I Want You to Know

Monday, December 27, 2010

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 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 know 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 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 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.



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31 comments:

  1. Great post! You have a great way of articulating what I am thinking!

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  2. Great post. Definitely thoughts I have each and every day.

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  3. omg im crying. And postng this to facebook. Awesome post. Thank u!

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  4. Yeah.

    What she said.

    Because I'm too tired to say it myself right now.

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  5. I think you said it all and then some! This was a great post :)

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  6. Thanks Hallie. As always, you say it with a passion that many of us are unable to convey through our writing. I love this...every point is spot on.

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  7. What a sad, beautiful post. The trend I have noticed with most D Mamas is that they don't give themselves credit for what they are creating. A LIFE! BECAUSE OF YOU, your little girl will grow up, be healthy, and have everything everyone else does. Not many children are lucky enough to have awesome parents like the ones on the DOC. You don't have to worry about what you don't do right or what isn't perfect. It already is perfect. You are a hero, never forget it! HUGS TO YOU SUPERMOM!!!

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  8. perfect, Hallie, simply PERFECT! Thank you.

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  9. Amen, Girlfriend. I wish people understood.

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  10. Love it! Great post! Thanks for sharing!

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  11. You have a gift, being able to write like this, and explain so concisely and accurately what we live...

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  12. Wow. You put it perfectly.

    Our medicine cabinet looks exactly the same, though it's next to our craft box. Depending on how close we are to our monthly gear shipments, we either have cartridges or crayons all over my dining room.
    : ) Thanks for putting this so well. I'm going to share it with everyone in our life. Great job.

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  13. Perfectly said!
    My "child with type 1" is now grown, independent and out of the house. I still wonder if his bg is rising or falling. It will never leave us until there is a cure, and there will be one!

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  14. *HUGS* from one Type1 mom to another.

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  15. that was was a fablous post and you always know how to put into words what I am thinking thank you!

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  16. I have helped you fill that ocean, Hallie. Together we will get through this and raise such wonderful and strong children.

    I LOVE this post. It is exactly what I wish so many people in my life knew. I hate to say it but I almost HATE it when people ask me . . . How is Nate doing? It's not a cold people - he's not getting any better or worse - - - it just is what it is.

    I hate diabetes today! But I love you and your sweet SweetPea!

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  17. I can so relate to this, thank you! And I am the type 1, no kids...43 years of this disease doesn't make it get better with time, but the technology has certainly gotten better. Pumps, cgms's, not those old tes-tapes and things. I am crying as
    I type, this has touched me, and Sweetpea is a beautiful little girl with very great parents. Thank YOU for being her mom. Lori W

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  18. I just discovered your blog and unfortunately, have recently joined this club I never wanted to be a part of. Never imagined being a part of. My beautiful, HEALTHY, 8yo was diagnosed this summer. You articulated my thoughts EXACTLY! We just got back from a ski trip and I couldn't believe that I had to test my child on top of a mountain. I had her kit and her pen(we're still doing injections) and snacks and needes, and test strips, and everything zipped into the many pockets of my ski coat. I was NOT going to let D get in the way of our vacation. As I skiied behind my daughter, I was brought to tears, watching her sail down the mountian with such joy and pride. I wanted to yell out to everyone, "She was just diagnosed with T1 D's and look at her go!"

    for me, I think the worst thing people have said to me is, "at least it's not cancer." I could scream!!! That is not a helpful comment AT ALL!!!!
    Thank you for this post, and this blog, and for putting my thoughts into words.

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  19. Your posts always make me tear up. I feel like I could have typed this same exact post because these thoughts echo mine completely. Maybe I will just save myself the trouble and put a link to this post on my blog :-)

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  20. Unfortunately everything you said it absolutely correct. :-(

    Though I do hope to see some cure in my lifetime (at least 20+ years left I hope).

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  21. I might paraphrase a little bit, but this is everything I feel and always on my mind. My hubby and 2-year-old have Type 1. Why do our lives have to be different? Others really don't know what we deal with. Always asking if she gets shots. Yes, since day 1! Thanks for blogging about it. I think I need to express myself more when it comes to diabetes.

