The Walk

 This past Saturday we donned our Team Elise shirts and walked the annual JDRF Walk to Cure Diabetes.

In all, almost 140 people came out and walked for Elise, and we raised over $11,000.  I am so proud of all the hard work my husband puts into this each and every year. We received a tonne of compliments on the shirts and the team... all of it my husband's doing.

One of the best parts?  Laura and I got to walk together... we haven't seen each other in awhile, and it was so to catch up.  The only thing missing was the third amigo, Jess.  

Aren't those pink shirts the bomb?  I don't think I have EVER willingly worn pink, but it's Elise's favourite, and she picked the colour. I certainly don't mind clashing for a day to support my sweet girl.  Plus it was so awesome to watch a sea of pink walking the streets of downtown Dallas.

Thank you to all the wonderful people who gave up their Saturday morning to come support our family, and to those who donated.  You have no idea what it means to us.  Thanks for making Team Elise great... and we'll see you next year!

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Just a reminder... if you want to order a World Diabetes Day shirt, please do so as soon as possible!  If you left a comment on my first post, I still need you to email me your order.  Click here for a step-by-step ordering process.  And please get the word out to any D-peeps that you think would want one.

World Diabetes Day: A step-by-step guide to ordering your shirt

It looks like we have enough people to go ahead with the shirts orders.  So if you really want one, here's how:

Step 1: Send me an email at shirts@deathofapancreas.com.  Yes, even if you left a comment on my last post.  I need to have all the orders in one place to maintain what is left of my sanity. Please tell me how many and what sizes.  Not sure what size you need?  Click here. Also include your mailing address in your email.

Step 2: Now you need to pay.  I know this takes a lot of trust on your part; giving some crazy lady who lives in your computer money.  You will get your shirt.  I promise.  If something goes horribly wrong and the order doesn't happen, you'll get your money back.  I promise.  I would never rip anybody, let alone a D-peep, off.  And there are people in the DOC who know where I live who would gladly come beat my ass if I did.  

The price is $12 per shirt.  That includes shipping. Here's the Paypal account: shirts@deathofapancreas.com

Step 3: Do all of this before October 20th.  That is the deadline.  And if you miss it, I can't help you out. The printer is doing a one time run and there's no going back after the fact.

Step 4: After you receive your shirt and wear it on November 14th, please send me a picture so I can post it on my blog, like these fabulous people did 4 years ago.

If you want to look cool for World Diabetes Day, order now!

World Diabetes Day: Return of the shirt

Remember this?

About four years ago, I designed a shirt for World Diabetes Day.  Made it available through my blog, and had over 30 people order them and wear them on November 14.

Well, I want to do it again.  So I'm gauging the interest out there in the DOC. Want your own WDD shirt to show off on November 14?  Leave a comment and let me know how many you would order and what sizes.  If I get enough response (say more than 50 shirts), it will be a go!  They will be priced in the $10-$12 range, depending on shipping.  Any profit made will go to Team Elise (which goes to the JDRF).

Here is the mock-up:

Interested?  Let me know!  And please pass this post along to as many people as you think would be interested. Let's get our blue circles on!  

The secret party

How do you celebrate 5 years of LIFE?

Honestly?  I don't know.  

I did it.  Although nobody probably realized it at the time.

You see, Elise's D-anniversary falls during a crazy time.  Right between her and Mattias's birthdays.  In the span of three days, we have three things to celebrate.  Not to mention that my birthday is within a week of all of it. That, my friends, is a lot of cake.

So we never actually deliberately set aside a celebration time.  I usually sit with Elise and have some cuddle-time while I explain that (fill in the number) of years ago, her life was saved.  And that I am so thankful for the medicine that keeps her healthy and here with us.

Because we have always thrown a joint birthday party for Elise and Mattias, the guest list gets a little big.  Okay, out of control. But it's not my fault. You know how they say that about half of all invitees will decline?

Our party had 3 people say no.

That meant 91 people said yes.

This isn't new... every year I seem to over-invite.  I think last year, 70+ people came to the party.  Fred wonders why I have to invite so many people, and I think the answer lies in the fact that her first birthday party was ruined... for it was in the middle of that party that we received the call from her doctor to take her to the hospital. I don't even have any pictures from my first born's, first birthday party.  Mommy guilt.

