Life for a Child

Sunday, October 31, 2010

October's Blogger Basal

It was a dark and stormy night....  All Hallows Eve.  

As the wind whipped around the barren trees and leaves whirled down the dark street, hardly a light could be seen.  Except... at the old castle.  Where Princess Sweetpea lives with her pump.  

As you enter the old, broken down door you hear a CrEeKing sound and see a flickering light.  The orange light is coming from within.... a PUMPKIN!  


By the wavering candle light sits a dark haired woman.  Her eyes are heavy.  Her hair is stringy.  Her clothes are black and mismatched.  Her skin is pale.  By her side is a kitten... completely black... named Spooky.  

The woman has a devilish, determined look in her eyes as she moves her long fingernails over the keyboard.  Then suddenly, she hears a beep.  And she runs up the stairs to suck the blood from her sleeping child.  

Only this blood is not to drink... it is to test..... 

CURSES!  LOW AGAIN!

October has been a wild, crazy, and.... ScArY month for all of us in the DOC!  Check it out...

Meri of Our Diabetic Life wrote about all the things that she wants her fellow D Peeps to know.  She even talks about walking around like a Zombie with dried food on your shirt.  Scary AND gross!

Kerry of Singapore Life wrote about having her child around while trying to work and meet a deadline!  That's definitely scary!  Her post was also about UN Day at her son's school - an event that started off scary but ended up being wonderful!

Reyna of Beta Buddies wrote about Guilt.  The guilt of parenting the SIBLING of a Type 1 diabetic.  She talked about the her biggest regrets, her biggest struggles, and her biggest heartaches.  That's scary stuff.  

Heather of Sweet to the Soul wrote about sweet Eilish.  The death of a 13 year old child rocked our worlds this month.  I think we all had some sleepless nights due to this and the fear that it could happen to US and our sweet children might go to sleep and never wake up.  She tells us This Is Why...

Heidi of A Work in Progress wrote about BLUE SAND!  I think blue sand is kinda scary.  Imagine the mess of all that when it gets tracked into the house....  But Heidi has learned the secret of NOT being afraid of blue sand and how to cherish each day with our kiddos.  She even included a "must read" poem.

Laura of Houston We Have a Problem wrote about getting FLOCKED!  That sounds scary, doesn't it?  Imagine if you woke up and your yard was filled with BLUE FLAMINGOS?  Honestly, I'd be excited so you better read up to find out why and what to do if it happens to you!

Katie of Daily Glimpses of the Good Life wrote about how D SUCKS!  Check out all the scary stuff she talks about... having to go back to work, getting no sleep, the crazy costs of insurance and medical supplies, and the ramifications of life with D. That's enough to keep you up at night...

Jen of I am Your Pancreas wrote about a Test Strip S*&t Storm.  Now THAT sounds scary!  Although if no S*&t was involved, I think we'd all be outside with buckets to collect those precious little strips.  But here's the scariest part - who gets to decide how much is enough to test our kids?

Heidi of D-Taleswrote about living 1,095 days with D.  Scary stuff, friends.  They celebrated Jack's 3 year Diaversary.

Tracy of The Superhero and The Princess wrote about her 5 year wedding anniversary!  I guess that COULD be scary, depending on your view of marriage! 

Nicole of The We CARA Lot Blog wrote about her VICTORY getting a a consistent policy approved for dealing with children with chronic diseases - including T1D - in Canada!   The scary part here is that without Nicole and her friends, many kids could be in serious danger at school. And have been.  Way to go, Nic!
Wendy of Candy Hearts wrote about an epic low and her experience having to use glucagon.  That's super scary!

Rachel of Pumpsley and Me wrote about a sweet experience meeting a child with T1D!  This really isn't scary - and I can't think of a way to make it scary because it's just so darn cute!  However - head on over because she's got a pic on her post that just MIGHT scare you!

wrote about all KINDS of scary stuff... wearing a white t-shirt with no bra, having crazy hair, wearing mix matched shoes...but the scariest part was treating a low and sending your T1D kiddo to school on the bus.  And what might be the most absolutely terrifying part is that we know it could all happen to us...

wrote about her Walk to Cure Diabetes.  I was there so I know that this day was ALL FUN and not really scary at all.  However... check out her post because there's a pic on there that might scare you (hint.... it's ME- not her)! 

Donna of Sugar Kids wrote about how D can take over your life.  Scary and true.

And....
Kris of My Sugar Bugs wrote a great post for No D Day where she told an extremely scary story stressed the importance of car safety.

When I signed up for October's Blogger Basal, I thought it would be fun to do a "scary" edition of the basal.  Little did I know that this month would include our worst nightmare as parents of CWD's.  

