Life for a Child

Monday, February 24, 2014

Growing Pains

She's getting older.

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

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

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

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

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

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

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

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

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

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

Of course, with that comes new problems and worries.

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

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

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

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

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

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

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

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

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



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

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

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

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

I'm a little sick just thinking about it.

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

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

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

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

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

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

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

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

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

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


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Wednesday, February 19, 2014

At Least It's Not...

**This post was originally written about a year ago.  I was just talking about this issue with some local D Mamas and thought... I still feel this way.  Maybe you do, too...**

A few weeks ago we took Sweets to the doctor to check in after her "episode" with the blood draw.  We were concerned about her reaction and the fact that she displayed seizure-like actions.  (You can read more about that here.)

We were sitting in the waiting room when a new mom came in with her baby and approached the check in window.  This was obviously one of her first appointments.  She stood at the check in window and talked to the receptionist. I couldn't help but overhear.

She was telling the receptionist about how tired she was and how glad she was that she had some reinforcements coming soon so she could get some rest.  You could tell by the way she said it that she wasn't THAT upset.  You know... it was kind of a right of passage thing.  You could see and hear her excitement about having a new baby!

I remember that feeling.  It made me laugh, though.  Because I was thinking, "Lady.... You don't know tired!"

I posted that little thought on facebook later and it got quite a lot of comments from other D Mamas about the whole issue of sleep and lack thereof.  But one of the comments was from a girl I went to high school with.  She posted something to the effect that she can't imagine what it's like to raise a child with diabetes but that we should all be so glad that it's not something worse like cancer and that we should quit whining and be grateful because there are other mothers out there that could say the same about us.



I didn't respond at the time because, frankly, I was just too tired to get into it and I did not want to turn it into a debate.  This girl does not know me now nor has she ever met Sweets.  She just doesn't get it.

But...  I'm responding now.

First of all, I wasn't being disrespectful to this new mom.  Truly, I wasn't.  You could tell she was excited to have a new baby and be part of that "club".  My response to her was a lot like the way people who have already had children respond when you discuss your birth plan for your first child.  Or when you, before kids, talk to an experienced Mom about how your kid will NEVER do/act/say something like THAT.  It's that smile and nod while saying in your head, "HA!  Just you wait....!"

Funny story on this...  Sweets was really a great baby.  In the hospital she slept A LOT.  She never cried.  The first night home, I was talking to a friend and when we hung up she said, "Good Luck.  Call if you need me."  I thought that was odd.... why would I need luck?!?  Jason wanted to set the alarm so we wouldn't miss her feedings.  See?  You're laughing aren't you?!?  We were so naive.  She screamed all night long.

So - I've been there.  I know what it's like to have a newborn and be up throughout the night doing feedings.  I know what it's like to worry about SIDS and every other crazy thing new parents freak out about.  And let me just say, it doesn't even compare to life with diabetes.  The exhaustion and lack of sleep is so much worse.  We are going on FOUR YEARS.  And there is not really an end in sight.  (Other than college?!?)  And the fear of losing her in the middle of the night....  it's always there.  It never ends either.

The other thing that really bugs me about statements like that is this...

I want to say...

Do you think that I do not give thanks every. single. day. that I have a healthy child?  I know our children are not guaranteed good health.  Don't think for a minute that I'm not grateful that I have a child that can run and play and laugh.  A child who can read and go to school and make friends.  A child who can hide her disease if she so chooses.  Trust me.  I don't take it for granted.

It makes me think of this quote...



Truth.

Just because someone has it worse does not mean we are not allowed to feel sad.

And there's a lot outsiders don't know about this disease.

Before you make a statement like that...  Go spend a day in our shoes.