But enough psychoanalysis for now...

Luckily, the party was outdoors at a local playground that had a soccer field and a spray park.  My Mom, who always comes for the festivities, helped me make sure the party was a success. That help included making food for those 91 people.

The day of the party was crazy.  I hardly had time to breathe as people started to arrive.  I flitted around, taking gifts, inviting people to eat, and making small talk.  But I still was able to find a few silent moments just for myself.  And I  stood and I watched.

While she was surrounded by people who adored her.

Friends who wanted to play with her.

As she sailed through the air on a zip line, giggling and without fear

I saw her run off to the spray park; pump prominently displayed for all to see, and not caring one bit.

I watched her eat cake.  And chips. Sandwiches and juice.  All without worry and being bolused with ease.

And while singing Happy Birthday, I whispered a small prayer of thanks as I celebrated three things that day; the birth of my daughter, the birth of my son, and the saving of a life 5 years ago.

Having The Talk

No.  Not THAT talk... I think we're a few years away from that.  At least I hope we are.

No, this past Friday I went to Elise's school to give my own mini Diabetes 101 talk to her classmates.  I wanted to make it fun, interesting, and something they could understand.  The last part I had a little trouble with.

When it comes to diabetes, Elise is "reading" at probably an 8th grade level.  But I needed to explain type 1 in a way that a classroom full of 5 and 6 year old with NO diabetes knowledge would understand.

And I'm happy to say that it worked!  I prepared a slide show on my iPad with a mix of pictures of Elise, and pictures that helped to illustrate diabetes.

I actually had to give the talk twice, because Elise is in a dual language program.  So my first stop was the Spanish classroom.  It was a little tricky stopping for translation, and it was hard to find a flow to the talk, but the kids really seemed to enjoy it.  I ended my talk with Four Things I want you to Know About Type 1 Diabetes; one of those things being you can't catch diabetes by being Elise's friend, by hugging her or giving her a high five.

The best part was at the end of the talk when Elise and I stood up to leave, all the kids came forward and wanted to give Elise high fives and hugs.  Seriously... HOW CUTE IS THAT???

Our next stop was her English classroom.  The talk went much more smoothly this time and the kids loved all the personal pictures of Elise. We even got to show them a blood sugar check in action when the dex was showing Elise at 90, slightly down in the middle of our talk.  Her BG was actually 95, so they got to see why Elise gets to eat Smarties in the classroom from time to time... something they were very curious about.

They even asked some great questions at the end; can she swim with her sensor and pump?  If you can't catch diabetes from someone, how did Elise get it (Oy... try to answer THAT one on a Kindergartner level)? How does Elise sleep with her pump on?

At one point in my talk, I explained low blood sugars to them, and asked them if they could could be my special helpers.  If they ever saw Elise acting silly (or sillier than normal), or if she fell down and didn't get back up, they needed to get an adult right away.  I was happy to see they were really enthusiastic, and felt very important.

Since Elise will be with the same kids for the next 6 years, I most likely won't have to do The Talk again for awhile.  Which makes me kind of sad... I really enjoyed it with my tiny teacher by my side.

Riding the basal

It all happened over a week ago.  

Crashes after meals.

Countless packs of smarties.

Lows that took three times the amount of carbs to bring her up.

Temp basals up the wazoo.

Fred and I got into discussion after discussion about what to do.  She wasn't sick.  Nothing was different.  So what the hell was going on?

Finally we decided to ride the basal.  That is, to NOT bolus her for any more meals and see what happened.

We didn't correct any highs either.

Things weren't perfect... sometimes she would go into the 200s.  But she would always correct herself;  no bolus needed.

But we also had days where she would be low-ish (70) going into dinner.  She would eat 75g of carbs; including fries and gelato. Receive no bolus.  And be 118 when we checked about 3 hours later. Total flat line on the CGM.

It dragged on.  I won't lie, thoughts of a regenerating pancreas crept  into my thoughts, but I pushed them away knowing the inevitable highs were coming.  Regardless, the word "cured" danced on the outskirts of my brain, and I allowed myself to hope.

Of course, it all turned around one week after it started.  I knew it was coming, but it was still a dagger to my heart.  I should know better.  I DO know better.  But I am also a mom with the capacity to hope miraculous things for her child. And a little part of me dies when reality comes roaring back, as it always does.

