Life for a Child

Tuesday, June 26, 2012

Hope on Two Wheels (or four)

On Saturday, June 23, 2012, an amazing group of people set off to do something incredible!

Twenty four cyclists from all over the US met at the JDRF Headquarters in NYC to begin a ride of over 250 miles that will culminate in Washington, DC.  They will ride NON STOP until they reach their destination.



WHY are they doing this?

To make it short and sweet, they are doing this to raise awareness and ultimately find a CURE for type 1 diabetes.

Pretty cool, right?

To find out more about Hope On Two Wheels and the founders, Scott Kasper and Mike Chadwick, check out these links...

Hope on Two Wheels website

Hope on Two Wheels Facebook Page

Hope on Two Wheels in the News (great article)

For some reason, these stories always inspire me.  People just like you and me who are doing incredible things for a cause they so deeply believe in - I love it!

And, if you know me, you know that one of my big goals is to do one of the JDRF Ride to Cure events.  I simply don't have time for the training right now.  And next year I'm focusing on a local half marathon (another lofty goal...I'd walk - and I'm at LEAST doing the 10k... but I'd LOVE to do the half).  But one day...

I had these amazing folks on my mind on Saturday as we headed to a local ice cream shop for dinner and a treat.  We decided to walk there.  And Sweets wanted to ride her bike.

Now, she's new to the bike.  She's never showed much interest in it before this year.  And she's NEVER biked that far before.  However, after a few warning that no one would be carrying her bike at any point, she decided that she was good to go.



And so we went!

It wasn't long before J realized that we had forgotten something.  The diabetes bag.

Well, crap.  Not only do we not have her life sustaining equipment - we don't have anything to give her insulin with!  J quickly volunteered to go home and get it. He said he'd grab the van and meet us there ( He's no dummy!).

We were pretty sure that she would decide to ride home in the van.

Nope.

She rode to and from the restaurant with hardly a complaint.  I was very proud of her!!



As we were walking, I was trying to decide if it was a BAD thing or a GOOD thing that we forgot the bag.

It's definitely a bad thing in the sense that her important medical equipment is in there and without it we can not keep her as safe and healthy as possible.

But it's kind of a good thing, too.  Because it shows that diabetes does not rule our lives.

It may not come across in a blog that I write specifically about diabetes, but we really do not think about diabetes all the time.  We have finally gotten to a place where it is a  PART of our lives.  But it's not our whole life. 

When we think of going down to town to the local ice cream shop, we think about having cash.  And getting her helmet on.  And making sure she understands that Mommy is NOT carrying the bike!!  Diabetes just isn't the first thing we think about.

And while that means that no, I didn't check her number before she got on her bike and that was probably not the best idea (However, we do really rely on Dex to alert us and we are lucky that it is so accurate for her).  It also means that we see our child as a CHILD.  Not just a child with DIABETES.

And sometimes, that's just what you need to do!

Here is a video I shot of Sweets biking in our neighborhood.  As you can see, she needs to work on keeping her eyes on the road!


I like what she has to say!  She may have mixed up where the Hope on Two Wheels folks were going - but she's got it right! 

If you fall off, the important thing is get back up and keep going!  You don't quit!

Love that girl!

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Tuesday, June 19, 2012

From This Moment


From this moment...

From this day forward...

Sweets will have lived longer WITH diabetes than WITHOUT.

She's 6 years old.

*sigh*

(For those of you wondering, J did the math. I assumed it would be her 3rd dx anniversary but he pointed out that it would be longer...  Blah; blah, blah... Math, math, math... June 18, 2012.  I, however, pointed that TECHNICALLY she had diabetes before she was diagnosed - probably before her third birthday looking back at those pics. So.... Whatever. Here we are!)

It's hard for me to put into words how I feel about that.

It makes me cry.

I hate it.

It's not fair.

She's SIX. She should focused on friends and playtime and dancing and Justin Bieber. Not shots and site changes and ketones and blood sugar.

It breaks my heart.

When I think about it, it makes me really sad.

And I grieve.

Because even though she is a wonderful, healthy, happy, active, independent, spunky child WITH diabetes (and quite possibly BECAUSE OF diabetes)... I grieve for the person she would have been without it.

The little girl who would not have been forced to grow up too fast. The one who knew nothing of carbohydrates. The one who didn't feel different.  The one who didn't miss out on things due to being sick with large ketones and high blood sugar. The one who isn't used to having her flesh pierced everyday. Not used to seeing her own blood all the time. The one who has never been to a hospital and certainly doesn't know her way around more than one.

