Life for a Child

Wednesday, May 30, 2012

There's Something You Should Know...

My mom and I were talking the other day.  As it often does, the conversation turns to something diabetes related.  

She always asks me how Sweetpea's numbers are.  What's been going on.

And so I was explaining a how her arms seems to be a "sweet spot" for good numbers but we have had some lows... like that 45 on Christmas morning... that come out of nowhere.  

She was expressing her frustration that diabetes doesn't play but the rules.  

They take care of Sweetpea every afternoon.  They know how to bolus for food and how to treat a low... or a high.  But that's it.  And Mom was saying how she realizes that they don't REALLY know how to take care of her.  They know nothing about basal rates and ISF's.  It makes her crazy that doing the same thing one day can cause a completely different result on the next.  "It just doesn't make sense!" she says.

"Mom, You've got to get over that.  Diabetes DOESN'T make sense.  Don't expect it to.... you'll just pull your hair out."
 
"It's so hard to explain to people.  People ask me all the time how Sweetpea is doing.  But they just don't really understand." she said.

Yeah.

"How is she doing?"

Seems like a simple enough question.  

But it's not. 

I never know what to say.  It's such a loaded question....

If you don't LIVE with diabetes 24/7 - you don't know.  And explaining it can be as difficult as nailing jello to a tree.  Or herding cats.  

BUT...  I have to try.  It's my JOB to try.  It's my MISSION to try.  (See also:  If I Have to Explain...)

So....

For all of those on the "outside" - there are a few things I want you to know.

I assume that you already know the basics...You know.... that T1's an autoimmune disease.  It wasn't caused by eating too much sugar.  There is no cure.  She won't grow out of it.  

But there's more...

I want you to know....

that there is no "good" or "bad" kind of diabetes

that diabetes is not a disease where you take your medicine and forget about it

that I think about diabetes all. the.  time.  I'm always thinking about what her current bg is, or what she's eating, or what she's going to eat, or wondering if she's rising or falling, or what's going to happen next.

that diabetes is unpredictable.

that diabetes is always changing.
that calculating insulin doses is extremely complicated - and it's NEVER a+b=c



that diabetes is deadly.  Not in 50 years.  Not if we don't take care of her.  It's deadly NOW.  No matter what we do or how hard we try.  

that calling the hospital does not mean that her diabetes is "bad".  Calling the hospital for help is a normal part of life for us.  The more we learn, the more capable we are to make changes on our own.  But we still call.

that when you have diabetes, there are no small illnesses.  Diabetes makes a simple cold anything but simple.



that wearing a pump does not mean that you're cured or that life is easy



that the pump site and cgm site is inserted with a NEEDLE every 3 days



that having a CGM does not mean that we don't prick her fingers anymore



that we still get up in the night.  Sometimes once.  Often more.  And I've just accepted that that is the way it is.  It is not going to change.

that EVERYTHING affects blood sugar - exercise, illness, excitement, nerves, growth, hormones....

that she really CAN eat ANYTHING she wants


that sometimes although she CAN eat it, she shouldn't until her blood sugar comes down
 
that sugar-free is not always better

that she MUST test her bg first.  Not after a few bites.  Not later.  BEFORE.  



that there is little room for error

that we go to the hospital every 3 months for a checkup

that I know how to handle my child's diabetes better than any nurse or doctor - not that I don't need help and advice... but I know her body and her disease

that being a perfect pancreas is pretty much impossible

that it hurts to be left out

that I don't want your pity.  I don't want you to feel sorry for me - or her.  

that I want you to FEEL for us... and then take that empathy and put it into action to help us find a CURE.



that people who don't care to learn about diabetes because it's "no big deal" make me so angry steam comes out of my ears

that it costs a LOT of money

that we can never leave home without our supplies - it's life and death

that nothing is as easy as before... not holidays, not school, not church, not playdates, NOTHING

that diabetes changes EVERYTHING

that you can't - for a minute - let your guard down or get "lax" in your care or attention to detail 

that things can go from fine to emergency way too quickly

that I am tired

that I often look like hell, can't think straight, sport dark circles under my eyes, don't hear what you're saying... because I live in a parallel world where diabetes hijacks my brain from time to time... and my energy.


that a cavalier attitude about her care and/or expressing to me that I'm too overprotective is not going to go over well.  When YOUR child has diabetes and YOU are the one responsible for her health and well being - then I'll listen to your opinion.  Until then - keep it to yourself.  

that my husband and I rarely have time together... alone.  Date nights are pretty much non-existent.  So, while I will genuinely happy for you that you get to go away for your anniversary or that you got to go out together for dinner and a movie - I'll also be very jealous!

that I don't mind answering your questions.... BUT -

that I really don't want to hear about your Great Aunt Sue who lost lost both of her legs and went blind

that I do NOT want to hear about cinnamon or some tree moss (see Joanne's video) that you think is going to cure her.  If it was that simple do you really think I wouldn't know?

that no, I'm really not glad she "got it so young" and that "she'll never remember life before".  No, that's sad. 

that you have no idea How Lucky You Are

that my medicine cabinet is taller than I am



that it is incredibly painful to hold your child down to give her shots or insert pump or cgm sites



that I've already cried enough tears to fill an ocean

that it does get better with time

that it will always hurt

that I will FIGHT for my child and her health

that I will never let diabetes stop her or hold her back 

that diabetes makes you stronger

that my daughter is the bravest person I know


that while I long for you to "get it" and to understand this crazy new life we live.... I also pray that you are ALWAYS an outsider and that you NEVER experience this first hand.