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  22. I'm sorry, I feel you are not looking at this the right way. My daughter was T1 at 18 mos.(she's 14 now) and, yes it's hard, it's an adjustment. BUT your daughter can live an active, healthy life. Your daughter doesn't have cancer and get chemo pumped in her body. She isn't physically disabled, mentally challenged, or have mental health issues. You are looking at this all the wrong way, and if you continue, your child will begin to look at it the wrong way too. The best thing you can do for you and your child is to find the positives in diabetes. When my duaghter started to complain I took her to the hospital to see all the dying kids. I taught her that she can become more healthy and she can teach others to understand this very misunderstood disease. I taught her that she can only do her best to control this disease and that she should never be obsessed with it, or let it take over her life. She is a VERY active, social, leader who is a role model to everyone around her, even adults like me. Maybe you were just blowing off steam, but if you are letting T1 rule your life, then it will rule hers.

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  23. Thank you all for the sweet comments! I really appreciate it and am glad that you liked it and can relate.

    To the last commenter who did not leave a name... check out this post:

    http://www.theprincessandthepump.com/2010/11/you-are-more.html

    or really just read back to so many other posts...

    You would see my daughter is an active, smart, healthy child who doesn't let anything or anyone hold her back.

    I don't think I'm looking at it wrong. I certainly don't let it rule our lives or treat her like an invalid. This blog is a place for me to express my feelings. You sound like you're in a great place... and that's wonderful. You've been at this much longer than I have. We haven't even been here for 2 years. I won't apologize for having moments when I still grieve. Or for how I deal with this new life that we were thrown into.

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  24. Hallie - I think you are fantastic and you are an amazing mom! This is where you are supposed to blow of steam -- we get that.

    I hope anonymous reads the other posts and these comments. It's great that Ms. Anonymous is in such a great place but we all have our bad days. How can we not if we are taking proper care of our children. Diabetes can really beat you down if you are doing everything in your power to take care of it properly.

    As a mom with a child that was dx at 14-months - I hope in 14 years I am in a better place but I also hope that I still feel these emotions because how can we not? These are our children.

    And - I'm sorry but comparing diabetes to cancer is one of my biggest pet peeves EVER!

    One of my closest friends has a daughter with BRAIN CANCER and she tells me all of the time that she would not want to change places with me. We have a mutual respect for one another and love each others children deeply.
    But you just cannot compare diabetes to cancer!!!!!!!!!!

    Love you, Hallie and you keep blogging, Girl!!

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  25. Okay, reading this for like the 5th time I realized I never commented on it! What a friend I am!

    I agree you are an amazing mom, Hallie and if Anonymous wants to think otherwise then let her. She doesn't know you like we do.

    Wonderful post! Thank you for opening your heart up to us. ((hugs))

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  26. Wow - what a mouthful, but you definitely hit the nail on the head! It is so tiring to try to explain to others who really aren't dealing with diabetes on a 24/7 basis with someone you care more about that anyone or anything in the world. Thank you for giving us a place to feel known - no matter how hard our family or friends try.

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  27. My Jack just turned 3 and was diagnosed 6 months ago. I am a pediatric nurse, so I see bad, really bad, so I get it....but don't say it people!!! We just need you to say "love you girl" or "thinking about you" or "Jack looks great". I get the "it could be worse" or "at least it's not cancer" too, but my biggest peeve is "it's so lucky that you're a nurse". I feel like saying, "why, because I know how to give shots?" this is MY kid, it's different. If anything, it's worse. I've been taking care of diabetic kids on their worse days for 9 years now. I only see them at diagnosis (and we all know how horrible and overwhelming that is, you don't even know what to ask or what you need) OR when they are in DKA. That's it. I haven't seen healthy, thriving diabetics. I have seen broken parents and sick children and now I am on the other side. Being a nurse sucks. Ignorance is bliss sometimes, and trust me, I am thankful for the knowledge I had to catch it early and avoid ICU, but the truth is (as you said) Diabetes doesn't fight fair, knowledge or not, you can follow every rule, weigh/count every morsel, calculate with precision and get 142 one day and 314 the next. No rhyme or reason, hitting below the belt, making up rules as you go along.....it's not fair. Thanks for verbalizing these feelings and helping me not feel crazy, it takes all my energy just to breathe in and out some days. I'm tired. I have black circles under my eyes too. and I pray for a CURE daily, hourly, but until then I'll fight each day to keep Jack as healthy as possible (thank God I'm a nurse =))

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  28. What a great post - thanks so much for sharing your thoughts. You really summed up so many of the ideas/thoughts/frustrations that we all, as parents of a child with type 1 diabetes, share.

    I look forward to reading more of your blogs!

    Jen
    @jenaragon

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  29. Can I clone your article to my blog? Thank you…

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  30. yep that's it. First time I've cried (and laughed) since my daughter was diagnosed. It's her first diaversary in 17 days.... thank you for your post.

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