The passing of Eilish from Dead in Bed Syndrome has touched us all.  Many of us wrote about it.  You can read my post HERE.  All of us felt it.  We all felt the heartache and fear that this horrible event brought with it.  

It reminded us that life with D is scary.  Not just in October - but always.  It reminded us that no one ever promises us another day.  It reminded us that our children are not guaranteed a long life.  

It really doesn't take much to make this a scary edition of the BB.

Because we all know that life with D is scary enough...

But this story has a happy ending... 

If you read through all the posts listed here you see a common thread.  Yes, some of them them are scary.  BUT... they ALL speak of making life with D work.  Of dealing with the scary stuff and moving on.  Of not giving up hope.  Of moving forward.  And most importantly, of not letting D win.  Not letting it take away who we are.  And not letting it rule or lives or ruin us.  Of LIVING.  



If we were all to dress up for Halloween, what should we be?  A pin cushion?  A Vampire?  A doctor?  A nurse?  Wonder Woman?  Super Man?  We don't really need to dress up at all... because we're all HEROES.  Plain clothes heroes - fighting the war against D.

The woman runs to the hall closet for a little box of potion.  It's a special potion.  It's magic.  She presses the straw to the lips of the sleeping child and urges, "drink, drink".  The child quickly slurps up all the magic potion without even waking up.  

The woman sits on the child's bed and watches her breathing.  It the sweetest sound in the world.  The sweet little lips slightly open.  The long eyelashes fluttering.  The little arms wrapped around a stuffed animal.  The smell of baby and child mixed together.  

The woman watches the clock tick tocking away.  Until it is time for more blood.  

She pierces her child again and draws the dark liquid from her tiny fingers.  She waits.  And then she sighs.  

A good number.  A number that is going up.  A number that means it is safe to sleep - at least for awhile.

Until the bell tolls.  And it's time for more blood.

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Saturday, October 30, 2010

Say BOO! to Diabetes

Happy Halloween!


We are eagerly awaiting Trick or Treat this evening!  
Yes, my child has diabetes and Yes, she DOES go trick or treating!

I am determined that diabetes will NOT take the fun from life.  And that includes Halloween.  

I was worried about it at first.  In fact, I remember thinking about it in the car on the way to the hospital the day she was diagnosed... "How in the world are we going to do Halloween?"  WHY I was worried about that, I don't know.  But your mind goes to weird places that day.

I shouldn't have worried.

Here is how we celebrate Halloween at our house....

We DO get costumes.  This year, Sweetpea is dressing up as a puppy.  She also dressed up like Cinderella for the Halloween party last night.  

 This is Sweetpea and me before the party...

We DO carve pumpkins!


We DO go Trick or Treating!  We go from house to house just like everyone  else!

What do we do with the loot?

The way we handle it is that Sweetpea does not eat candy during Trick or Treating.  I wouldn't let her do this even if she did not have D.  When she gets home, we sort through it.  We keep the Smarties and the Starburst (red only) for lows.  Sweetpea gets to choose a few things to keep - she like m&m's and Tootsie Rolls.  She can have one or two things that night.  The rest she "sells" to me.  I take it to school and put it into my prize box for the kiddos there.  She gets $$ and she can go to buy something.  

The kid really makes out on this deal... This year she got money from BOTH sets of Grandparents.  So add that to her Tick or Treat money and she's going to do well at Target!

There is no set amount we give her... This works for us right now.  We just let her pick a toy that isn't too expensive.  Say $10 - $20.  It's worth it to us to help her have fun celebrating this holiday.

I REALLY liked the idea of the "Switch Witch" that I read on another blog.  I think we may try that this year.  We will leave out the candy and during the night the "Switch Witch" comes and takes the candy and leave a toy in it's place!  LOVE THIS!

And really....  I think this would be a great idea even without D.  No kid needs to gorge on candy.  No adult does either.  Get it out of the house!  

So that's how we are celebrating... 

We will ENJOY this day!
We will PARTICIPATE in this day!
We will do the things that everyone else does - just with our own spin.

Diabetes will NOT win.  It will NOT take this away.  I won't let it.

Here's a little video I shot during pumpkin carving... 
Sweetpea asked me to video her.  And she just started talking about diabetes, so I thought I'd share!


I wish you all a very HAPPY HALLOWEEN and hope that you, too, say BOO to diabetes!


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Friday, October 29, 2010

Juvenation

I was all ready to post about Halloween... but then guess what?

I ALSO wanted to share with you that I'm guest blogging over at Juvenation today on the JDRF Advocacy Blog!
Click HERE to go on over and check it out!

