From Blank to Normal…

I have been unable to pull a post together on my blog for quite some time now. It has been about a year and a half since diagnosis and though I feel more confidence everyday regarding the care and management of Ellie’s diabetes, I feel numb…blank in a way.

I don’t overreact to the trials and tribulations of D management anymore…but somehow I feel like I under react at times. The sting is gone I guess (if that makes sense?)
But the repetitive drudgery of the care is still heavy.

(I do however read my favorite bloggers pages daily; comment here and there…I’m soooo thankful I found the DOC. You all are my lifeline, and eventually I hope to contribute more than I do now.)

So on with the post:
Kansas weather has seemingly taken FOREVER to level out this year. 90’s to 55 within days then back up…ugh. This summer will be our first real summer with D. Last summer D was new and I just watched for lows and fed carbs to the insulin. This year I’m going to try to be more calculated and work the advanced features on Ellie’s pump in an attempt to manage lows in a more thoughtful way.

Then yesterday happened.
Ellie and her little brother Jack were outside most of the day playing. Ellie has been running a little higher the last few days, so lows were not a concern for me most of the day. I did yard work here and there and kept an eye out for big sister – little brother tangles. Relaxed and feeling ok myself.

“Mom! My sensor came off, my pants pulled it off!” The sensor for her CGM (continuous glucose monitor) was a few days past the 7 day mark, hanging by a thread but pretty accurate so I had not changed it. “That’s ok Ellie, do you still have it?!”, “Yes, can I pull it the rest of the way off?” she says. “Yea, go ahead” I tell her. I took the receiver and the monitor from her and told her that we would put a new one on later…no big deal. She ran back up the hill, blonde hair waving, and little legs running…

”Yea, I’m normal” she hollers out.

Her words cut through me like a knife through butter.

 I think I actually lost time for a moment.

I didn’t respond to her statement. She wasn’t talking to me, she wasn’t talking to anyone. It was an announcement of sorts, glee expressed in a moment of freedom.

 Freedom…

Blank, I am just blank. Ellie will be five at the end of this week. Five. Her dialogue has always been a bit more than her age. Sometimes it’s pretty impressive, other times it gets her in trouble. We talk about diabetes probably 2 or 3 times a month. A spontaneous question from her usually opens the subject.
Playing T-Ball, “Is there going to be other diabetics like me on the team, Mom?”

Going to bed, “Mom, why do I have diabetes?”
In response to my answer to what is diabetes, how did it happen? I told her that her fighter cells made a mistake and thought her insulin making cells were bad cells, so they attacked them.
Her response, “Mom, do you think my fighter cells are sorry for their mistake?”
God yes child, they are SOOOOO sorry…
My heart just breaks.

But these days it’s blunted by something? I can’t put my finger on it. It’s probably a bit of exhaustion, but I’m wondering if it is some sort of survival mechanism that I have kicked on to keep me from those deep, deep feelings of sadness?
How is it possible for my little girl of five years old, only a bit over a year into diagnosis to have these seemingly grown up thoughts and questions?
Normal?
I just can’t shake it.
How does she even know the term normal, let alone the context?

Simply amazing to me…

So extending boluses, experimenting with temp basals, calculated snacks and bolus experiments…I think I’ll give it a bit more time. I think I’ll just keep plugging away at D as I have been and focus more on the little girl that has all these questions and told me that “she is not normal like the other kids…that she has all these extra things on her that make her different…that her insides are different from everyone else because she doesn’t make insulin”. Maybe I have been blank lately so I have room for her needs and thoughts as she expresses them. She doesn’t need a D momma who breaks down in pity when she is feeling down and confused. She needs a level head that doesn’t overreact to her concerns and questions.
I am both amazed and saddened by my child’s words and feelings. I just hope I can be a source of power and acceptance for her.

I really hope I get it right…not just for me…but for my little Ellie Lee.

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21 Responses to From Blank to Normal…

  1. Heidi says:

    This post brought back a memory for me. One evening, when Jack was five, we were sitting around the dinner table eating edamame, among other things. My daughter said, “What if these were magic beans?” So I said, “What if? What would you wish for?” She said she would wish for a dog. Jack said, “I’d I were normal again.” Similar to your response, his words “cut through me like a knife through butter.” I understand how you’re feeling right now.

    I am sure you will be “a source of power and acceptance for her.” 🙂

    • Thank you. It makes me feel better to know there is another 5 year old out there thinking about “normal”! Kids are soooo quick to pick up phrases, funny when out of context…but normal in context is a little hard to swallow! Thanks again!

