Saturday, January 24, 2015

I know it's hard.

I want you to know: I know it’s hard.

I almost forgot.  When you’re on the other side it’s convenient to forget all the heartache.  There is power in the success of just getting through, and we feed on that power.  We feed on the triumphant-cy of surviving the childhood years with diabetes.

Like childbirth, the pain isn’t remembered, but the rewards are.

Last week I took some time to look back.  I started with blog-post one and moved forward to the present day.

I forgot how intense the worry was.

I forgot how hard the nights were.

I forgot how the milestones were amplified a millions times over…because they meant so much more to us as they were worked for with full heart and mind.

There will be people out there who will tell you that you are overreacting to certain situations within your child’s diabetic life, and maybe you are…. but I’m here today to tell you that I get it.

I remember.

When things are new, and you are in the thick of it, and you are MOTHER, or FATHER, you are going to worry--about it all--about every little thing.  And you are going to want to protect, and fight and micromanage.

You are going to lose sleep.

You are going to wonder, “What if.”

You are going to wish, and hope, and you are going to second-guess decisions you make because they affect the person that is the most important person in your life…

A person YOU brought into this world.  A person that you want to protect from the hurt.

And you can’t.  Because Diabetes hurts.

It’s a wicked process to go through, but one that doesn’t last forever.

Hence, the purpose for this post.

If you can see, that I….Meri Schuhmacher, have been through all those same situations, and all the same worry, and have survived/is surviving…maybe it will help get you through.

Maybe it will help you to know that hard times don’t last forever and all the hard work will yield a remarkable child.

No, don’t feel bad for protecting your child.  Never feel bad for asking questions.  Never let someones eye-roll deter you. But know, there is an army of others that are doing it too, and they are doing what they think is right for their child, as you are too. And they are surviving, even thriving.

Know that all is well.

In the end it will all be ok. 

Ketones eventually go away.

Blood sugars always come down, sooner or later.

Smarties fix those lows.

Time heals wounds.

The further you get from diagnosis the better you will feel.  The timeline is sure.

If I could go back in time, I wouldn’t change anything that I did.  But I would change how I felt on the inside.  If I approached every problem with the certainty that everything was going to be ok, I’m sure I would have been much calmer about it.

So if you can, take my certainty now, and make it your own.

It’s all going to be ok.

If you have to worry, than worry.  But know that all that worry is doing is raising your blood pressure. Worry is a ride on a merry-go-round, it may keep you busy but it won't get you anywhere. It won’t make the situation go away, only actions will.

I forgot how hard it was, and I’m sorry I did.

As I sit here and write, "don’t worry," I completely understand that it's easier said than done. 

Having a child that doesn’t stop growing for 15 years is ridiculously difficult.  Especially when their body is unique and can’t be compared to another’s.

But even still, don't worry.

Keep on keeping on, D Mom’s and Dads.  You are appreciated, and loved.

You are amazing. 

And one day, you’ll be on the other side of it all like I am, and know…it’s all going to be ok.  Because time and experience will show you that each new episode of life is survivable.

It’s all going to be ok.

You’re doing your best, and that’s enough.

Rock on.  And if you have to, worry on.  Regardless, it's a life worth living.


Wednesday, January 7, 2015

An open letter to Jamie Oliver.


Sometimes we don’t know we’ve done something hurtful until someone shines a light on it.

(Hold on…let me find a flashlight…)

Generally, when something hurtful is presented, one likes to lash back with hurtful words. Tit for tat as the saying goes.  And although I’m tempted to go there, someone I love reminds me daily to, “always assume the best in people.”  So in the spirit of fairness, I'm going to go ahead and assume you just don’t know…

I assume you just don’t know that posing in front of a huge Coke bottle that says “DIABETES” is hurtful to those that have Diabetes.


I assume that you did it as a caution to others not to overindulge in sugar because it is detrimental to the systems in our bodies.  Over indulgence can cause obesity.  And I assume that you think obesity automatically means diabetes…

That last assumption—my assumption that your assumption is that obesity automatically means diabetes—well, that's where the hurt comes in, because that is misinformation.

I assume you didn’t know that.

Obesity does not automatically mean diabetes.

Many people are obese and do not have diabetes.

Many people are thin and do have diabetes.

Coke, Twinkies and Pie do not diabetes make.

According to WHO, about 35% of the world’s population is overweight and of that 35%, about 11% is obese.

According to the IDF, about 7% of the worlds population has diabetes.

Insinuating that being overweight automatically means diabetes is misleading. 

The truth is, diabetes is a complicated disease.  Sometimes, a lot of times, people get it because of their genetics.  Sometimes people get it because they had gestational diabetes during pregnancy which predisposes them to Type 2 when they get older.  Sometimes people get it because they have autoimmune issues.  Sometimes people get it because they have other things going on with their body, like cancer.  And yes, sometimes people get it because they haven’t taken good care of their body.

