All Too Well

April 27, 2013

Saturday

Four years

Four years of living with diabetes.

The first anniversary felt like we were reaching a milestone.  The second we spent inpatient after a low blood sugar induced seizure the night before.  The third anniversary found me feeling strong.

The fourth?

I wasn't really able to fully answer that until today.  This year I feel like I just know this disease all too well.

Not that I UNDERSTAND this disease.  Just that I know the games it plays all too well.

Our "diaversary" tradition is to do something fun for Sweets to celebrate the day.  Different people have different feelings about acknowledging the day.  For us, it's a reason to celebrate!  It's a day where we can honor the Sweets for her bravery and courage.  It's a day where we can do something fun to acknowledge all the "un fun" things that diabetes brings into our lives.

This year we did it up BIG!

She wanted to make cookies to take to school to share with her class.  We didn't do that last year but she really wanted to so something special this year.  Who am I to say no to that?!?

But that wasn't the best part...

Sweets and I went Lexington with Misty from Life is Like a Box of Chocolates and her girls to see Taylor Swift LIVE IN CONCERT!  We spend the night and made it a fun little road trip!

It was awesome!  The concert itself was amazing but the excitement and joy on the girls faces was priceless!  They were beyond excited!  They would just hug each other and scream out of the blue!  SO CUTE!

It was a wonderful memory spent with wonderful friends!

That night at the concert, singing along to the songs (because the truth is, I love Taylor every bit as much if not more than Sweets!), I couldn't help but think of where we were 4 years before.

Children's Hospital.  DKA.  Scared.  Numb.  Overwhelmed.

And the contrast to the healthy little girls singing at the top of their lungs.

I am so grateful.

One of the songs from her new album is called "All Too Well".  As she sang the song on Saturday night, it struck me in a new way.

 I can picture it after all these days.

And I know it's long gone,And there was nothing else I could do

And I might be okay,
But I'm not fine at all.

I was there, I remember it all too well

Time won't fly, it's like I'm paralyzed by it
I'd like to be my old self again, but I'm still trying to find it

Diagnosis.

I think we can ALL still picture it all too well.  No matter how long it's been we can't forget that day.

And we may be ok.  But we're not really fine at all.

Because we know the disease all too well.

That was made clear to me tonight.  J texted me after school.  He picks her up from school.  She had a music show tonight and it was also pod change night.  We knew we needed to change the pod BEFORE the show.

When J told her of this, she had a complete meltdown.

She said, " They are never going to find a cure.  I'm going to have it forever.  I hate pod changes.  I hate anything to do with diabetes.  It messes everything up."

Knife to the heart.

What do you say to that?  Although we have NEVER said those things to her, we have thought them ourselves.  She has every right to feel that way.

She knows this disease all too well, too.

And after four years, that's how it is with diabetes.

Some days we've got it.  We are doing well.  We are ok with it.  It's in the background.  It's no big deal.

And some days...
Some days it messes everything up.
Some days it steals our hope.
Some days it steals our joy.
Some days it gets us down.
Some days it hurts.
Some days it's really hard.

After four years, I know this disease.

I know the games it plays.

I know that there are days when you want to scream and throw things and sit on the couch and sob.

There are days like today when you want so badly to take this from your child.  When you hurt so much that your seven year old even has to worry about a disease that she may have for the rest of her life.  When your heart aches that she can't just focus on her big music show and being a kid.

And there are days like Saturday when you see her sing with her friends at the top of her lungs.  When you can't tell that she has diabetes (except for that blood test after a low alert from Dex in the middle of the show).  When she ISN'T thinking about diabetes.  When she gets to be like everyone else.  When the joy on her face make her eyes sparkle.

It's the ying and the yang.  The good with the bad.  The light with the darkness.

I know all too well that the bad days will come.  But I also know that the good days will too.

And so tonight, I cry.  Tomorrow I will laugh.  And always I will remain thankful for my incredible, brave, courageous, strong, sweet, loving child and for the technology that keeps her healthy and alive.

A Spoonful of Sugar: An Interview with a T1 Mary Poppins

A spoonful of sugar helps the medicine go down....

