January 10, 2011

For this, I'll make an exception....

I started off today thinking about this post and I had it all planned out in my mind as the day was unfolding.  Then the whole center of it shifted when Ally wrote me a note this evening.  In case any of our family members are reading this, or for anyone who knows just how sweet Miss Ally is...I warn you, this will break your heart.

So this is how this post started in my head....
It's 1:45 in the afternoon, Lexi is napping and I am attacking the laundry pile.  Phone rings...it's school...heart sinks!  Ms. Nurse says that Ally is 474.  I'm thinking NOT AGAIN!  (Remember my last post Just Another Day-in-the-Life where I mentioned failing to give Ally her breakfast bolus and rushing to school to pick her up to trouble shoot #s in the 400s?)  This time I'm sure we bolused for breakfast.  I sure hope she isn't getting sick.  As soon as I get her home, planning to do a site change first off, I take a look at her pump's bolus history (the pump keeps a record of each time she receives insulin).  LAST BOLUS 7:25am.  What is going on??  No bolus for lunch/correction as she was running in the 200s going into lunch (darn after breakfast spikes are still getting the best of me!) and should have received insulin to cover her carbs for lunch as well as to correct that high number.  Also no bolus for the correction at 1:45 when the nurse called me.  Is the pump malfunctioning or is Ally being careless?  So I start thinking about last week...maybe it wasn't that I didn't forget to give Ally insulin for her breakfast, maybe she is not entering it properly.  You see, Ally checks her blood sugar herself.  She tells us the reading, then we tell her how many carbs to enter, which she enters into the pump on her own.  Next she reads back the bolus and correction amount to me (basically, she's telling me how much insulin her pump is about to deliver).  Then I say ok...go for it! (or something like that)  She pushes the ACT button on her pump one more time and presto...it is delivering the insulin.  She does a great job...however, recently it appears that she is not following through on this last step. 

Then I was going to talk about my previous posts Independence and Beyond and the follow up, To Insulin and Beyond, both about fostering independence so that one day Ally will be able to successfully manage her own diabetes care - despite my own fears of "letting go" of the control. 

And I was going to talk about how wonderful Ms. Nurse is because I emailed her when I figured out that there had not been a bolus for lunch or snack...and she called me within seconds!  She was apologetic and brainstorming with me right away about how we can make sure that this doesn't happen in the future.  She and I both try to encourage independence in Ally, but she stated that she wants to make sure she is SAFE first and foremost.  That is a really great feeling to know that she is thinking about that...before I even have to say anything to her!

But that all can wait.

THIS is the real story of the day....
After a long day of fighting those persistent highs, Ally tried sneaking some of her baby sister's graham cracker snacky things.  First of all, this is out of character for Ally.  She NEVER sneaks food (at least that I know of haha!).  She will even ask for a sugarless piece of gum before putting it in her mouth.  Secondly, her dad caught her once and told her that she couldn't have any because we have been trying so hard to get her numbers to come down today.  We were playing a family card game and she threw a temper tantrum (also out of character, but she has been fighting HIGHS all day, so I chalk it up to that.), threw in her cards and stomped off.  We told her to go ahead and get her pjs on and get ready for bed.  A few minutes later we receive a note from her....a wadded up piece of paper comes flying down from upstairs, that is.  This is what it said:

Let me translate.... 

Read in your
Head!  to Adult,
not Kid.
I love you all
but it really feels
like you hate me.
1 more thing I have
to say.
Diabetes Sucks!!!!!!

by The
diabetic in
the house.
(which is funny because I don't usually use that word...diabetic)

My husband and I look at each other with very wide eyes.  I don't know what he was thinking because..remember we were supposed to be reading in our heads!  And I didn't ask.  I started marching upstairs.  My first reaction was anger.  We don't use THAT word in this house! 

Then, as I'm stomping up the stairs, I find tears rolling down my cheek.  Did she say she feels like we hate her? 

