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.
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?
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.