted to do was pull the blankets up over my head, and sleep until the nightmare ended.

So why am I telling you this?

Because if you didn't know better, you might peruse the ol' bloggy here and assume I had my act together.

Images of happy children, a family that goes to church every weekend, a supportive hubby, gluten-free cookies, Christmas tree lights, diabetes camp, the good old days.......HA!  I would have had you shammed.

When you're surfing around the DOC -- reading blogs, checking Facebook, lurking in chat forums -- you may come across pictures of beautiful CGM readings, amazing A1c reports, and perfect post parandial blood sugars.  It's easy to compare your situation to the ones you read about, and get caught up in the notion that you aren't measuring up as a pancreas for your child.

But don't be fooled.  Each of those posts are momentary victories.  They don't always paint the big picture.

I mean, I'd love to post Dex pics like this every day...


But the truth is that we often have pictures that look more like this...


I guess what I'm trying to say is that your child's A1c might be 6, 11, or anything in between. Your child's variables are different than my kid's.  Your family routines differ than ours.  Your life isn't the same as anyone else's in the DOC.

We're each unique. 

As parents of T1 kids, we each have the responsibility of balancing the demands of diabetes with the task of raising up our child amid the individualized journeys we're travelling.

You know when there are areas that need improvement. 

You know when you're on your A-Game.

Keep plugging along.  

Keep reading, and learning, and asking questions.  Keep testing, and counting, and bolusing.


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18 comments:

  1. Love this post!!! I think especially for newly dxed families this is so helpful and supportive.

    Love you lady!

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  2. I've told my Ping Group that I've learned more from the d-moms & dads! I love that you let us know about the frustrations along with the "wins."
    Hope it's getting better.

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  3. love the honest heartfelt post Wendy. You are an amazing D-Momma and I hope the 400's and illnesses have left your house finally!

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  4. Trying to keep swimming over here! These words ring so true. Hope everyone is feeling better.xoxo

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  5. Thanks for posting this...It is so true..Glad you share the good and not so good! It shows people the "REAL" about living with diabetes-the ups and downs... So glad to have the DOC..people who know about and live with type 1. Hope you all are feeling better and get some much needed rest :)

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  6. BEST POST EVER! Thank you for sharing. The reality is never as pretty as the pictures. I'm dreading our Endo visit in January, because I know things aren't going to be "pretty."

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  7. This makes me cry, because this is exactly what I'm going through. My ten year old T1 has been sick for the last couple days...bgs 250, 300s, 400s, ketones, extreme sore throat, high fever, sleeping all day. She has other medical problems on top of D, so I'm trying so hard to take care of her. I feel so completely helpless. I want to keep my other kids out of the way, but not feel ignored. I'm trying to protect her and well...basically everything you said there! Hope your girls are recovered by now and thank you so much for the comfort that I'm not alone.
    Libby,
    Mom to Ella-10, dx T1 @ 30 months.

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  8. Oh those days of 400's... :( I'm sorry you guys are struggling so much with them. I've had days like that (when I was younger and also some as I've been older). It will get better and you are doing an awesome job.

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  9. Amen! When you have a child with diabetes, real isn't pretty. It is what it is, and there is no use pretending the highs and lows away.

    Just keep swimming. I wholeheartedly agree!

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  10. I sooooo understand :( I went through this same thing not long ago. I was seeing all those A1c's in the 6-7 range and we were pelted with a 9.5...only 1 full point from what she was when she was diagnosed. What was I doing wrong? How could we make it better? She had some lows...she had some highs....and she had some good days...but was there anything I could do to fix it? Nope! Nothing! I felt defeated but our Endo reassured me that we were doing all we could. It's something called growing...hormones...and puberty and there was NOT. ONE. SINGLE. THING. I. COULD. DO! :( So what do we do? We take each day as it comes. We handle each day as a new one. We focus on those numbers and not the numbers from yesterday, the day before or tomorrow. It's rough! Some days I wanna scream. Some days are full of smiles despite those 300-400 sugars. And then some days are spent screaming inside at the top of my lungs. What I choose to do with those days is up to me. I choose to smile and let Kacey know...IT'S OK! Diabetes is not her fault. It's not my fault. It's life and every single person struggles with something in their life and this is what we have to deal with.

    Wendy...you're an AMAZING D-Momma and I'm so blessed to call you my friend! You have my number...text me to vent when you have those days. Love ya bunches!!!

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  11. Thank you for being so honest! I feels good to know that I am not the only one that can have totally crazy days!

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  12. What a moving post - you go girl (or, go mom)!

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  13. Thank you for sharing this Wendy, it is so true that all of our kiddos d is unique...even day to day for them at times!

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  14. Omg!

    Thank you for writing this, Nothing annoys me more than when people post their cgm results and all you see is -------- and mine is WWWWWWWMMMWWW. And its always after a super stressful work/school week. It really annoys me. I've had days such as your daughter's. Especially when I was younger. Also, as an adult, I went to my endo last week and my A1C was .3 points (okay, not a whole lot but you know) higher than it was 3-4 months ago when I first started using the dex! Ugh! Every single day, week, month is different. You are going to have some super bad A1Cs but its not the end of the world! I've had some super bad A1Cs as a kid (just due to growing and hormones and for girls, its even harder) but after 20 years of living with this thing, I'm still complications free. Illness makes it ten times worse and all you can do is do what you've been doing. I promise you, the victories outweigh everything :)

    Also, tell Addy Maressa, her DC said, "Hey!"

    -Maressa :)

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  15. LOL - great, great post, especially at this time of year! We were dealing with the same here at home, while sugarplum Christmas pix were floating around in the media ether. Brought out my inner Grinch - and that's with just one kiddo. Hope everyone gets better!

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  16. Amen, sister! It drives J crazy to see all this perfect Dex pics. Because you really only take pics of the good ones. The one that look like mountains- well... That's not really Christmas Card material is it?!? It's so important for us to realize that what we see online is only a snippet. It's never the whole picture. Great post!!

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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.