Tuesday, November 25, 2014

Special Needs

A comment was made about me or someone I know, about my children or theirs, or someone else’s and the fact that because they have diabetes they are “Special Needs” children.

And that maybe, I, or them, or someone, couldn’t do certain things, or live a certain life because of the children’s “Special Needs.”

Special Needs.  Why do those words rub me the wrong way when related to Type 1?

Probably because those words insinuate disability. And as a mother, I don't like to think of my children with disabilities.

Also, when one defines someone with special needs, it is generally defined by what they cannot do.

And what CAN’T my boys do?

Well.  They can’t be astronauts. 

And they can’t eat cookies laced with poison.

Is that special needs?

In that context I say nay nay.  Because I’m pretty sure less than one one-hundredth percent of the population will be astronauts anyway.  And I’m pretty sure zero percent of the population can eat cookies laced with poison. 

To be fair, I know it isn’t all that simple.  My boys technically do have special needs. In fact I've used the term myself to get the boys the accommodations they need for school. Obviously because they do have needs that other children do not. Also, my children are covered under the “Children with Disabilities Act,” and I'm quite thankful they are.  Because of it my boys can check their blood sugars at their desks and leave to go to the bathroom as many times as they like if they are high.  

And yes, my boys do have a special need for insulin.  That is true.

When they were younger they needed me to administer their insulin.  They needed me to check their sugar.  They needed me to count their carbs.  They needed me to insert their pump sets. 

I suppose those needs were special.  I know for sure that back then the worry was a special kind of worry too.

Maybe I'm barking up the wrong tree.  Maybe what really irks me aren’t the words “Special Needs”, but rather the insinuation that my children’s needs would interfere with my ability to contribute. 

Could such an insinuation be true?

I say nay nay.

Because even though I walked around tired for 15 years, never once did that tiredness affect my ability to love.  To help.  To serve.  To work.  My capacity to be a contributing member to the human race was never diminished, but rather magnified by my ability to empathize and my innate stubbornness to not let the tiredness get me down.

In fact I’m pretty sure my tiredness gave me a perspective of gratitude. A perspective that all of us could use some cultivation of.

Maybe I couldn’t say this 10 years ago, but I can say it now…Diabetes has given me as a mother more than it has taken.  It’s shaped me, increased my capacity to serve, and love, and increased my ability to multitask a million times over.

Back in the day Diabetes kept me busy, but these days? Not so much.  I wonder what those who don't intimately know Type 1 Diabetes imagine?  Do they imagine me spending all the live-long day caring for my sickly children?  Let me be clear: I don't spend my days at my child’s bedside, holding his hand and mother birding him his breakfast every morning.  I’m not up all night dabbing cold compresses on his head tending to his fever. 

In fact, if you were to come to our home, you wouldn’t see diabetes disrupting anything.  If you really listened, you might hear a child ask a carb count in passing, or you might see me rattling off a number or two.  But otherwise, it’s business as usual at the Schumacher’s.  Diabetes is a natural thing.  It isn’t drama.  And it for sure doesn’t supersede the normalness of life.

Around here, video games are more important than diabetes.

No.  It wasn’t always that way.  It used to be a very big deal when the boys couldn’t feel their lows.

But they do feel them now.

It used to be a very big deal when school started and their numbers would bottom out every single night.

But they don’t do that now.

It used to be a pretty big deal when I had to do all the checking and all the set changes.

But I don’t do any of that now.

Except the occasional midnight check to make sure all is well.

Diabetes doesn’t interfere with Homework.

Diabetes doesn’t interfere with their ability to do housework.

Diabetes doesn’t interfere with their ability to play, or be sarcastic, or be helpful, or wonderful.  In fact diabetes only helps them with discipline and makes them better human beings.

Don’t dismiss me because I have children that used to require special assistance from me.  That time in my life made me who I am today.  And even if they did require that assistance from me today, I’m more capable than the sum of my parts.  I learned that the hard way the past couple years.

Sometimes, things aren’t always what they seem.  Our society loves to categorize people and make assumptions about each other’s abilities. 

When that happens, everyone loses.

Look at any family and you’ll probably be able to check some kind of special needs box.


But when you do, realize it isn’t what’s in the box that matters.  It’s what’s all around it.


Thursday, October 16, 2014

"Those people."

Since I’ve started school I’ve learned a lot about myself. 

I’ve learned that I’m kinda’ anal about things.  I get used to things a certain way, and I want them to stay that way forever.  I like routine.  I like knowing the facts.  I like numbers and the way that they have an absolute answer.  I don’t like flowery speech, and definitions that are open ended.  I like being successful.  I expect a lot out of myself.

Someone called me a nerd last week.  The word actually hung on me pretty well, so I’m going to keep it.

And so it has also been with Diabetes for lo these many years.  I’ve been an over achiever.  My boys A1C’s were da bomb.  I had a schedule.  I had high expectations for the boys and myself. I worked my tail off to be an over achiever, and reveled basking in the glow of it all.  Even if it was at my own detriment, it didn’t matter.  Success takes sacrifice, especially when our children are involved.

I have worked hard, and the ones that don’t or haven't?  Well “those people” don’t try hard enough.  Or “those people” are over scheduled.  Or “those people” need to prioritize. 

It’s easy to say, or to feel, or to think, until you actually become one of “those people.”

Today I’ve officially become one of them. 

Solidarity my “those people” brothers and sisters.

This afternoon I sat in the Endocrinologist’s office knowing what was coming, but firm in the knowledge that I couldn’t do more.  I knew that the boys were doing their best.  I knew that letting them fly these past couple months was going to have ramifications.  I also knew I'd done my best, and that was all I could do.