I'm her mother. I can grieve for THAT girl.

But the truth is, THAT girl doesn't exist.

Diabetes took her away from us three years ago. We will never know her. SHE will never know that part of herself. It disappeared so quickly, so silently that we didn't even know it was gone. 

This fact isn't something I think of often. I just don't like it. So I push it into the dark corners of my mind and lock it away there.

No, that girl doesn't exist. And I'm ok with that because I'm pretty head over heels in love with the girl I've got!  She's perfect the way she is!

what I choose to focus on instead is this...

She is ALIVE.

We are so BLESSED.

How did we spend this monumental day?  Going to tennis lessons. Going out for chocolate chip waffles. Playing cars on the living room floor. Going swimming with wonderful friends who we know BECAUSE of diabetes.

Perfect, if you ask me!!

It wasn't that long ago that diabetes was a death sentence. And not only do we still have our little girl alive and thriving three years after her diagnosis, her future is  bright and promising! 

She IS only SIX.  

Twelve more years and she's an "adult". College... On her own.... (scares the crap out of me, btw). But just think of all that has happened in diabetes management and care in the past 12 years. Who knows what's in store in the next?!? 

We have HOPE.

I suppose the question is this...

Where do you put your emphasis? 

From this day forward, Sweets has lived longer WITH diabetes than WITHOUT.

That makes me sad.

From this day forward, Sweets has LIVED LONGER with diabetes than without.

That one makes me want to celebrate!

From time to time, I have to come to terms with the first one. It seems to be a bit of a continual thing... A process...

But I just have to keep putting the emphasis on the living.

And the living is pretty darn spectacular.

Even with diabetes along for the ride.


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Thursday, June 14, 2012

Do You Know How Lucky You Are?!?

Tonight, I was checking in on Facebook when I noticed something familiar!  This post was making the rounds!  

I was surprised!  I originally wrote this post back in December 2010.  More than two years ago.  But as I reread it, I have to say that it's as true today as it was back then.

As bloggers, we are honored and humbled that people not only READ our words but SHARE them!  We LOVE it when you are touched enough by something that we have written to share it with your friends and family.  We ask just one little thing... 

Please, PLEASE give credit to the original author and please, PLEASE do not "edit" our words.  Most blogs you read are copyrighted.  But more than that...  My words are like little pieces of my heart.  My blogs are like children (in a way...).  When someone takes those words and shares them without giving credit and edits them... it hurts.  It's like someone posting a picture of your child but claiming that the child is theirs and not yours. 

That is what happened to this post.  

Then others started posting it, too... never knowing it had been taken without permission.  Of course, they felt terrible when they realized what happened.  But it wasn't their fault!  It reminds me of this...


Wise man....!  

Anyway, I'm flattered that my words strike enough of a chord with anyone that he or she would have the desire to share them!  And I love for you to share them!  Just please "Give Credit.. Don't Edit!"  Ha!

And without further ado... here is the original post - circa 2010!


Do you know how lucky you are?


If you've never had to pierce your child's flesh.


If you've never entered your child's bedroom with baited breath, waiting to know they are alive before you exhale.


If you have - but know that that possibility is remote and highly unlikely.


If you don't see your child's blood every single day.


If you can feed your child without thinking twice.  


If you don't have to count every morsel that goes into their mouths.


If you can send your child to school without any extra care, notification, preparation.


If you can let your child go off to play at a friends house with any added stress or explanation or directions.



If you can sleep for more than 3 hours at a time.



If the medicine cabinet on your bathroom is still functioning and has just about enough room.



If you don't have a sharps container in your house.



If your pharmacy does not know you well enough to call you by first name.



If you don't have to BEG your insurance company to give you 

enough supplies to keep your child healthy.



If you don't visit a hospital every 3 months.



If you don't worry when your child falls down when playing or falls asleep in the car that he or she is actually passed out from a hypoglycemic episode.



If you don't carry around an enormous amount of medical supplies every where you go.



If you don't know what normal blood sugar is.



If your life has never been divided into before and after.



If you never spent a week in the hospital learning to keep your child alive.



If you don't fear a simple cold or a 24 hour stomach bug.  If you'd never even imagine that it could land you in the ER.



If you don't have to FIGHT so that your child can be like everyone else.



If you don't know what insulin smells like.



If you don't know how to fill a syringe. 


If you don't juggle carb counts, carb rations, ISF's, and IOB information at the same time.



If you have no idea what any of that means.


If you've never had to hold your child down to give her a shot.  Multiple times a day.  Every day.  