I wrote a post for them about JDRF's Type 1 Talk event that is being held around the country to celebrate World Diabetes Day! The events are taking place on November 14th.

I'm hosting an event. You can, too. OR - you look for one to attend! It's easy peasy lemon squeezy. Click HERE to find out more about Type 1 Talk!

Looking for another way to celebrate WDD?  Head over to Nicole at The We Cara Lot Blog to check out some really awesome t-shirts!  We got them last year and think they are super cool!  Just like Nicole says... GET LOUD.  GET SEEN.  GET BLUE!

Look for my Halloween post tomorrow....

By waiting to post it until tomorrow I can treat you to some pics of us (me and Sweetpea, anyway- Daddy is anti-costume) in our Halloween costumes! Speaking of which... I gotta run! I've got to go get ready for our Halloween party tonight! My costume is like - totally rad (if I do say so myself!).  See you tomorrow!

ps... I've Halloween-ified my Playlist!  Enjoy!

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Wednesday, October 27, 2010

In the Buff - The Naked Pancreas Project

 Reyna over at Beta Buddies started this naked meme... and since Sweetpea is often a "clothing optional" kind of gal, I knew I had to chime in!  It totally cracks me up!  She will be playing around the house and the next thing you know she's in her play heels and her pump pouch - and that's it!  Sometimes she will add a sparkly necklace... or a crown... accessories make the outfit, you know.  

Anyway... here is everything you wanted to know about us!
But I warn you.... we're kinda boring.  No special bolus tricks.  No thousands of ratios or rates.  We're kinda vanilla.  With a sprinkle or two.

Too make this naked expose more exciting, I'll add some "fun" pics at the end!  Now don't go scrolling down right away.  Patience is a virtue, you know!

1. What kind on insulin management mode do you use? 

Sweet Pea has a pink Animas Ping insulin pump and a Dexcom CGM.

2. How often do you inject/change pump sites? 

We change sites every 3 or 4 days.  Usually a 3 day and then a 4 day.

3. What type (s) of insulin do you use? 

Sweetpea runs on Novalog!

4. What are your basal settings ?  

3 am - .125
9pm - .225
I know - crazy!  We had around 5 or 6 going for awhile.  Then things got crazy and our Endo suggested that we do this to see more clearly where we need to fix things.  And... it worked.  It worked so well that we haven't changed anything.  We might need to pull back around 3 am for a few hours and then go up around 7am because she's been close to low a lot in the early am hours this week.  We'll see...


5. What are your correction factors ?

1:150 during the day
1:500 at night

Yes, 500.  We had it on 300 for the longest time but she would ALWAYS go low jif we corrected.  She would drop and not stop dropping.  So we started doing half of what it suggested and that seemed to work.  Then we just decided to officially up it.  Crazy, huh?

6. What are your meal ratios ?
Breakfast = 1:22
Lunch = 1:30
Dinner = 1:40

There are times associated with these but I don't know them exactly off the top of my head!

7. What do you do for activity and/or PE?

Nothing.  She does not consistently fall during activity.  I thought we might have some issues this year because she is running more outside and during PE - but no.  We usually just monitor her while she's playing.  Dexie helps a lot with this.  If she's crashing, we'll try to stop the fall with a well timed Hershey Kiss.  But she doesn't always fall during activity.  So... we don't have rule.  We have to treat each situation differently.


8. How do you manage Pizza, Macaroni and Cheese, or any other "difficult to manage" foods? 

 Hmmm.....  We don't?  Maybe because she's so small (She's 4 but she weighs 34 pounds) she doesnt eat enough to make it really affect her.  Pizza doesnt usually give us problems - but then she eats maybe 2-3 square sized pieces.  She DOES like Papa John's and it HAS caused awful bg's.  So.... we just don't get that kind.  We choose the less doughy options!  Mac and Cheese - doesnt seem to give us a problem.  Again - she rarely eats much.  But no issues.  Now marshmallows - those are awful and we just stay away from them.  But that's a heck of a lot easier to do since they are a treat food and not something people eat as a meal.


9. How do you prefer to manage your logs/data? 

We record everything in our little blue book that we got in the hospital.  They keep us stocked up with those.  It's small - check book sized.  We write her bg, carbs, total units, time, etc.  I also scratch little notes into the margins.  It works for us.  It's not pretty - but it does the job!  We also download data from her pump and from Dexie.  

I'm adding one of my own..... 
10.  What's your A1c?

April 2009 - Diagnosis:  12.5
May 2009 - 10.2
August 2009 - 8.5
November 2009 - 7.9
March 2010 - 8.0
June 2010 - 7.6
September 2010 - 7.5

I'm proud of these numbers.  We work our bums off to get here.  And she's right where she should be for her age - between 7 and 8.  Would I like to be in the lower 7's?  Yes.  But only safely.  Not too many lows.