As I listened to the words come out of the doctor’s mouth, it all felt so surreal, like I was floating above watching her in someone else’s session. 

Missed boluses.

70% basal, 30% bolus ratio.

Set changes going 4 or 5 days.

What?

Surely she wasn’t talking to us! I almost glanced over my shoulder to see whom the hell she WAS talking to, but I stopped myself because there was a wall behind me, and denial and delusion are two different things…

And just like that, I accepted my denial; picked it up with both hands, cuddled with it for a moment and then epiphanized (I just made up that word)…we are “those people.”

Overscheduled.

Doing the best with what we have.

Prioritizing things over diabetes.

Not (gasp) perfect.

Turns out that “those people” are doing the best with what they have.

Turns out that “those people” have the best of intentions.

Turns out that “those people” just need to focus on keeping their head above water.  Everything else is just semantics sometimes.

Diabetes has been the crux of my existence for 16 years, and now that I’ve handed the boys the baton I have to own up to what that really means.

It means letting them make mistakes.  (After, helping them learn from those mistakes…but allowing them mess up nonetheless.)

And you know what?  I thought it would be harder than it is.

I thought I would feel guiltier than I do.

Instead I’m just full of pride.  (Ok, there is some guilt, I’ll own that, ) but they are rockstars even if they aren’t perfect.  I’ve always said you can’t do better than your best…I’ve talked the talk, now I have to walk the walk.  They are capable.  They are wonderful.  They are learning.

I’ll help them problem solve, and I’ll support them in any form that support needs to be…but the thing is, they walked into the appointment today knowing what they did and what they didn’t do.  They are smart.  I’m kinda’ smart too…sometimes.

We’ll figure it out together.

Today wasn’t perfect.  It was messier than I’m used to, but it wasn’t a disaster. 

These past couple years we’ve become professionals feeling our way around dark places.  I think now that we have some light shed on the problems, we’ll find ways to fix them.

That will take time.  In the past I wouldn’t allow that.  In the past things need to be fixed now, over time was for losers.


But now that we’re “those people?”  We’re going to follow our peoples lead and just keep doing our best.

Now, and over time.

Monday, October 13, 2014

Blogjacked, by B.

Yep. It happened again. That kid. That “B” kid. You got it right. Mom’s been Blogjacked. Well, first things first.  I have to write that “Introduction” deal. Well, here goes.

            Today I am going to talk about random things in a random order. First of all, When I go to San Francisco this week, Dr. G is NOT going to be happy. “Have your blood sugars been high?” Well, I have an answer. “There was this thing about cake with a million carbs, and… etc, etc.” But enough about that.

            Well, schools been fine. Except for the mountains of homework. And math. And English. And history. Actually, let me redo that sentence. School has been going boring. “B, I want you to write a 70 page essay on the triangle.” Ok, it might have not gone like that, but it was similar. All in all, school is boring and all right at the exact same time.

            Well, I’m just going to give it to you straight, I’m a nerd. Not one of those smart nerds, but an Internet nerd. Some people just be all like, “Why you ackin’ so cra cra?” (Haha, random. Told you.) But you shouldn’t be rude about it. Some can relate. Some may think this is an extremely pointless paragraph. But I don’t care about those rude people. Most people I know aren’t like that. >Most<. Enough about that.

            Well, I know it was pretty short, and I’m sorry, but don’t judge. The end, I guess.


B.

Monday, October 6, 2014

It marches anyway.


I’m busy.

Diabetes doesn’t care.

I'm busy.

So Diabetes isn’t a priority.

I can’t worry about numbers.

I can’t worry about what ifs. 

I need to worry about feeding the boys.

I need to worry about the next big exam at school.

My relationships with real people take priority over Diabetes right now.

Diabetes doesn’t care.

Diabetes marches on.  March, march, march…it circles my life, steady and unending.

And every now and then I see it and say, “Huh.  Hi, Diabetes.  I don’t have time to worry about you.”

Even without all of my attention, it marches.  Which is beyond me.  Doesn’t my worry give Diabetes fuel?

It’s almost absurd that it doesn’t need my worry to continue.

Epiphany: My worry doesn’t change things.  It doesn’t change the numbers.

Doing.  Doing changes things.  Doing changes the numbers.

All the emotion I used to give Diabetes has been redirected.

The boys lead the march and I sit as a casual observer.  With their Endocrinologist appointment coming up in a couple weeks, that scares me.

(I said I’m busy, not brain dead.)

Bad number?  Fix it.

Why are you two boys numbers jumping at 10pm every night?  Sorry, I can’t tell you, and I don’t have any brain capacity whatsoever to figure it out.

I cannot put my energy into it.  I cannot give it my regret or my anger or my worry or my anything.  It’s not in me right now. 

Almost like life is a big game of Jenga, and diabetes is that lone wooden beam at the very bottom. The one beam that everything else balances on. I feel like if I try to fix the numbers, or put my energy into them…then the beam will move and everything else will topple over.

I just want to leave it alone.

I can’t handle toppling.


 If I don’t touch it, everything will be good enough.

Am I a failure if everything is good enough?

I’m sorry.  I don’t have time to think about that right now.

I’m busy.

Diabetes will have to wait.

But it doesn’t care.

It marches.

And life, and everyone important to me naturally follows the beat of its drum.

I will bounce my head to the beat and try to make something beautiful out of it...


And hope that this letting go is the natural order of things rather than just pure stupidity on my part.



(Plot twist: Just in case I am stupid, I walked away from this post and changed B's sensitivity from 3pm to midnight.  I'll spend the rest of my evening bracing for the avalanche.  Because even though sometimes D Moms can't think about it, we do anyway.)