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Tuesday, July 2, 2013

Go east, fake pancreas

Sometimes I struggle with just how much to share on my blog.  After all, it is Elise's story and I'm just a very over-involved narrator.  There are many things, personal things, that I hide away.  I hope one day Elise won't mind that I've let strangers peer into our life.  

This particular incident happened a few weeks ago, and I've haven't posted about it because my heart is still recovering.  It's a wound that cut pretty deep, and it's not just mine, but Elise's too.

But I think it's important for others to hear.  Especially those casual observers who may not have a direct connection to diabetes, but read my blog for an insight into our life.

It happened as we were getting the kids ready for bed.  Something was on Elise's mind and she asked if she could talk to me in her room.  Once we sat down the tears started.  And the sobs.  Then she blurted out, 

"Sometimes diabetes makes me want to quit life."

Ouch.

But then, the kicker, "I don't want to live the rest of my life with diabetes."

She fell into my arms and cried out for 5 year of shots, finger pokes and pump changes. I cried too.  And tried my best to tell her what she needed to hear. I think I did a lousy job, at best.

She is only a few months shy of her 6th birthday, but for almost all of her life she has been carrying this burden that hurts her so much she wants to quit.  Do you hear that?  QUIT LIFE.

For those of you that have concluded that diabetes is no big deal, I would like you to look into the eyes of my hurting child and tell her that.  Tell her that highs that come out of nowhere and last for days on end are fine, even though they can damage her body.  Tell her that lows can't feel that bad.  Just take some sugar and suck it up.

I don't expect people that have not lived with diabetes to understand.  They can't. Even I can't fully understand what Elise feels.  But I think I know where I can find some people that do.

Which brings me to the title of this post... We are headed east.  Well... southeast, I suppose.  Soon we will find ourselves amidst castles and princesses, heroes and warriors.

And we will find people that get it.

And "same same".

But most of all, we will find hope for one little girl who needs it very badly right now.

FFL.  See you there, my peeps.

20 comments:

  1. You are such a great mama and Elise is so lucky to have you. Hugs for that sweet girl (she really is so wonderful)!

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  2. Oh, that just breaks my heart that she said that! These kids go through so much. I wish I could truly feel what their little bodies feel when they are high or low, but not even us as their Moms can fully understand. We need a cure!

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  3. Joanne, this post breaks my heart, mostly because I understand. I hate that I do, and I hate that she she feels that way. But I get it. Diabetes is fucking exhausting.

    Please be sure to find me in Florida so I can share a big giant hug with you guys.

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  4. I am so glad that she told you how she was feeling...although heart breaking...her true feelings about a disease that takes her all everyday. I know you will find that hope with those who do indeed get it! Sending big hugs to you all. xoxo

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  5. My guy wasn't diagnosed until age 8, but I still reassure myself that he doesn't really remember that it was ever easier to eat/swim/exist.

    Elise knows. She knows! They all know. The jig is up.

    I'll be at FFL too---I'm going to try to meet you!

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  6. I'm reading this with tears in my eye because I completely understand and totally get it. I am giving you both a huge hug next week at FFL.

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  7. This post hit me right in the gut. I can't wait to hug both of you.

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  8. Well, I won't be there to give you both hugs. But please consider yourselves hugged.

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  9. ((HUGS)) I know that I am not able to connect with Isaac like TJ can in this arena and for that I am thankful that he isn't alone. It is one of the crappiest blessings in our family with having more than one person with t1...so, as you go East (or SE) I hope Elise finds those connections with somebody her age and those older, too. All those wonderful friends out there able to just let her know that she is never alone in all this. Neither are you :) I wish we were coming, maybe someday...until then take care and enjoy your trip!

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  10. Joanne, I get it. Adam says the same kind of stuff and it just kills me. He will say he'd rather not be alive because he has diabetes. Only on bad days...but it just isn't fair. :(

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  11. (((HUGS))) Elise and Joanne...(((HUGS)))

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  12. Thank you for posting this. I know my sweet girl gets tired of it,,and we are only a year and a half in...but she's 8...and though by now it is getting hard to remember life before, she does remember some and she sees her sisters' freedom and I know it must hurt. She will cry and get upset..and though she hasn't voiced this wanting to quit yet..I'm betting it will some. Thank you for making me aware that these feelings may come and to be ready. And, by the way...holding her and letting her cry...just letting her be sad about it for a while..I think you did a great job.

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  13. I can only imagine how you felt when she said she wants to quit life. But please remember how special and strong the two of you are.

    sweetdoodabug.blogspot.com

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  14. My heart just broke. Anyone who says "suck it up" or "its not big deal" has no clue.

    I cant wait till FFL... I hope she(and Justin) finds comfort in the same-same.

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  15. Oh my, Im heartbroken, in tears. But, I also see that Elise told you how she feels....and that in itself is remarkable, especially for her young age! ((HUGS))

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  16. My T1D son says, "I just wish I could go back, back before I was like this." Breaks my heart, these kids of ours.

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  17. OMG this made me CRY! Poor baby! As parents, we want to QuIT this disease, too, but it must me magnified x1000 for these babies! It sucks! Our only hope is a cure. And, praise her for letting you in on how she feels inside!

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  18. Today we celebrated (?) our one year anniversary of my daughter's diagnosis of T1. She is 16 years old and feels like quitting life sometimes. We made the food she ate in the hospital the first night, steak, fried shrimp, orange milkshakes and chocolate chip cookies. Her emotions were pretty tender today. I know she wants to "quit life" sometimes. Thanks for your post. Somehow it helps to hear from someone else who knows how it feels.

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  19. Wow. I hope that all of the FFL hugs and green bracelets put some smiles back on your angel's face.

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  20. Hi Joanne, Thought you might find the article below interesting. My son at 11 was diagnosed as a type 1 Diabetes. He is now 28 and still struggles everyday ,Along with me worrying. He bought this to my attention. I hope this becomes a reality. I feel your pain!http://www.naturalnews.com/028595_artificial_pancreas_diabetes.html




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