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Growing Pains

Monday, February 24, 2014

She's getting older.

I'm reminded of that every day.  Mostly by her.

But as she's getting older I'm realizing how much diabetes care and struggles change - just like everything else.

When A was first diagnosed, shortly after her third birthday, diabetes care was solely the responsibility of Jason and I.  As the parent of a toddler, we did it all.  All the testing.  All the carb counting.  All the site changes and syringe filling and prep.

Of course we did!  You're not going to let a toddler dose herself!

We never pushed her (much) to take over aspects of diabetes management.  I've always felt that she has the rest of her life to deal with diabetes so I will do it for her as long as she wants.  That being said, it's been important for her to know enough to keep herself safe.  For example, I think it's important that she knows how to test and bolus.  But, if she doesn't want to do it herself all the time, I won't make her.  I know my kid.  And pushing to her do something is the fastest way to make her rebel.  

But as she's gotten older, she has started taking it on herself.  Willingly.

This year has really been one of changes.  Of new things.  Of growing up.

Sweets now tests herself most of the time.  She also boluses herself and counts her own carbs.  A lot of this done with monitoring.  But she's doing it.  And she's proud of herself!

I was shocked at how much her doing some of these things really lightened the load.  Being able to hand her the meter and say "test yourself" when she beeps low in the car is BIG!  Having her be able to read the labels of her food is also really nice.  And adding her carbs is great math practice!

So a little encouragement to parents of little ones... it get easier.  We are only just starting with her taking on some of her own care... And it's already nice!

Of course, with that comes new problems and worries.

Part of her wanting to do her own care is her craving some independence.  That's a good thing.  And yet, with diabetes... it's not so easy.  She wants to go to friends houses to play.  Friends I don't know.  With parents I don't know.  Who have no idea about diabetes.

I don't want to tell her No.  At least when diabetes is the only reason I'm nervous.  (Honestly, I'd never be ok with her going to a friends house I didn't know - diabetes or not.  And in some ways, diabetes is a great reason for me to be as cautious as I want.)  She tells me other people in her class have playdates all the time.  And she doesn't.  And I wonder if it's because people just don't want to deal the unknown of diabetes.

So we're working on making that happen.  Right now, friends are coming here.  She's so happy!

I find myself dreading the other parents asking to reciprocate and have Sweets to their house.  But I won't let diabetes be the reason she doesn't go.  We will work on it.  And we'll cross that bridge when we get there.  (Hopefully later rather than sooner - but don't tell her I said that!)
Sweets was diagnosed before she started school.  She's never attended school without the worries that diabetes brings.  But this year has really brought with it some of the school related challenges that people with diabetes often face.

Second grade is full of homework and tests.  We spend every night studying something.  Much of this involves reading.  Reading is something Sweets really likes and excels at.  She's a great reader and I'm always amazed at how she knows certain words.

Even knowing everything I know, I still forget how much diabetes can affect you - body and mind.

We had a prime example of this the other night.  Sweets was studying for a Social Studies test.  It was all about the Declaration of Independence and Government.  Lots of big words. But words she could easily read.

Until she said she felt low.  And she tested.  And was 42.

So she treated but went right back to studying.  I'm not going to tell her to stop...

But she couldn't do it.  She could not read the words.  She kept getting all tongue tied.  Finally she just looked at me and said, "I just can't do it.  I can't make my mouth say those words!"  I told her to just stop for a few minutes and let her blood sugar come up.  She did and few minutes later was able to read with no problem.

It was a great example.  But it just surprised me - even though it shouldn't - at how much blood sugar affects her ability to learn and think.

This week is standardized testing.  And I'm nervous.

We have seen how she has trouble reading when she's low.  We have seen her know spelling words one day and then the next (when her bg isn't in range) she is unable to spell even the easiest words.  Now she's going to be taking test.  For hours.  Every day this week.

I'm a little sick just thinking about it.

Luckily, we have a 504 plan in place that addresses the accommodations needed for such a testing situation.  Written in our plan is that A will have her blood sugar tested before she begins and will not begin until her blood sugar is within a pre decided range.  She will also be testing in a different location instead of her classroom.  The counselor will be helping her with the test and making sure she is in range throughout.  This is something that other T1's in the school do.  I know how hard it is to pay attention to all children when you have a class of 24+.  A smaller, individualized setting will help ensure a low or high doesn't fall through the cracks.  There are a few other accommodations in place as well.  All designed to make sure she has the same opportunity to succeed as everyone else.

I'm kind of freaking out about keeping her in range.  We do everything we can to keep her in range every day... Sometimes it happens and sometimes it doesn't.  We need it to happen this week.

All of this has been a bit overwhelming and hard to comes to terms with.

It's not like I didn't know these things... It's not like I had no idea that diabetes affected her brain.  And her ability to learn.  It's not like I didn't know that some things would be harder for her.

I guess it's just that we are now seeing it all happen.  And it's harder than I thought.

Just when I think that I've got this and I've come to terms with it.... Diabetes smacks me in the face with something new.

I'll be honest.  I don't know what I'm doing.  I'm just trying not to mess up.  Trying to continually walk the line...

To let her be a kid.
To let her do things that other kids do.
To make accommodations so that she CAN do the things other kids can do.
To give her the best chance possible at success.
To give her the chance to spread her wings and taste some freedom.
To keep her safe and healthy.
To do all of that while making sure she feels "normal".

And all I can say is that after almost five years... this I know to be true...

We will do our best.  We will make mistakes.  And we will get through this and figure it out.  Together.


1 comment:

  1. taking control... to freak out or not to freak out... that is the question. lol
    It's a blessing and a curse all wrapped in one tiny little D package. UGH!


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