Count all the carbohydrates your child consumes in a day.  Prick their fingers 10 or more times a day.  Calculate how much insulin they need for food and don't forget to take into account the activity they will do later.  Or have done before.  Don't forget to mix their food between fat and protein and carbs.  Just the right amount.  But don't be surprised if today's reaction is totally different from yesterday.  Go with your child on playdates.  Know you can't leave them alone because they can't take 100% control of this disease and the other parent doesn't know what to do.  Know the other people who know how to take care of your child... well, you could count them on less than one hand.  Don't forget to review numbers to see if basal rates need changed.  Are they growing?  That could be messing things up.  Or getting sick?  Or nervous?  Maybe it's hormones.  Or if they are running low.... hope it's not the stomach flu.  You know a simple illness or tummy bug can send you to the ER, right?   Don't forget to order supplies.  And fight with insurance to give you what you need.  And find a place for it all - because you'll need a BIG space.  Your little medicine cabinet isn't going to cut it.  Hope you have good insurance.  It's expensive.  Make sure you keep up to date on the latest research and products.  And don't forget your visit to the hospital every three months.  And get the blood work done.  And don't forget about the other diseases your child is more likely to develop.  Make sure you comfort your child when he feels different from all his friends.  Or when she's crying because someone made fun of her for her pump.  Or when he's begging you not to give him a shot or change his site and pleading you to stop hurting him.  Make sure you communicate with the school nurse.  IF you have one.  YOU may have to go to school every day to give insulin.  And Lord help you with birthday treats.  And parties.  And sleepovers.  And sports.  You know it's more difficult, right?  Make sure the kit is full and you always have juice on hand.  Remember to bolus before they eat... but not too early.  And then make sure they eat it all.  Otherwise they will be low.  Keep working to achieve a steady blood sugar.  You don't want spikes.  Or a too high number.  Or too low.  Make sure you have the glucagon and know how to use it. You don't want your child to have a seizure and you not be ready.  And make sure she isn't too high for too long.  You better check ketones.  If she's in DKA you have to go to the ER.  Push the fluid.  Try not to worry about what blood sugar is doing to her body.  Don't think about it destroying her blood vessels.  Wreaking havoc on every single organ in her body.  Try not to worry about it affecting the blood vessels in her eyes or that it could rob her of her vision.  And don't forget to go to the eye doctor every year.  Don't think about how it can cause never damage and end in amputations.  Oh - and don't get upset when someone tells you that you shouldn't have fed your child so much sugar.  Or that you can cure the disease with cinnamon.  Or a special diet.  Don't forget to set your alarm to check at night.  I mean, if your child went low and died and you would never forgive yourself.  It can happen.  Try not to let that fear rule your life.  Make sure you stay up if he's low to test again in 15 minutes.  Make sure you wake up to retest if he's high and you give insulin.  Oh - and make sure you can make decisions in the middle of the night.  Try not to freak out if things aren't going as planned.  And remember that YOU are the one responsible for informing her teacher of what she needs to know about diabetes.  Make sure you have plans in place at school.  You're gonna need to be in charge of that, too.  Oh- and one more thing... don't forget to make sure your child feels as normal as possible.

They don't get it, do they?

They can't KNOW.  Not unless they live it.  And we'd never wish it on anyone.

Are we glad it's not cancer?  Are we glad it's not "something worse"?  Of course we are.

We stare death in the face every day.  We know we are not promised another day.  We don't ever take it for granted. We know better than most how lucky we are to have our children healthy and happy.  It takes a lot of work to make sure that they ARE healthy and happy.  Don't treat us like this disease is no big deal.

We have every right to feel sad.  Or mad.  Or overwhelmed.  Or grief stricken.  Or happy.  Or TIRED!

We are allowed to feel however we feel.

And if we don't let ourselves FEEL... feel the bad with the good.  The sad with the happy.  The overwhelmed with grateful.  The grief with the joy...  The dark will overtake our light.

There's a saying that you can't know joy until you experience pain.  You need both.  Your joy is not as joyful if you've never experienced the sting of pain.

It's like that.

There's a lot of darkness in the disease.

I think we have to acknowledge that darkness in order to live in the light.

Acknowledging that darkness doesn't mean we think we have it so much worse than anyone else in the world.

Acknowledging that darkness makes us MORE grateful.  More thankful.  More happy.  More joyful.
More able to focus on living in the Light.  The Happy.  The joy.  The LOVE.

Because that's what it's all about.

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Sunday, February 9, 2014

Life, Marshmallows, and Valentine's Day

Valentine's Day is right around the corner.

Maybe you're like me... and still frantically trying to come up with the perfect gift.  Maybe you're like my husband, who rocks at this stuff and is already done and smugly smiling about it.  Maybe you've just given up on gifts.  Or Valentine's Day in general.

Whoever you are... Whether you have a "Valentine" or not... This is for you.