If you've never listened to your child cry and scream, "NO!  Mommy, Don't hurt me."



If you've never had to answer your child when she asked, "Why me?  Why am I different?  Will it ever go away?"



If you don't stare death in the face every day.



If you don't really know anything about Type 1 diabetes.



Do you know how lucky you are?  Do you know how much you take for granted every day?  Do you know how much easier life is without diabetes?



Do you?



Before April 27, 2009 - I didn't.  I had no idea.  I had no idea how lucky I was.  



I had no idea how easy meal times were.  I had no idea how simple it was to get my child a glass of juice or milk.  I had no idea what a "bad cold" or "illness" was REALLY like.  I didn't know anything about carbs.  Or insurance.  Or needles.  Playing, dancing, going to school... it was all so easy.  



I had no idea.  I took so much for granted.



But now....



Now I'm on the other side.  







And do you know how lucky I am?


I know how to fill a syringe.



I know how to give a shot and insert a cannula.



I know how to count carbs and calculate insulin doses.  



I have insulin to give my child.



I have a pharmacy staff that is caring and kind.



I have a top rate children's hospital to treat my child.



I have a closer family.


I have deeper relationships.



I have enough supplies to keep my child alive and healthy.



I have been humbled by something bigger than me.



I have a school and teachers who love my child and care for her like she's their own.



I have learned to ask for help.



I have learned that I can't do it all.



I have learned to cherish the good days.



I have learned to enjoy the moment.


I have learned how fragile life is.


I have learned how strong I really am.


There are days that I hate diabetes.  I hate what it does to my child and me and my family.  I hate what it means.  I hate all that we have to do to just to appear normal and live a normal life.  I hate all that it takes away.  I hate all that it demands of us.



There are days.... days when I wish it had never entered our lives.  Days when I am so incredibly jealous of those whose lives are so much easier.  Of those who don't deal with diabetes.  Of those who don't worry daily about their child's mortality.



And when I have one of those days.....  I try to think of lucky I am.  Of all the good D has brought into our lives.  



Because I can't make it go away.  



All I can do is look for the blessings.  And feel lucky.



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Monday, June 11, 2012

The Best Laid Plans...

How does that saying go?

"The best way to make God laugh is tell Him your plans"? 

That pretty much sums it up today.

Today we were SUPPOSED to be spending the afternoon at a baseball game with JDRF.  It was a Family Walk Team Rally.  I was supposed to give a short speech and then talk to families about creating a walk video.  Then we were supposed to enjoy a baseball game!

Instead, we spent the day on the couch with Sweetpea.

We have battling overnight basal rates.  Back and forth across the tightrope we go. 

She spent the night running a little high.  Not CRAZY high - but high.  And corrections were not bringing her down. 

By morning, her blood sugar was 330.

But ketones were 3.2.  In case you don't know the blood ketone conversion (and although they are expensive little buggers, I LOVE being able to test ketones with blood instead of urine.  Not only is it more accurate, it's easier and less messy!) that translates to SUPER HIGH KETONES.  Anything over 1.5 is high.

I woke this morning to Sweets poking my shoulder and saying, "Mommy.... I'm gonna throw up."

And she did.

A lot.

She spent the morning retching into a bowl and laying on the couch.  We did a pod change and a sub q correction.  Her blood sugar started coming down pretty quickly.  Ketones took longer. 

Finally, this evening she showed only trace. 

For Sweets to spend more than 15 minutes sitting down, you know she doesn't feel well.  Poor girl was a sick cookie today.

We decided against calling the hospital.  I know they would have heard ketones and throwing up and ordered us to the ER.  We wanted to give it a shot (har har) at home before taking her in.  The ER is a really crappy place to spend the day.

Even so, Sweets was really bummed to miss out on the baseball game and swimming with friends. 

And that got me to thinking...  how often does diabetes mess up our plans?

Of course, there are the days like today.  The times when a ripped out site or high blood sugar or low blood sugar forces us to immediately change our plans.  Whether it's eating something or going somewhere or doing whatever we had in mind.

Annoying.

But it's more than that....

What about the friend - or friends - that you were so certain you'd be close to forever?  And one day you realize that you haven't spoken in weeks?  Or months?  Or years?  And you WANT to change that and do something about it... but then you worry that they are mad at you for dropping off the face of the earth.  Or you can't find their phone number.  Or you'd have to arrange a sitter in order to go out and that's whole different problem.  And you're just so darn tired...  You say you'll do it tomorrow.  And tomorrow always seems to be a day away.