Deep breath.  I think about Meri and her fleeing unicorns...another deep breath.  I gather myself together as I approach her bedroom door, which is closed and locked.  Lucky for me Santa brought her a "doorbell" for her room.  Ding Dong!  "Who is it?  And who read the note?"  It's Mommy.  "And WHO read the note?"  With hesitation...It's...Me.  Daddy read the note.  Ok, I fibbed a little.  But I think if I told her that I read it she may not have opened the door.  She opened :)  Then I said...And I read it too.  "Come in." 

First I hugged her and she looked embarrassed.  I asked her if we could talk about it and she said yes, patting the bed next to her.  (So sweet!)  I asked her if she really felt that way...Does she really feel like we hate her?  And she said "no."  Then she got teary and said, "but it feels like it sometimes because Jessi and Lexi ALWAYS get things that I don't get."  (I beg to differ here, but in this case I did not argue with her.  I let her spill her guts.)  I told her that Lexi is a baby and sometimes we give her snacks to keep her busy (like when we are trying to play a game).  And don't judge my parenting skills on that one - sometimes you just do what you have to do! Haha!  Then I told her that we did not give Jessi any of these snacks.  "But she snuck some!"  Oh brother!  I reminded her that her blood sugar had been really HIGH and explained that we were working really hard to get it back to a good number so that she didn't get sick...NOT because we hate her, but because we LOVE her.  She hugged me and said, "I know."  So, do you still feel the way you did when you wrote the note?  "Yes."  You feel like we hate you?  "No.  I still think diabetes sucks!  Can I say that?"  I told her that it is not okay to use that word....but then I said, Wanna know a secret?  She nodded.  I think diabetes sucks too!  Her eyes got really big!  I told her that while I don't want her using that word around her little sisters, or friends, or at school, or anywhere in public really....I would make an exception and let her use that word when she feels like saying it about diabetes.  She hugged me and ran to find Daddy.  I think she couldn't wait to say THAT word again!  Oh my, what have I done? 

As I'm tucking her into bed, we say our prayers - I'm silently asking God to watch over her as she sleeps and to let her mind return to things like which shoes should I wear to school tomorrow instead of this heavy stuff - and then she turns to me and says "I kind of want to grow up 'cuz I want to be a teacher, but I kind of don't because I don't like to be alone."  You don't have to be alone when you grow up.  "I know!  I'll just tell my husband to never go anywhere that way I won't be alone."  I wonder if she means she doesn't like to be lonely...or does she mean that she is scared to be alone...because of D. :(

She must have been feeling chatty, because she continued...
"It would be cool if you could feel like everything I feel on one half of your body, but not the other."  Huh?  "Yeah, so then you'd know how I feel when I feel shaky and stuff.  But then you'd feel it when I prick my finger too and you'd be like OW!"

Apparently there is a lot going on in that sweet little head of hers.  I just hope that she continues to tell me about the way she feels and doesn't hold it inside.

(As I was working on this post, I took a break and visited Facebook for a minute.  I saw Alexis' post at Justice's Misbehaving Pancreas and had to laugh.  Justice and Ally were having the same kind of day, I think.  If you haven't seen it yet, this is a must read!)



  1. I am sitting in bed reading and in tears. I usually tear up when I read but Im crying. Her letter and everything she felt is just what Justice said this past week. I wish I could hug you both through my phone. I dont have the right words to say except Im here for you we all are and we have all been there!

    Thank you so much for sharing and linking me such an honor.


  2. *tears* It breaks my heart that D makes our kids grow up so quickly. She does sound like she's got a lot on her mind. :( You're a great mom for letting her have her voice and getting those things off her chest.

  3. ok, you were right...broke my heart! But you handled it soooooo well!
    and I love that you gave her the okay to use that word for diabetes...cuz it really does SUCK!

  4. ((HUGS)) What a sweet, precious little girl you have. I agree with making an exception for D. It's the one thing that can bring 4 letter words out of my mouth too (only THAT is not the only one). Blessings!

  5. Oh Dear Sweet Ally,

    Diabetes does SUCK. Joe likes to call Diabetes A BIG FAT DIARRHEA TURD when "D" is giving him a particularly hard time. I'll even say it on those days. I am not one for "potty talk" but, like you mom, I feel it is important to get out the frustrations regarding diabetes in your life.