And now for the "naked" pictures...

 A few months old...
The girl has always loved her shoes!
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Sunday, October 24, 2010

The Lions - Hear Us Roar

I was invited to speak at a local Lions meeting.  Tomorrow is the day.

The Lions club has long been known for their involvement with eyesight and providing glasses to those in need.  Many groups are getting involved with JDRF and working to help us fight diabetes.

We welcome their support!

I am only speaking for 20 minutes.  How in the world can I convey to them everything I need to in 20 minutes?  It's just not enough time.  To explain what diabetes is.  What's it's like.  What it does.  

But I'm going to try. (I'm SURE it's way too long...)

Here's my message...


Our journey with Type 1 diabetes began on April 27, 2009.  The previous winter, Sweetpea was sick with everything you can imagine.  Stomach flu, strep throat, scarlet fever, and a weird "virus" that caused her white count to hit the roof.  

Around Spring Break is when we started noticing symptoms.  Sweetpea was soaking through her diaper at night.  She had NEVER done this before.  She was drinking more than usual.  We went to Florida for Spring Break and the clothes we got her to wear there were way too big.  But they had fit when we bought them.  

I remember sitting on the couch down there and asking, "Should I be worried about diabetes?"

I knew.  I had a feeling.  We kept looking up symptoms of diabetes online.  She had some but not all.  So we kept explaining away the symptoms like so many people do.  

April 25th was the first warm day of the year.  We decided to make a special day of it and go to the zoo.  We stopped at Tim Horton's to get donuts and orange juice.  Later, I would kick myself.  We could not have served her a worse breakfast.  Our time at the zoo was miserable.  She was grouchy.  Uncooperative.  She wouldnt walk.  She cried.  She said she was hungry and then wouldnt eat.  Later that night, she threw up.


She had no fever, so we thought it might be the heat.  But I had a sinking feeling it was more.


The next day we went to the park.  Sweetpea wouldn't play.  We carried her around until she said that she just wanted to go home.  She was extremely lethargic.  That night J and I went to our bible study and Mom and Dad watcher her.  Mom called soon after we left and said that something was not right and we needed to come home.  


We got home and Sweetpea was in her crib.  She was rolling around and moaning in pain.  She had been really thirsty and downed a couple of glasses of orange juice.  Soon, she threw up.  This was just the excuse we needed to take her to the doctor.


At the doctor the next day, they weighed her.  She was 25 pounds.  She had been 28 pounds at her well check a few weeks earlier.  I felt my heart drop into my stomach.  I knew that this was not good.


I explained my concerns.  The doctor thought it was the flu.  I expressed concern about her weight loss.  He thought it was due to the throwing up.  I pushed harder.  He said he didn't think it was diabetes.  She "looked too good" but it was an easy test and they could get the answer right away.


The nurse came in and pricked her toe.  Sweetpea cried and cried.  A few minutes passed and the nurse came back in and said there was a problem with the machine and they needed to do it again.  I knew then.  They pricked another toe.  She cried even harder.  


Then the doctor came back in and told us that our daughter, our child who had just turned 3 years old, had diabetes.  We would need to pack a bag and get to the hospital right away.


We spend a week in the hospital getting her stabalized.  Sweetpea was in DKA (diabetic ketoacidosis) - a life threatening condition.  In the hospital, they taught us how to care for her and keep her alive.


Type 1 diabetes occurs when the body's immune system attacks and destroys beta cells in the pancreas. Beta cells normally produce insulin, a hormone that helps the body move the glucose contained in food into cells throughout the body, which use it for energy. But when the beta cells are destroyed, no insulin can be produced, and the glucose stays in the blood instead, where it can cause serious damage to all the organ systems of the body. 

For this reason, people with type 1 diabetes must take insulin in order to stay alive. This means undergoing multiple injections daily, or having insulin delivered through an insulin pump, and testing their blood sugar by pricking their fingers for blood many times a day. People with diabetes must also carefully balance their food intake and their exercise to regulate their blood sugar levels, in an attempt to avoid hypoglycemic (low blood sugar) and hyperglycemic (high blood sugar) reactions, which can be life threatening. 

While insulin allows a person with type 1 diabetes to stay alive, it does not cure the disease, nor does it prevent the development of serious complications, which can be many and varied. High blood sugar levels eventually damage blood vessels, nerves, and organ systems in the body. Among the potential complications of type 1 diabetes are: 
*  Cardiovascular Disease
*  Kidney Disease
*  Nerve Damage
*  Amputations
*  Blindness
*  Retinopathy
*  and a life expectancy that is around 10 years shorter than the average person




40 children are diagnosed with Type 1 every day in the US. 