I have two Valentines.  My wonderful hubby, of course.  But also my extra sweet little girl.  Sweets loves all things red and pink and hearts.  She was made for Valentine's Day!  She wears her Valentine outfits year round.  She looks forward to all the little cards she will get.  And she changes her mind countless times about what she wants to give out!

With an nickname like "Sweets", how could she NOT love Valentine's Day?

But, you know that there's more to that name than her love for sweet things and hearts and pink.

It's because she actually IS sweeter than most.  Her sweetness is in her blood.

We were working on her Valentine's today and she was putting marshmallows into baggies for her "Do you want to build a Snowman?" Frozen themed cards.

(I found the topper on ETSY.  Go here to get your own!)

And she wanted a marshmallow!  Hello, SUGAR!!

So she had one.  And we bloused.  And life was good.

But I had to think... We are so lucky.  Yeah, it stinks that she can't just have a marshmallow while she's putting together her cards.  BUT... she's alive.  She's thriving.  She's happy.  She's healthy.

Did you know that lack of insulin is the most common cause of death for children with diabetes in many countries around the world?  In fact, the life expectancy for a child who has just developed diabetes could be less than a year.

That makes me ill.

So this Valentine's Day, let's do something about that.

This year, join with me and the rest of the DOC (Diabetes Online Community) in the "Spare a Rose, Save a Child" campaign.



The "Spare a Rose, Save a Child" campaign is simple.  You buy ONE less rose this Valentine's Day and donate that money to help save the life of a child living with diabetes.  Your Sweetie will still get some flowers and you will help save a life.

What's more rewarding than that?

One rose = One month of life
A dozen roses = One year of life

It's easy... just go to the link at the top of this blog to donate.

Your donations will go to the Life for a Child campaign.  This is an International Diabetes Federation program that provides life saving diabetes supplies, medication, and education that children in developing countries needs to stay alive.


This Valentine's Day, I'm not getting flowers.  My flowers are helping to provide care for a child with diabetes for an entire year.  That's worth so much more than a dozen roses.

Won't you join me?

Just one flower....

Because no sweet child should die due to lack of insulin.

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Tuesday, February 4, 2014

Dexcom G4: Pediatric Approval with a Familiar Face

Yesterday, the FDA approved the use of the Dexcom G4 Platinum continuous glucose monitor for use in children.  (You can read the press release here.)

HOLLA!

We have been using the Dexcom CGM for years.  We were lucky enough to begin just before the lableing was changed.  Even though our children's hospital stopped prescribing it for new patients, we were able to get our existing prescription renewed.  You can read about our experiences with it by going up to the tab above labeled Dexcom!  (I have more to add about the new G4... soon!)

I'm thrilled that other families with young children will finally have access to this technology!  It is a true life saver and game changer!

My love for Dexcom is large.  I could do without a pump before I could live without the cgm.  Sweets would probably disagree - but she does love her Dexie.  It makes her feel safe.

It makes us feel safe, too.

As you may remember, there's a good reason why I love our Dex so very much.  Sure, I love the arrows and the alerts and the information it gives us.  I love the charts and graphs.  I love that it makes it easier for her to safely go to tumbling... or cheerleading... or a friend's house... or school.  I love that I'm siting here writing this blog with Dex by my side... and Sweets is up in her room fast asleep.  I love that it helps her feel safe and more confident.  I love that it makes it easier for others to take care of her.

But mostly, I love it because it saved her life.

I'm not exaggerating here, folks.

It's true.

After that experience, I wrote Dexcom a letter.  You can read that letter here.

How could I not?  I had to tell them how much it meant to me.  That it wasn't just a product.  It wasn't just a job.  It's so much more than that to those of us that rely on it every day.

I emailed it to them.  And they read it.  They emailed me back.  And that was that.

Until about a year ago.  When they asked if I would be willing to let them use our story, of course I said yes!

So, you can see an excerpt of the above letter/post along with some pics of my girl on the Dexcom website.  Go check it out here!



We have had great success with our Dex.  It's crazy accurate.  Sweets says it doesn't hurt at all - absolutely no tears.  It has great range.  I could go on... but I'll save that for another blog!

I'm so excited for all those children and families that have not been able to get a prescription.  Now you can!  Call you endo tomorrow and see if it's something that could help you manage your child's diabetes.