Well, unless the medicine is insulin and then you will need to bolus for it!

Mary Poppins is a musical that I loved as a child and still love to this day.  I first saw the show as young child.  It happened to be just at the time that my aunt and babysitter would be leaving and I would be starting school.  I sobbed and sobbed thinking she would go off into the sky with her umbrella!

This show has always been a favorite of mine so I was thrilled to hear that Mary Poppins would be coming to our own local theatre!

But wait... It gets better!

Mary Poppins herself has Type 1 Diabetes!

Ok, so maybe not Mary Poppins but the extraordinarily talented actress, Madeline Trumble, who plays Mary Poppins does.

She was kind enough to be interviewed by my own little Type 1 Reporter who loves musicals and thought that a actress with diabetes... JUST LIKE HER... was about the coolest thing EVER.

Sweets came up these questions all on her own.  And Madeline was so sweet to answer!

Sweets:   How old were you when you got diabetes?  Were you in the hospital?  Was it scary?

Madeline Trumble:    I found out I had diabetes on the first day of Kindergarten. I was a month away from being five. I didn't need to be hospitalized when I was diagnosed. I got really lucky! 

Sweets:     Do you have a pump or a cgm?  What kind?  I have an Omnipod and a Dexcom I call Dexie.

MT:     I have a medtronic pump. I had the same pump for years and years and then last year, I got a new one! I went from blue to purple! It was a big change for me. 

Sweets:   Do you have any friends with type 1?  Are you the only one in your family with type 1?

MT:       I'm the only person in my family with Type 1. And I don't have any friends with Type 1. I kind of am on my own figuring it out... 

(When I read this to Sweets her immediate response was "Well... she does now!")

Sweets:      What happens if you are low on stage?  Do you keep a meter and juice close by?

MT: I've gotten pretty lucky and have never been too low on stage. But I also don't have a lot of time to test my blood sugar or drink juice, so I have to be really careful in the moments I do have. I have to eat good carbs before the show and at intermission. There are juice boxes on either side of the stage, and the whole cast and crew know I have diabetes, so there's always someone to help hand me a juice box if I need it. 

Sweets:     Do you test your blood sugar a lot?

MT: I've been testing a lot more since I've started the show. I have to be really careful, because the show is too hard on my body even when I have good blood sugar. 

Sweets:      What happens if you get sick (she means diabetes sick - not "real people" sick) when you are traveling?  Do you have a special doctor you go to?

MT: I don't have a doctor on the road. I have a doctor at home that I correspond with. But I've had diabetes for almost 20 years, so I know all the inns and outs and am pretty good at monitoring by myself. 

Sweets:     Was it hard to become a singer and actor with diabetes?

MT: No! I've had diabetes for so long, I don't remember life without it. Diabetes has always been a part of me and just something different about me. It can definitely be hard at times and make me sad that I have to deal with something no one else in my life has to deal with. But it's never gotten in the way of anything I've wanted to do. Diabetes makes us more special- because it makes us work harder. It has never held me back and I'm really proud to say that. 

A big THANK YOU to Madeline for answering all of Sweetpea's questions and for being such a wonderful role model!



If you would like information on the show and to see if it's coming to your area, click HERE.

If you live in the Dayton/Cincinnati Ohio area and would like information on the show and getting tickets, click HERE.

And stay tuned...  Sweets gets to meet Madeline IN PERSON on Thursday and we are seeing the show Friday night.  I'm sure we will have lots to share!

At Least It's Not...

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.

Spring Cleaning

I'm doing a little "Spring Cleaning" to the blog and wanted to take a minute to tell you about some new things....

Take a look up there at the pages (tabs).

You will see some new things!

I created tabs to tell you more about the Insulin Pump and CGM that we use.  If you click on the Omnipod tab you will find information on the Omnipod insulin pump and posts I have written about it. The Dexcom tab will tell you about the Dexcom CGM and provide links to posts I have written about the Dexcom.

I also updated the tab called Our Favorite Things.  If you click on it you will find links to products that we love!

And last but not least, I added more videos to our Channel D tab!

I hope to add additional informations as soon as possible!

Thanks for reading!