I'll be okay.  I got to experience letting Elise eat whatever she wanted and not worry about what it would do to her BG.  I still counted carbs, but it wasn't the same.  

I'll just chalk it up to her pancreas giving us a little birthday/anniversary gift.

Things diabetes has taught me this month... August edition

September is here, let the real new year begin.  Okay, so this post is a bit late... but when your hear of what our family has been up to, you'll understand why.  But that's another post for another day. Onto the learning!

-Writing out a 504 can be daunting, but in the end it all turned out great.  We have a wonderful nurse, and a team that is willing to work with us.  The head health person for the district (can't remember her official title, and I'm too lazy to find it) was in our meeting and she had extensive experience with type 1.  She knew exactly what we were talking about, and had our backs when the 504 administrator said they couldn't make a certain accommodations.  When we protested that that the school HAD to do certain things, she piped up very quickly that we were right.

-I loved watching my husband get tough when they tried to say no.  One of the issues was that the school wouldn't provide an UDCA (unlicensed diabetes care assistant) for extra curricular activities. Fred very quickly interrupted with, "well, you HAVE to, that's the law).  He did it in a very pleasant, but very firm manner.  It was awesome.

-As much as letting Elise go was gut-wrenching, I have never seen a child who was made for school.  She loves it.  And it makes me happy to see her so excited.  Already we've had two glowing reports from her teacher on how kind, helpful and bright Elise is.  Okay, I'll stop being so braggy now.  But Elsie going to kindergarten has taught be the huge importance of letting go.  Even when it kills me inside.

-As great as our school has been, I know others out there are not so lucky.  A good friend of mine just moved to another state and is having to fight the school for things that ARE THE LAW.  It makes me so mad that I want to fly out there and help her kick some ass. But how terrible is it to be in such conflict with the people you are trusting to keep your child safe?

-Did you know that some insurance companies will cover extra supplies so you can keep a stash at school?  We had our doctor write a prescription for "school supplies", and received a months supply (at our normal co-pay).  If you need extras for school, call your insurance company to find out if they do this too!

Growing up too fast

It all started just after Lucas was born.  I was upstairs, nursing.  All my post-baby-being-born help had left and I was trying to figure out how I was going to get my two other kids dressed and ready to be out the door in the 20 minutes that were left before pre-school started for the day.

From my rocking chair upstairs I could hear their sweet voices as they chatted over breakfast.  Then, Elise's voice floated upwards, "okay Mattias... put your dishes in the sink.  I'm going to change your diaper and get you ready to go to school."

She then proceeded  to change said diaper, get him dressed, put his shoes and socks on, and help him brush his teeth; all while getting herself ready too.  

She was 5 years and 4 months old.

For the next 4 months, she would help me get Mattias ready, doing all of the aforementioned things, as well as getting their bags into the van and strapping Mattias into his car seat.

Since then, when Fred is out of town, Elise has taken charge of the bedtime routine (during which I am also usually nursing).  She runs Mattias's bath, washes his hair, gets him into his diaper and pyjamas, helps him brush his teeth, and reads him a story.  She did this all on her own, telling me, "don't worry Mom... I've got this."  I never once asked for her help.

All this before her 6th birthday.  

And almost 5 years into her diabetes journey.

Two days ago, Elise turned 6.  Today her diabetes turns 5.  

Sometimes I wonder if that short 12 months between birth and diagnosis ever existed at all. 

She is growing up at lightning speed before my eyes.  Too fast.  Part of me blames diabetes for her uber-maturity-on-steroids.  Don't get me wrong, I love that she helps.  That she wants to help.  And does it with joy and good cheer. But I also want her to be a kid, and enjoy her care-free(ish) life while it lasts.  

I want her to just be a kid.

Happy D-day, Elise... you are simply amazing.

just before dx

today

Six

As we snuggled together on the eve before she turned 6, Elise said to me, "I wish I could stay 5... everything is perfect when you're 5."

If she only knew the greatness that awaits her; this year, next year and all the years of her life.

She will do amazing things.  She will have an amazing life.  I can feel it. 

And it all started 6 years ago today. Happy birthday to my sweet, wonderful, amazing girl.  I love you and love you.