 So I'm a little late... Ok, a lot late.  Due to strep and the end of the year... and going back to the doctor because she is STILL sick... I missed the "What I What You To Know" post from Diabetes Blog Week.  So here it is!!  I originally wrote this post about a year and a half ago.  I just reread it and it's every bit as true now as it was then.    I'd say that I hope you can relate - but really I hope you can't.  However, if you are already living this life then I do hope it at least makes you feel understood! 

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23 comments:

  1. Amazing as usual... thank you for sharing! Reading your blog helps me to put words to my feelings and thoughts.. I go away feeling validated and understood. ((Hug))

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  2. Hallie, you always hit a homerun with your blog posts! Thanks for putting into words what all of us d-parents feel! "that people who don't care to learn about diabetes because it's "no big deal" makes me so angry steam comes out of my ears"...I experienced this today and I was so angry I wanted to punch someone or something! But I will not stop educating and raising awareness until we get a cure for our sweet ones. I'm headed back to DC for annual conference next week to meet with our congressmen again to ask for support of the renewal of the Special Diabetes Program. I'm not giving up the good fight!

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  3. I'm crying as usual with your posts. Amazing!!!

    Love u Dmama friend!

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  4. Thank you for posting this. What a great summary of the 101 crazy-making and wildly misunderstood aspects of life with diabetes. I know the sleepless nights and swelly brain days. I've cried a river for my daughter, and then keep on going, like all D-parents. Your words really help. Thank you! :)

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  5. I'm the grandmother of a soon-to-be two-year-old who was diagnosed with type 1 about 6 months ago. My daughter directed me to your blog. How well you put into words her fears and hopes. Thank you.

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  6. I am 30 years old and was diagnosed at 3. Reading your post has got me crying, thinking of what my parents must have gone through. As a teenager I rebelled and stopped doing injections,bsl's and ended up in hospital so many times. While I have been sorry for that for so long, I never really imagined how it affected them. Now I know. Thank You for sharing this, it is interesting seeing a D struggle from a parent point of view instead of my own point of view. Lisa xx

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  7. Thank You for sharing this. I am 30 and have had diabetes since I was 3. For me it is interesting seeing the battle with D from a parent point of view, instead of my own point of view! I realise how much stress my parents would have been under, and how it would have affected them when I rebelled as a teenager and stopped doing BSL's and injections. Thanks again. xxx

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  8. Thank you. I wish every person who thinks they know a thing or two or million about my diabetes could read this.

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  9. Crying in my kitchen as of course only those walking this path can truly relate. I plan to share this with others. Thanks.

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  10. Oh YEAH BABY!!! Spot ON. EVERY.POINT. xo

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  11. Thank you!! This is exactly how I feel! My daughter was diagnosed a few months ago at 14 mos. of age, and we are in the process of trying to get her to be able to try the pump or CGM. It's a long process!

    I would just add that people really should not share their A1c. It's great that your kid has never been over a 7, but some of us have not been blessed, especially with toddlers. One sick week or one antibiotic and the number completely off. Sharing this information comes across as one parent is taking care of their child better than another which is usually not even close to the truth!

    I pray that we find the cure very, very soon!

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  12. Thank you Hallie! Coming at this from BOTH ends ( I have a special needs child AND I'm Type 1) I could just scream when people say "it's no big deal". God bless you and Sweetpea! We will make it through no matter how hard it is!!

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  13. Thanks for putting in to words how I feel! Right on the nail.. =) There are so many negative things regarding D1, but some very positve things also, like meeting other wonderful parents/ families with the same "issue".

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  14. You are so amazing! You put to words the exact thoughts I have been having daily since my daughters dx in march!!! So glad to find your blog! It's saving me in therapy costs. Thank you.

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  15. You are awesome! So glad I found your blog. Since my daughter was dx in march I have felt so alone even amoung my close friends. You summed up exactly how I feel and also my daily frustration that I can't control T1 only manage it! You are saving me money in therapy costs!!

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  16. Perfectly said! I read with tears streaming down my face! Thank you for putting everything we feel and think into written words!

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  17. Thank you for your positive attitude and encouraging words about being a T1D parent. I am truly blessed to have a child who as adapted well to his new lifestyle over the past year and is thriving as a T1D. But the frustrations that come with the disease are often overwhelming. After reading your blog, I do not feel alone in my daily mission!
    Thanks a Million.

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  18. Exactly the way I feel...

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  19. Thank you for another wonderful post! You say what so many of us feel! xoxo

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  20. Wow. Thank you so much for putting it into writing!!

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