Monday, October 15, 2012

Type 1 Update: Parenting a tweenager with T1!

Let me just state at the outset here that I'm about to do some serious venting.
I'm not gonna sugar-coat......raising a healthy, care-free child is a challenge!
Raising a medically fragile child, who looks otherwise very healthy and happy, presents a whole new set of challenges on top of the normal, every-day challenges.

Our second daughter was diagnosed with Type 1 Diabetes in February of 2009.
She was not quite 9 years old.
She is now 12.5 years old.
After her initial diagnosis, her A1C's were in the 7 - 7.5% range.
Last week her A1C was 9.9%.
For those unfamiliar with how those numbers translate, we are working towards blood sugar numbers in the 80-150 range.
With an A1C of basically 10%, her blood sugar numbers are averaging around 275.
That presents a higher risk of long term complications related to uncontrolled blood sugar.
Makes a Mama worry.

Clearly, we've been struggling to keep her blood sugar numbers under control.
Her endocrinologist just sat in his chair with our charts in his hands and a baffled look on his face.
There is no pattern.
No rhyme nor reason when you see it on paper.
Her ratios are so tight right now......1:4 and 1:3 for meals.
She takes 24 units of Lantus at both breakfast and bedtime.
And we're STILL running an A1C of 9.9%
Can you say.......mind-NUMBING!

But I do have an explanation.
We are not just forgetting that this disease must be monitored every moment of the day.
We know that she MUST check her blood sugar at the very least 4 times a day.
Before every meal.  Every time.
And before bedtime.....every. single. night.
Never a "free" night.
It's relentless.  Brutal sometimes.
It's hard to be a kid when you really can't be.
You really can't have that extra piece of cake at your friend's birthday party.
Not without another shot of insulin.
Every.single. morsel that goes in her mouth must be accounted for.
No casual grazing through the afternoon.
No free samples while you're shopping at Costco.
No snatching that extra cookie on your way out the back door.
Not without proof of that that shows up in a very high blood sugar reading later on requiring extra insulin, lots of water, and complaining from your Mom.
Every. single. time.

And what if you don't really know exactly how many carbs on your plate?
It's sometimes hard to know many carbs are in that piece of pizza, but when you add some chips and grapes to the plate......
It's just easier to guess.....
Unless you're 12.5 years old and not a good guesser.
High blood sugar again.
Pretty soon......with all the guessing, not bothering to check before you eat but just medicating for what is on your plate, stuffing a handful of chocolate chips in your mouth at 3 in the afternoon,
and voila.......your A1C is 9.9%

So I asked some advice of our endocrinologist.
I asked him how to parent that.
Should I discipline for breaking protocol?  Not following the rules?
When you're trying to train your tweenager to be more responsible, more independent, do you take away privileges when you see her not checking her blood sugars before meals?
Should I holler at her when I see her sneaking a handful of something between meals without medicating?
I don't know what it's like to live with a terminal disease that demands maintenance every. single. day.
I don't want her to loathe and hate this.
I don't want her to miss out on being a kid.
I do want her to accept it and be responsible and to WANT to have the best quality of life possible.
I want to see her just do what she needs to do.

His advice was wise and, I thought, very kind.
He suggested being supportive and to take a "coaching" approach.
Be a cheerleader of sorts.
Offer to just be with her when she does her shots.
Ask her if she needs help with counting her carbs.
Don't be negative, but be positive.
Some 12 year olds are more in tune to things and their "responsibility gene" (as he called it) has kicked in.
Clearly, ours has not yet.
I have found that our child really WANTS to please us and have good numbers.
She just does better with a companion right now.
She does NOT bristle when we gently remind her.
She generally does NOT complain......about anything related to her every day diabetic care.
She has always had a wonderfully sweet heart and delightful sense of humor.
She's just not quite ready to be on her own yet.

But don't we all do better when someone helps carry the load?
I don't know how I would cope with all I've been given without that Divine Presence to help me.

  • He giveth more grace when the burdens grow greater,
    He sendeth more strength when the labors increase,
    To added affliction He addeth His mercy,
    To multiplied trials, His multiplied peace.

    • His love has no limit, His grace has no measure,
      His power no boundary known unto men,
      For out of His infinite riches in Jesus,
      He giveth and giveth and giveth again.

  • When we have exhausted our store of endurance,
    When our strength has failed ere the day is half-done,
    When we reach the end of our hoarded resources,
    Our Father's full giving is only begun.

  • Source:

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