After leaving the hospital, Sweetpea was on MDI therapy - or multiple daily injections.  She had 5 shots a day.  Every day.  For 6 months.  If she wanted to eat between meals, she had to get another shot.  This was a horrific experience for all of us.  She would fight, kick, scream, and beg us not to hurt her with each and every shot.


Finally, we got an insulin pump.  Sweetpea wears an insulin pump in a little pouch that she wears around her waist.  The pump has the insulin in it.  The insulin travels through a tube that is connected to a "site" where a thin cannula has been inserted under her skin.  The insulin travels through this and into her body.  She receives a basal rate of insulin all day long.  Then, when she eats, she get more insulin for food.  She wears her pump 24 hours a day - only taking if off for baths.  We change her site every 3 days.


In order to know how much insulin she needs, we count every single carbohydrate that she eats.  We then do a mathematical formula to determine her dose.  


We also check her blood sugar around 10 times a day - including at least once or twice a night.  No, we have not slept in year and a half!  Her poor little fingers always look dirty.  But it's not dirt.  It's hundreds of tiny holes.  If her blood sugar is too high, she gets extra insulin to bring it down.  If it is too low, she needs fast acting sugar - like juice - to bring it up.  High blood sugar can result in complications over time or in DKA.  Low blood sugar is more immediately dangerous.  A low blood sugar can result in a seizure, passing out, coma or death.

People with Type 1 can eat candy and sweets.  They just have to take enough insulin to cover it.  They can play sports.  They can have children.  They can lead very active and healthy lives.  It's just not easy. 


People with Type 1 can not control the disease through diet alone.  They MUST inject insulin.  Although people with Type 2 diabetes can take a pill, Type 1's can not.


There is no cure for Type 1.  She will not grow out of it.  No one know what causes it.  


We DO know, however, that it is not caused by eating too much sugar.  Or by obesity. 


Regardless of what the media says.  Saturdays paper had an article about diabetes that listed the ONLY risk factor for type 1 as obesity.  THIS IS NOT TRUE.


And this could possibly be one of the most frustrating aspects of this disease.  The majority of the population does not understand Type 1.  They think that our kids ate too much sugar.  They think that we caused it.  They think that it's easily controlled.  They think it's no big deal.


It IS a big deal.


People always ask me how Sweetpea is doing and if her diabetes is under control.  I don't know how to answer that.


Because EVERYTHING affects blood sugar.  Excitement.  Fear.  Nerves.  A growth spurt.  Illness.  Exercise.


We do everything we are supposed to do - and more.  We are constantly changing ratios and basal rates.  We are constantly tweaking something.  And Sweetpea still battles low and high blood sugar on a daily basis.  


I learned early on that you can MANAGE diabetes.  But you can never control it.  Control is just an illusion.


Our kids don't LOOK sick.  But don't be fooled.  Diabetes is always there.  Silently wreaking havoc in their little bodies.

We may get a few good days.  But then something happens and we need to make changes again.  We can never relax.  Because lows and highs happen - with no warning.  


The diabetes community was rocked last week with the news that a 13 year old girl had lost her life to this disease.  She went to bed healthy.  And she didn't wake up.  Hers was the fifth death this year from Dead in Bed Syndrome.  It's described as when a healthy person goes to sleep and is found in an undisturbed bed in the morning and their is no known cause of death.  

No child should be afraid to go to sleep because they fear not waking up.
No child should endure the endless injections, finger pricks, site changes, and hospital visits that diabetes requires.
No child should be forced to sit and watch their friends play while they are sidelined with a high - or low - blood sugar.
No parent should stare their child's mortality in the face on a daily basis.

This why we need a cure.  This is why we so desperately need your support.  

I'll end by sharing with you a quote from the Diabetes Research Institute's Tom Karlya (only changing it to reflect US).

"A year and half ago, Sweetpea was diagnosed with diabetes. I have 2 choices: To tell you that Sweetpea lives with DIABETES; or to tell you Sweetpea LIVES with diabetes. I choose the latter. She is an amazing child to whom the words 'no' and 'can't' do not exist. My promise remains, Baby, I'll stop when you have that luxury---and not 1 minute before. ♥."



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Saturday, October 23, 2010

Moving Forward

Tonight we had dinner at Chick-fil-A.  They had the a/c on and it was REALLY cold!  Sweetpea was sitting on my lap and letting me snuggle her.  As we sat there, I sang her a song that I used to sing her when she was a baby.  