What about your plans to have a bigger family?  Another child?  And now you don't know how you'd ever manage...

What about your dream of going back to school?  Or going back to work?  But then there's the issue of child care...  And there isn't always someone willing to learn how to manage diabetes.  And what if you didn't have enough time to focus on blood sugar patterns and changing rates and then your child suffered? 

What about that vacation you were planning on taking?  But now you have no one to watch your kids.  Or you can't afford it because you spend so incredibly much on health care and supplies.  Or you're too scared to travel with diabetes.

What about the job you want... You'd like to switch jobs but then what about the hours?  Or the benefits?  And you can't risk losing your insurance or your salary.

What about that get together with friends?  But you haven't seen them in so long.  What would you talk about?  Your brain is so consumed with numbers and the lack of sleep has turned you into a mush mind.  You're not sure you could string words together.  And who would watch your child?  Or if your child went, you think you'd just spend the entire night watching him and wouldn't enjoy yourself anyway.  What if someone ask you how she's doing.  And you just don't know what to say?  And you're tired of saying "fine" because it's not exactly true but no one would really understand if you tried to explain it.  And they probably all think you talk about diabetes way too much anyway. 

Diabetes is like throwing a pebble into a pond.  The ripples go on and on and on...

And it's hard because most of the people who were in your life BEFORE don't see all those ripples.  They can't comprehend how those ripples end up touching every part of your life. 

Those ripples push you out into the middle of the pond.  And it's lonely there. 

You had a life back on the shore but when you look back that seems like so long ago you really can't remember it.  And you're different now anyway.

Luckily, there are other people in the pond.  Other people fighting the ripples.  Other people who know what it's like.

Same Same.

I wish I had some incredible words of wisdom. 

But all I've got is this:  I think there are times when we have to stand up to diabetes and say YOU WILL NOT RUN OUR LIVES.  We're going to that party.  We're taking that trip.  We're having another baby.  We're going back to school or work. 

And there are times when it's ok to just say Well... change of plans.  I'm going this way now and that's ok.  You are welcome to join me - but I can't go back.  This is just the way things are now.  This is way it has to be.

So I'll leave you with some of my favorite quotes from Pinterest...  Knowing that we are living the lives that God intended for us.  And that only constant in life is change.









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Wednesday, June 6, 2012

Soaring to a Cure

Saturday night was our JDRF Gala!

And it was a BLAST!

This year the Gala was held in an aircraft hanger at a local airport.  The theme was "Soaring to a Cure".  This was a nod at the history of aviation in our city.

It was a BEAUTIFUL night!  The night was lovely and cool.  The hangar was decorated beautifully.  At times, the doors were slid open to reveal the planes and runway outside.  Very cool!  There was a live big band.  The auction items were all fabulous (including the puppy - who I REALLY wanted to take home!  And had she been an alert dog?!?  Oh yeah - bidding would have been ON!).

It was a wonderful night!

And we raised a decent a chunk of change for JDRF!

The best part??

Watching my little girl dance the night away!

Sweets made a fast friend with a little girl who was also there to be a Youth Ambassador.  We've met her and and her family before - but since we don't live super close we seem to only see each other on occasion.  The girls, however, became inseparable Saturday night!  I'm hoping we can get them together more often!



Are they not adorable?!?  Who could resist donating to find a cure for these two cuties?!?

The girls hit the dance floor and they TORE IT UP!

Us Moms hung out on the edge of the floor and laughed at our silly little girls!  They were the hit of evening!  They were dipping each other and twirling each other... it was so sweet!  We did both end up treating lows due to the massive dancing!  Of course, the dessert bars also helped keep those bg's up!

The girls danced until 11:00!!  Way past both of their bed times!  By the end of the evening, they were practically holding each other up!

We agreed - Yes, it was late.  Yes, it was past their bedtimes.  Yes, we should probably leave...
But they were having so much fun!

And really - this is THEIR night!  This night is for THEM!  All the decorations, all the food, all the fancy dresses, all the expensive auction items... it's for THEM.  To help find a cure for THEM. 

So we let them dance!

Sweets made a video for the Fund-A-Cure portion of the evening.  She was sick the day we went to have it filmed.  (Yes, again!)  But she was a trooper!  She could NOT remember exactly what to say - and the plan was to edit it out.  But just watch and you'll see that the end result was just perfect!



I highly encourage you to get involved with your local JDRF Gala if at all possible!  I usually go as a volunteer!  And it's always a blast!  There is so much about diabetes that is just NOT FUN.  The Gala is great way to add a little fun to an otherwise... yucky... disease!


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