    Your family loves you. We all love you. Please know you are never, ever alone. There is a seven year old boy in Vermont who "gets" you and is going through this step-by-step with you...and who checks his own number and who boluses himself at school and who has "accidentally" not followed the last step on his pump too.

    Hang in there girl.


    (Joe's mom)

  6. Poor Ally and poor mom and dad. Wow you never really know what is going on in the heads of kids. It is great that she feels she can talk to you and express her feelings...even if it is on a crumpled piece of paper. You have an amazingly sweet little girl and I love she has a door bell on here bedroom door. BIG HUGS ALLY!!

  7. Not being a D mom I usually do not post my comments (doesn't feel like I should). You're a great mom and I'm happy that Ally can express herself!

  8. Poor, poor Ally!!!! I can say that because this is an example of what goes on in our house (notes EVERYWHERE) and so often I get frustrated with Ellie, then just plain 'ol pissed off at D, but I can read your story and see it for what it is.

    You are such a good and caring mom.

  9. OK...I'm sitting in Starbucks and blubbering like a total fool....BUT it's because I GET IT! I know what you're going through! We're having lots of "Diabetes SUCKS" days lately :( It's hard...VERY hard! You're doing a wonderful job and Ally is sooooo super cute! Tell her that Kacey knows what shes feeling too! And...we let her say "those words" too. Sometimes it's good to let it all out ;) LOTS of Love and plenty of (((HUGS))) from VA!!!

  10. Oh my goodness!! That is quite a letter! It speaks like a novel in just a couple sentences.

    You are such a good mama. Sometimes we just need to tell diabetes to suck it. I'm glad she can talk to you. And if we are being honest, no it isn't fair. It isn't fair at all.

    One day at a time. Just keep swimming!

  11. I am so sorry you have to go through this as a mom. I am dreading the day that Joshua feels this way. I am so sad for her but so glad she was able to communicate wiht you. My heart is breaking for you right now... Big hugs... hey is there a dmom group on facebook I dont know about?

  12. I am sitting in my car- reading on my phone at lunch- and I'm sobbing. I love hearing what's going on in their heads... But I hate if cuz it hurts so much too. I feel like I need to drive over and give her a big hug! And YOU! Like Reyna said- there's a 4 (almost 5) year old girl just down the road who gets it too. What a sweetie. I'm just sorry they have to go thru this.

  13. Heart-wrenching and heartwarming at the same time. You are a wonderful mother to a very wonderful young lady.

  14. Oh Misty - the tears are pouring. What a wonderfully sweet girl you have there... and how my heart breaks for what she is feeling. I am so sorry you had to go through that... but I am so glad you did, because now you know that much more how to help her cope with this stupid disease. Diabetes DOES suck!

  15. Wow - that is heartbreaking. You handled it so well. Wow - I'm really crying too hard to comment.

    Just know -- I'm praying for you right now!

  16. Yep, I'm crying. What a sweet, sweet girl you have and what a blessing that she was able to share all she felt with you and so eloquently. It's heartbreaking to hear exactly how she really feels. My Natalie just turned 5 and she says some hard things, but still hard to really know how she feels about diabetes.

  17. New reader here, fellow D mom.

    What a heartbreaking letter! I'm so glad she has you and her sweet sisters to hug her tight.

    (congratulations on winning the pump pouch. I hope it puts a big smile on her face.)

  18. OMG, I am SO crying right now! I can very well put myself in her shoes! The sneaking food, the hatred towards "dyabetes" (LOVED how she spelt it, tho!), but most of all the feeling that everyone hated her. That brings me back to so many times that I felt the exact same way. PLEASE know that a lot of it is just the stress of she's starting to realize what's going on and that she is, as much as we don't want it to be true, different from others. Sorta like a "denial" stage. She just wants to be like everyone else. Right know, she's not going to fully understand the impact of her diabets, but later she will. Just be there to hold her and comfort her as you did and always, always, always let her know that you don't hate her, you love her and just want her to be as healthy and safe as she can be.


Hugs and Kisses from...


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