You are my sunshine.
My only sunshine.
You make me happy
when skies are gray.
You'll never know dear.
How much I love you.
Please don't take my sunshine away.


Tonight those lyrics had a new meaning for me.


Tonight I want to share with you a few songs that I've found and really like.
The lyrics speak to me.


So tonight, instead of ME talking.  I'm going to let the lyrics do the talking.


Take from it what you will.  
Hope.
Peace.
Comfort.
Encouragement.


I let these songs build me up and make me stronger.


And I MUST get stronger.  Because there is a battle going on.  A battle I can't afford to lose.  A battle that requires all of my strength. 


Tomorrow I will fight.  Educate.  Advocate.  
Today I listen.  And regroup.


Enjoy.

Amy Grant - Better Than a Hallelujah



I LOVE these lyrics....

We pour out our miseries.
God just hears a melody.
Beautiful the mess we are.
The honest cries of a breaking heart.
Better than a hallelujah.

Casting Crowns - If We've Ever Needed You
(This song is from their new album, Until the Whole World Hears.  I thought that was an appropriate title!)
 



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Thursday, October 21, 2010

The Morning After

12:45 am  

I go check on my sleeping beauty one more time.  She's 220.  Tonight this sounds like a good number.  I'm so tired.  Yet I can't seem to fall asleep.  It's not my night to check her.  I'm not "on call" tonight.  That duty falls to J.  I resist the urge to snuggle up in her bed.

3:00 am

I awake.  I listen to the sounds of sweet breath coming through the baby monitor.  She's alive.  She's breathing.  She's ok.  I fall back to sleep.

5:00 am

Coughing.  Sweetpea is coughing.  


6:00 am


J is leaving for work.  Sweetpea is awake.  She gets in bed with me.  She is excited for her field trip to the pumpkin patch.  I feel her little feet press against me.  We both fall back to sleep.


6:30 am


Dexie is beeping.  She's low.  There is no juice upstairs.  I stumble down the stairs to find some.  A few sips is all it takes.  I'm glad she's with me.  We snuggle up and go to sleep.


7:00 am


We start our day.  


Today, Sweetpea and I had a special day.  Today we went on her field trip to the pumpkin patch.  We stopped for donuts on our way - a very rare and special treat for sure!  We enjoyed the sunshine, the beautiful leaves and the crisp, fall air.  It was a fun day!  A day for living!





Today, I see clearly the need to LIVE each day.  To be grateful for the opportunities we've been given.  And yes, even the challenges.

Today I know that I can not let fear hold me back.  I can not let fear dictate my life.  Or Sweetpea's life.  I must let her live.  


I can't let D win.


Today I feel even more passionate about the need for a CURE.  An honest to God CURE.  I feel more passionate about advocating.  About educating.  About making sure that people know that harsh reality of life that is Type 1 diabetes.


I've started walking again.  I haven't really exercised since diagnosis.  It's hard to find time.  And then I'm too tired when I do have time.  But recently, I've felt the need to walk.  The need to move.  I think I could walk and walk.  I feel like I could keep putting one foot in front of the other and just run away.


Not run away from my life.  Certainly not run away from my family.  It's more that I could run away from my mind.  From the sadness.  The anger.  The fear.


It's like I know I'm on the edge of a cliff and I know that if I don't keep moving, I'll fall.  


I can't fall.  I can't afford to get bogged down in the emotions.  I can't let it hold me back.  


It reminds me of this song.  Yes, we've watched Camp Rock WAY too many times.  But it's so true.  Pause the playlist and take a listen...




Don't close your eyes
We're all in this together
Wherever we draw the line
We're not gonna straddle across it
Or lose it

We can't back down
There's too much at stake
This is serious
Don't walk away
We can't pretend it's not happening
In our own backyard
Our own home plate
 We've been called out
Do you hear your name?
I'm not confused
Let's win this thing
We can't back down
There's too much at stake
Don't walk away
Today I know with even more certainty that we can't back down.  We can't walk away.  We most certainly have been called out.  

Now let's win this thing. 



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Sweet Dreams

I just put Sweetpea to bed.  I laid with her until she fell asleep.  And then I stayed longer... just watching her.

It took all of my will to get up and leave her - sleeping there so peacefully in her own bed.


Why?

Because Facebook was abuzz today with the news that yet another child passed away in the night from Type 1 Diabetes.

She was 13 years old.

No one knows why this happens.  The best answer we get is "Dead in Bed Syndrome".  Click HERE to read more about it.  But the basic description from the CWD site is this: 
Someone with type 1 diabetes is found dead in the morning in an undisturbed bed after having been observed in apparently good health the day before. No cause of death can be established. This is the typical situation of the "dead in bed" syndrome, a very tragic outcome which leaves the family with many unanswered questions: Why, when, how, could it have been avoided?