But as long as we define diabetes as “SUGAR” or “FATNESS” we assign shame with the disease.  Once that is established, people hide their condition…and neglect happens. And we all know neglect is never ever (ever!) a good thing.

This is what’s happening, Jamie.  Today, people have walked into their doctor’s offices and been diagnosed with Diabetes.  Their doctors have told them it is all their fault, and in turn sent their patients away telling them to fix it or else (insert a terrible number of threats here.)  Saying diabetes is their fault is just the same as telling a depressed person it is their fault.  “Why don’t you just leave and be happy?”  Is the very same as “Why don’t you just leave and lose weight.” 

Instead doctors should say, “Let me help you.  Let me help you find peer support. Diet can be a factor, but there are many others.  Let me help you find the tools to succeed.  I’ll give you meds on my end, you do the work on your end and we’ll meet back here in a month to discuss the progress.  We can get you healthy together!”

Instead.  “You’re fat.  You are sickening.  Your feet are going to fall off if you don’t lose weight.” (Doctor’s may not say this outright, but let me tell you…a lot of times that is what patients hear.)

Standing in front of a Coke can and calling it Diabetes with a smug look on your face is degrading.  You are humiliating those that have Diabetes.  And for why?  To encourage people to get healthy? 

Scare tactics do not encourage.  Ever.

Scare tactics do not motivate.  Ever.

Ever.

Ever.

I know your heart is in the right place.  I know you are on a mission to help.  But what you’ve done isn’t help, in fact, it can only be defined as mean.

My son saw your picture.  He is 17.  He has Type 1 Diabetes, also known to the world as just “diabetes.”  His is autoimmune, but that is beside the point.  You gave him the message that his diabetes is caused by too much sugar. 

His friends saw that picture and you also gave them the message that his diabetes is caused by too much sugar. 

It isn’t.

And even if he did have Type 2 Diabetes, the statistics show that sugar isn’t always the cause.  Because 35% of the world’s population is overweight, and only 7% of the world’s population has diabetes.  (And some of that 7% population is thin.)

There are so many factors to Diabetes it isn’t fair to put a blanket “FAT” definition behind it.  It’s flat out misinformation.

I’m assuming good intentions, but the truth is…your picture is hurtful.

Instead of pointing fingers, let’s help.  Let’s encourage.  Let’s lead.

And please watch this:




I wholeheartedly agree--excess sugar isn't good for our bodies.  It for sure can be part of the story, but it FOR SURE isn't the entire story.  Your picture infers that a lot of Coke leads to Diabetes. We can't pretend we have the answers when we don't.  And as Peter says, "What if some our most fundamental ideas about obesity are just wrong? I can't afford the luxury of arrogance anymore, let alone the arrogance of certainty."

The more you know…

Tuesday, December 16, 2014

What builds me.


I started this journey na├»ve. I was a selfish, young, wide-eyed girl. Too young to really be an adult; short on experience for sure.  It seemed as though I was just playing house.  Playing the part of what I always wanted to be.  Or thought I would be.  Or thought life should be.

I had no idea what trial was.  I didn’t know sacrifice.  I didn’t know heartache.

As buildings goes, I looked a little bit like this:


And then the winds came.

So I strengthened my walls. 

And when the rain fell, slanted in its haste...

I fortified the roof.

The cold and the heat, I tried to hide from those uncomfortable things, but soon learned the best way to deal with it all was just to absorb it.  I learned to face the elements that way.  Standing strong.  Enduring.

I learned survival.

I learned what love was.

I learned to hold on.

I learned what hope was. 

And through the entire process, I grew.

Inch by inch I became who I am today.


Growth.

The skin under my eyes is sunken in a bit from all the tears.

The lines on my forehead might be a bit more defined than others from the hamster wheels in my brain, turning turning turning.  Number after number.  Worry after worry.  Wonder after wonder.

But I stand.

Tall.

Glorious in my imperfections.

Owning every dent.  Every missing shingle.  Every crack.

I am me. 

And I am happy to be me. 

All of those things that have tried me, well…they made me grow.  They forged me into a resilient human being.

So today, while I had a hard day, I’m ok with it.

Because I now know that hard things make me better.

I’ll make the improvements I need to weather each unique storm. One by one...as hard things have built me in the past, and they will continue to build me.

I'll be better tomorrow than I am today.  I didn't always appreciate the process, but I've been building for so long now, the lens of experience testifies to me that all will be well. 

The hard things don't hurt like they used to.

They’re tinkering now.  Making their upgrades.  

Thankfully, I’m in charge of the direction those upgrades take me.

And I’m choosing to build up.



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.