  2. Reyna Maher says:

    Such a powerful post Sarah. It is good to hear from you again through here. I always enjoy reading you AND I have missed you. I recognize this place that you are at now. I think it is a phase. We all hit them at different times and stay there for different lengths…it is part of the grief. You are doing an amazing job by Ellie. You continue to parent and pancreate your heart out girl. Sounds like you have some fun “tweaking” planned for the summer!!! You are amazing. Chin up. (((HUGS)))

    • I hope it’s a phase! You are right…the grief is still there. I can’t imagine going through this life without you and the other D-mama’s and papa’s. Loves and thank you for always being there for me!

  3. Lorraine says:

    Oh my gosh – you will SO get it right. Diabetes is complex and presents so many complexities. There are so many ways to go about it and I have no doubt what you do next and after that and after that – will all be right. Even the bumps in the road – they will be part of the journey, the whole of which will be you getting it right.
    It’s all still new and raw even though you feel like you’ve been at this for a while. For me, each year I made some progress emotionally to cope, but it wasn’t like I was able to flip a switch and at the one year mark be okay with it all. I was better, then better, then better. One step at a time.

  4. shannon says:

    Thanks for this post. Recently L was involved in our local JDRF fundraising gala and the coordinator wanted each kid to answer the following question: “What would a cure for diabetes mean to you?”

    I asked her and after thinking for just a moment, she replied: “It would mean to me that I could be like every other person and be sort of normal.”

    The honesty took my breath away, and she’s 11. I can only imagine how it must have felt with you and Ellie. I think we all hope we can get it right.

  5. Denise aka Mom of Bean says:

    It amazes me how D makes our kids grow up faster than the ‘should’ and way faster than we want them to! Bean makes comments here and there (none that pop into my head at the moment, but I was up a lot last night with a stubborn post-pod change high, so I blame sleepiness!)
    Sounds like your summer will be a big science experiment! This summer is our second with D, but since Bean was dx on June 5th last year, it will be a very different summer!! Looking forward (kinda) to seeing how it will all work this year.
    🙂

  6. Wendy says:

    This post was beautiful.

    I have found it hard to face the things my girl says sometime…but, at the same time, her words are like a gifted opportunity to see deeper into her heart. And, while it stings, it’s also a little reassuring. Reassuring that she understands…she knows that something is different….she’s accepting that something is different, even when she has questions I cannot answer…she’s coming to terms with it.

    It will be impossible to fail her, my friend. What you’re experiencing right now is a phase of the process. We all go through different phases at different times. T1 is a very technical task to manage…but it’s very emotional as well.

    You’re doing a fantastic job, Mama Pancreas.

    “You are braver than you believe, stronger than you seem, and smarter than you think. ” — Christopher Robin

  7. Jules says:

    What a return post! I really think this is a phase. I have times of going through it even now and we are a year ahead of you in this. Frank is five in July. I actually felt numb for so long that I went for therapy in the end, which really helped me focus and feel understood. It is a lonely road and I felt very isolated and still struggle when given stupid responses like “Oh, it’ll get better when he’s older”. I just wanted to scream and say, “Yes, but what about the decade before that!!”. Be kind to yourself. I so wish I could pop over and provide a shoulder for you. Would a cyber shoulder do?! Turn to the DOC. They’ve all either done it or are in the middle of it too. Much love and a big old shoulder from England.

  8. I follow you very close my friend and you are an inspiration to me! I’d rather pop over to your place! HA! Thank you and loves to you!

  9. Stephanie says:

    I’m glad you are back! What a powerful post. It breaks my heart when Adam says things like that….just this week he said, “I wish there was no throwing up and no diabetes.” 😦 Although he doesn’t express it a ton, I’m sure he wishes to be “normal.” It is so hard as a parent to watch your child just want to be a kid….

  10. Sarah says:

    I just wanted to add that someday it will be “normal” – I know that sounds strange, but honestly for some people with diabetes it is. My husband has been diagnosed with diabetes for over 20 yrs and I asked if he’d be one of the first in line for a cure when/if the time came, and he said no. He said it’s not really that big of a deal to him. For him the only part he truly wishes were different are the finger pokes – somehow everything else is just like breathing, he’s become so in tune with his body and doesn’t feel abnormal by what he does in his daily management.
    I hope that helps a little. Trying to give a little ray of sunshine on this tough topic, sometimes I think it helps to see it from another view.
    And randomly when we were dating I never saw him as different, either. Never.
    (well at least not because of his diabetes!)
    Take care and enjoy the summer 🙂

  11. Amanda says:

    Amazing post. Thanks for sharing your thoughts. When I take Emma’s pump off for site changes she says, “I’m FREE!” Kills me every time…

  12. Ugh! Freedom…I’m telling you it’s such a BIG word! Heartbreaking when a kid is using it. Loves.

  13. Meri says:

    Hey, thank you for your kind comment! I wanted to pass on this link to you and your friend. I don’t know…it brought a lot of perspective for me. This guy is really great. 🙂
    http://www.childrenwithdiabetes.com/video/JoeS2.htm

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