I could think of nothing else all day.  

All day I had this constant dialogue with God.  Which mostly just me, saying over and over again, "Please, God.  Please don't take my baby.  Please.  I know a cure will come in Your time.  But please hurry.  Please."

Other than that, I felt numb.

Until tonight.

Until I was laying in bed with my precious girl, talking with her before she went to sleep.  Talking about her field trip tomorrow and what kind of birthday party she wants (her birthday is not until March - but she is planning ahead!).

Then the tears started to flow freely.  Onto her pillowpet and her fairy sheets.  Onto the bloodstains that remind me that the same enemy that took this other young girl, lurks inside of my baby as well.  Knowing that there is a mother who is not tucking her girl in tonight.  


Because of diabetes.


This is why we walk.  Why we raise money.  Why I spend countless hours blogging, educating, advocating... Why I said "yes" when JDRF Advocacy came knocking.  


This is why we don't sleep through the night.  Why we are always tired.  Why we live in a constant state of stress and fear and anxiety.  Why our personal needs come last.  




 I have more to say on this topic.  But now I have nothing left to offer up.  I have nothing to share except raw emotion.  Sadness.  Pain.  Sorrow.  Guilt.  Fear.  


Right now, I'm just so thankful to have my little girl.  Alive.  Breathing. 

Tonight I count my blessings.  And I say prayers for the families who are dealing with my worst nightmare.


Tonight I will check on my girl a few extra times.  I will hug her tighter.  And I just may sleep among the fairies.  




** To read other posts on this subject, see the links below.


Our Diabetic Life:  Strengthening Our Armor
Beta Buddies:  The Hidden Truth
Sweet to the Soul:  This is Why
My Sugar Bugs:  Why We Need a Cure


 
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Tuesday, October 19, 2010

Fine

I meant to write this post during Invisible Illness week... But for a disease that's "invisible", it sure does demand a lot of time and attention.

No matter. Here we are. And it's still as true as it was back then.

How many times since diagnosis has someone approached you to tell you a story about { enter name here } who has diabetes?

It seems like EVERYONE knows someone. It's someone in their child's class. A boy on the soccer team A girl at church. A friend of a friend. Their cousin. Their Grandma.

And the story usually ends with "and he/she is doing JUST FINE!"

First, let me say that it is so nice of people to want to make that connection with you. It's so nice that people care enough to tell you their story. They just want to help. They don't know what to say. I get that.

And I smile and nod and say, "That's great!".

And I mean it.

But I can't help but think....

Fine.

I want to scream, "Do you know what it takes to look to the outside world like you're "doing just fine"?"

It's endless counting or every carbohydrate that is consumed - or is being considered for consumption.  And sometimes counting a meal multiple times because the numbers all run together after a while.
It's test strips.  LOTS of test strips.  

It's blood stains on pillows and sheets.

It's juice boxes and candy hidden all over the house and the car.
It's knowing how to use a syringe.

It's knowing how to argue with the pharmacy.  Or the insurance company.  Or the school.  Or the ignorant person you encounter.

It's sleepless nights.  Lots of sleepless nights.

It's worry.

It's fear.

It's logging numbers.

It's looking for patterns in crazy numbers.

It's taking a gamble with an insulin dose.  Which is really taking a gamble with your child's health. 

It's saying no when you really wish you could say yes.  To the treat.  To playing with friends.  To the sleepover.

It's tagging along because no one else knows how to care for diabetes.

It's writing health plans.  

It's giving special instructions.

It's being different.

It's knowing your way around the hospital.

It's getting good at injecting your child or inserting needles into his or her skin.

It's getting used to the sight of blood.

It's all this and so much more...

The outside world doesn't know what it takes to look "fine".  

It's so frustrating.  I WANT people to know all that we do.  All that we HAVE to do to keep our kids alive.


Not because I think we deserve special treatment or a medal or something.


But because I'm sick and tired of people hearing "diabetes" and thinking "no big deal".


Thinking that she'll grow out of it.


Thinking that she ate too much sugar.


Thinking that it's easily controlled.


Thinking that it's NOT a life threatening disease.


I want them to know the truth.

I had a conversation the other day with colleague.  I was in the office faxing Sweetpea's latest numbers to the hospital.  We'd been battling highs and lows due to illness for days and we were getting no where with the changes that we'd made.  I needed back up!  I'd been up too many times the night before.  I was tired.  It was Friday.  The end of a long, long week.  I'd already corrected a blood sugar.  Gave insulin.  Recorded the wonky numbers.  I had things to do.  Lots to get done and accomplished.  But there I was, faxing.  And the fax wouldn't work.  So I had to stand there longer to try it again.  And every minute counts at school.  Every minute.  I don't like wasting them.  