And by the way... Dexcom didn't compensate us in any way to use our story.  And they didn't ask me write anything.  I just truly love them.  And truly love their product!

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Monday, February 3, 2014

Diabetes Art Day 2014

Today is Diabetes Art Day!  

Diabetes Art Day was created by the wonderful Lee Ann Thill.  On the Diabetes Art Day website, she describes it as this... "Diabetes Art Day is a web-based initiative for the Diabetes Online Community to “tell a story” about life with diabetes though creative visual expression. It’s a way for us to tell our stories so we can connect and share with each other and with our loved ones. It’s a way to generate diabetes awareness outside of the DOC by sharing artwork on Facebook, Twitter, blogs and community websites. Diabetes Art Day is for people young and old with any type of diabetes and their families, so children, spouses, parents, siblings, or anyone who is affected by diabetes can participate. For this one day, you’re encouraged to break out of your linguistic comfort zone, bust out some art materials, and make a piece of artwork – painting, drawing, collage, sculpture, an installation piece, a mixed media something or other, or whatever you can imagine. Whether you have lots of experience making art or none at all, Diabetes Art Day is for you to show the world what it’s like to live with diabetes in that “a picture is worth 1000 words” kind of way."

I really enjoy D Art day!  I love making art.  I'm probably more crafty than arty but I enjoy both.  Sweets loves creating things as well!  So I knew we would both enjoy a little project!

I had my inspiration.  Test Strips.

We bought some small canvases, dumped out our (used - gross, I know) test strips and got busy making some art!


Sweets decided to create a person out of her strips.  My idea was to do the LOVE thing.  I wanted the O to be blue.  I had blue glitter spray paint and we were going to spray paint the canvases and then remove the strips to leave our design.

Easy Peasy Lemon Squeezy!  Right?!?

WRONG.

Two words.  HOT MESS.



This did NOT come out how I envisioned it.

Sweets design worked well.  But mine... the strips would NOT stay in place.  They kept flying all over the place and it wasn't working.  I took the strips off the canvas and thought I would just leave it blue and glue the strips on.  But it was just a disaster.  I tried to spread out the paint... hoping for a cool effect of some kind.  All I got was a mess (see middle picture) and me looking like a Smurf with blue hands.

I was a MESS.  I ended up going to get the adhesive remover we use for sites to get the paint off of me because nothing else was working.  Not cool.

But then it hit me...

This is perfect.

It's JUST like life with diabetes.

It's never the way we envisioned it.  Rarely.  Our plans usually get turned upside down.

Diabetes is often a big mess.  It's not neat and precise.  It gets all over us and it's hard to get off.

But what are we going to do?  Sit and cry over it?

No way.

We pick ourselves up and figure out something else.  We keep trying.  Sure, we may say a few not so nice words along the way... but we keep going.

And in the end... what we get is pretty cool.  It may not be what we first envisioned.  And it may have been a struggle getting there.  But what we end up with just may be better than what we had planned anyway.

Here is Sweets finished design...


And here is mine...


The color in the pictures is off.  The background of hers is a lighter, sparkly blue.  She used markers to complete her design.

Mine is purple around the outside.  I pained A's hand pink.  It's hard to see but there is a little red heart shaped blood drop on her index finger.  I chose pink and purple because... #1 - It matches her room and they are her favorite colors.  #2 - I didn't have blue paint.  

Now for the symbolism... I love me some symbolism!

The little hand represents her little self.  She sometimes seems so grown up to me but she's only 7.  She's still my baby.  The five fingers represent five years (in April) of living with T1D.  And honestly, February was when her symptoms began.  There are 75 white dots around the outside.  Each dot represents 200 finger sticks.  That's 15,000 finger sticks.  That's her five year total (estimate).  At just over 8 tests a day.... we know that's probably on the low side.  

I added her name above the hand.  And I was considering adding her dx date... But, and this is a post for the future... I'm just not sure I want that in her face all the time.  We are working on the balance between living with and advocating for diabetes while not letting it become who we are.  

So, that's our 2014 D Art day submissions!  It's always a fun time!  I encourage you to make some D art and get creative!  Even if you make a big mess and turn yourself into a Smurf... it can still come out ok!  

Head on over to the gallery... and make sure you keep coming back... to see this year's gallery of work!


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