I sighed.  Mostly to myself.  Just tired.  Tired physically.  Tired emotionally.  And I said, again mostly to myself, "taking care of my child is a full time job".


And my co-worker said, "You make it look easy.  No one would know all that you do."


And she's right.


No one knows.  All that we do is largely invisible.


And while I wish people understood what Type 1 truly is....


Isn't that what we're going for?


Don't we want our kids to be like everyone else?


Don't we want them to look so healthy that no one knows they have a chronic disease?


Don't we want them to be so happy and well adjusted that no one would guess that they make themselves bleed countless times a day?  Every day?


Don't we want them to be so active and involved that people would be surprised that they wear an insulin pump?


I think so.  


I think it's our goal.  


That diabetes won't hold our little fighters back.  


Could it be that diabetes is largely "invisible" because we do such amazing job?


We don't give ourselves enough credit.  We all are hard on ourselves.  We strive for good numbers and low A1c's.... We don't get a break for growth spurts or illnesses.  We feel failure every time we see a certain number staring back at us.  And we hide that emotion for fear of transferring it to our kids.  


It's hard to be a pancreas.  No, it's impossible.  It's not a job that we can ever do perfectly.  Although we think perfection is the standard.  


 So...
Maybe... when people tell us about someone that is "doing fine"....
Maybe we should still smile and say, "That's great!"  
Maybe we should take it as a compliment when people assume it's easy to control.
Maybe we should smile to ourselves because we know the "secret".    


That our kids are strong.  They are tough.  They are fighters.  


And so are we - their parents.  The people who love them.  

And then... maybe we should tell them the truth about diabetes.  Because really - don't we want it both ways?



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Sunday, October 17, 2010

Happy SWEETest Day!

Did you know that yesterday was Sweetest Day?

Do you even know what Sweetest Day is?!?

I know that not everyone in the country celebrates this day. It's kinda like Valentine's Day. But with less hoopla.

I have two VERY SWEET people that I share life with each and every day! 
Sweetpea and her Daddy!


How did WE celebrate?

Well, J and I got to go out for a rare dinner alone. Ahhhhh!

Then we went to the mall and did a little shoe shopping! Can the night get any better?!?

And then.... well, then we decided to add a member to our family!

Meet Spooky!

I'm learning it's really hard to get a good picture of a cat that is ALL BLACK!  But he's cute!  Trust me!

Spooky is Sweetpea's kitten! He is a 12 week old kitten who is an absolute doll! He purrs so loudly when you enter the room that you think a motor is running somewhere. He's is very playful and loves to chase the feather on a stick that we got him!

We adopted him from the Humane Society. We had been looking for the right one and I think we found him! I've always wanted a black cat... and he is just beautiful! He's laying his head on my arm while I type!

We are taking some time to get used to one another. We have yet to introduce him to our other cat, Oliver. In time.... Right now they are living in separate quarters and share visitation to the rest of the house. Sweetpea is a little jumpy around Spook. Oliver tends to nip and bite so she is not used to a kitten who does not do those things.

I've had Oliver since he was 6 weeks old. It was just me and him for awhile. Then we added a family and moved 3 times. He took it all in stride... until Avery was born. He loves her - that's not the problem. He just turned into an attack cat. When people come over to the house, he hisses. He does NOT go hide. He makes his presence known and you better not mess with his girl. He HATES small children (other than his). If someone rings the doorbell, he will jump up and try to look out the window - while hissing and meowing. Very protective. I'm glad we have an alarm - but he'd probably do just as well at keeping burgalers away! He loves us, though. Well - me. He follows me around and meets me at the door. He curls up in my lap as soon as I sit down. He is MY cat. No mistake about that.

Sweetpea wanted her own. So....

We're hoping that Spooky is more mellow and that they get along well!

It would also be AWESOME if Spooky could learn to alert to low blood sugar. I'm just sayin'

And if this weekend could get any better.... check out this!


This what Dexie greeted us with on Saturday morning! We have been battling strep and a cold which has made for some wonky blood sugars. Remember that Chick-fil-A night I told you about? Yeah, she was 508, kicking and screaming and begging not to go. It's about time we see some good bg's! She does seem to be feeling better, though. She was playing doctor this morning and asked if I was sick. I said yes. She wanted to know if it was my pancreas!

Don't feel bad if you missed Sweetest Day! You can celebrate by heading over to The Superhero and The Princess for this week's give away! She's got some SUPER SWEET stuff that she's giving away this week!

.



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