Friend Parade

We have been very fortunate to have met and made friends with so many truly good and caring people. I have shared stories about many, but have as many stories queued up in an overdue list of pending blog posts. This is mostly because these people are so meaningful to us that I’m afraid my words won’t do their awesomeness justice.

With great certainty I know that the relationships we have developed with those who understand what living with diabetes is, and even some who may not completely relate, are what keep us stable, able to cope and live normal and productive lives. Our true friends are the best therapy that we could ever have. Without these friendships, I am sure diabetes would preoccupy and dominate my thoughts. It’s not that I don’t worry, but I feel my worry is in proper perspective, or at least a better perspective than it would be otherwise.

In the coming weeks, I will be sharing these belated stories. I have accepted that although my words might not relay how great these people are, I owe it to them to try.

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Mrs. Muller | The Standard

Mrs. Muller & Caleb - 1st Day of School

OfficeMax created the “A Day Made Better” event to bring awareness to the needs of today’s teachers and to “work to erase” teacher funded classrooms. When I read that Leighann, as a Max Mom, was holding a contest specifically to allow teachers of children with diabetes to get the accolades and credit they deserve, I wasted no time in preparing my nomination of Caleb’s current teacher, Mrs. Muller.

I’m happy to say that my entry was picked as a winner and I was able to present Mrs. Muller with a $100 gift card to OfficeMax.

Here is what I wrote. It comes from my heart.

As a background, Caleb has had four different teachers and seven different nurses at school since being diagnosed with type 1 diabetes. Every teacher he has had has been loving, caring and concerned for Caleb’s well-being. Not one gave resistance to learning what they needed to do for his special needs. But Caleb’s current teacher has been exponentially superior in providing Caleb a safe and caring environment.

There are many teachers that learn to count carbs, administer insulin, understand how to treat a low blood sugar and even inject glucagon if needed. Caleb is blessed to have a wonderful school nurse who has the primary responsibility for all of those things.

What Caleb’s teacher has offered him is as important, and some may argue more important than all of that. Caleb’s teacher has embraced Caleb as Caleb first, and Caleb as a child living with diabetes second. That doesn’t mean she gives his diabetes less importance. She gives it the absolute most importance by thinking of Caleb as a person first, while still managing his needs as a child living with diabetes. She appreciates the emotional toll that living with a chronic condition can have on a person and that labeling Caleb as “the diabetic” is harmful emotionally.

What is extraordinary about what Caleb’s teacher does, is what she doesn’t do. She doesn’t give his diabetes unnecessary attention.

That may actually sound like it’s easy to do, as if it’s just a matter of ignoring it. If you have ever managed the care of a child with diabetes, you know that it is, in fact, very difficult to do. It’s like being a magician using smoke and mirrors to lead a normal life while managing a very not normal, extremely intrusive thing.

Caleb’s teacher has been able to accommodate every single request I have made without the slightest hesitation. She has coordinated a daily schedule that provides for normalcy in the classroom and inclusion of Caleb in everything the other students do, when they do it, to work around his diabetes schedule. When there are unplanned needs to check Caleb’s sugar, they flow as smoothly as possible and without obvious interruption to the class instruction.

Although she could, she doesn’t just pass him off to the school nurse. She expresses interest and willingness to learn all the details of his care to the end of making a better day for Caleb. She goes out of her way to talk to the nurse to review the day’s events when the children are not around. No one asked her to do this. She doesn’t have to do it. She wants to do it. For Caleb.

Of course it is important for our children to be medically safe at school. It is equally important that our children’s emotional well-being be cared for. Studies show that living with a chronic condition like diabetes that takes constant, day after day maintenance can lead to severe emotional problems including depression and socialization weaknesses. I know that Caleb’s emotional health is being cared for. I know this because he gets off the bus each day with a smile on his face and skip in step that I haven’t seen before and didn’t even realize was missing. I know this because anything diabetes related about his day is the LAST thing he brings up when it used to be the first.

I hope from the above that you can see that Caleb’s teacher is passionate about the well-being of her students. She is dedicated to her students no matter what their differences. Her innovation is in her approach to Caleb. She accepts him and all of him fully and completely. Where it would be easy to let Caleb stand out while he cares for his diabetes, she has been able to creatively balance his needs with the needs of all the children in her class without skipping a beat.

I will never be able to thank Caleb’s teacher enough for this. This is not something that can be repaid. But $100 is a start.

I feel very strongly that the emotional as well as the medical needs of students with diabetes be prioritized equally. In my opinion, Mrs. Muller has set the standard of care in meeting and properly balancing both of them.

To teachers everywhere, whatever the needs of your students may be, I raise my glass to you for everything you do for and give to our children. Thank you.

Mrs. Muller played an important role in making WDD 2010 special which you can read here (paragraph about half way down starting, “Perhaps…”).

Breakthrough with Banting, Best and Ritzdorf

new york national historical society frederick banting charles best discovery of insulin breakthoughYou may have heard about the exhibit that was held at the New York Historical Society based on the book Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle.

My friend Kay, who I met on Twitter, mentioned that she was taking a trip to New York and I told her about it. I was disappointed that she and her mom would only be in town during the week because we wouldn’t be able to make the trip to meet them since the kids would be in school.

Then I thought, Why can’t we make the trip? I’ve been to almost all my kids’ school field trips and if there’s a field trip worthy of taking for my family, this one – one that teaches about the discovery of insulin while also meeting a model adult who has grown up with diabetes with her equally impressive mom – is it.

So that’s what we did.  We pulled the kids out of school early one day for a family field trip.

frederick banting charles best discovery of insulin katherine hughs breakthrough
360 vials of insulin for a single patient; approximately 27% if his lifetime supply

The exhibit was moving. We saw pictures of children before the discovery – starved just to stay alive in the hope that some kind of cure would come – and after – chubby cheeks and barely recognizable. There was even a letter from one of the boys to Dr. Banting stating with pride, “I’m a fat boy now.”

Elizabeth herself was kept alive with such meager portions during the years between her diagnosis and her first injection of insulin, that she dwindled to a mere forty-five pounds just before turning fifteen years old.

We saw log books listing people diagnosed with diabetes, their diagnosis date, food regime and date of death, which invariably was only a short time after their diagnosis. To see the handwritten notes defining such gloom was poignant.

There was the newspaper article with pictures of Banting and Best and the declaration that a cure had been discovered. I pictured myself today seeing a headline of a true cure for diabetes and thinking that the elation and relief people must have felt back then was equal to or greater than what I imagined feeling.

If you haven’t already read this book, I sincerely recommend it. I knew all the basics of the story. There was no surprise ending. But learning about that time – directly before and after the discovery of insulin  – through the eyes of the people who were living with diabetes, caring for those with diabetes and working on the discovery – was something truly profound.

frederick banting charles best discovery of insulin kay ritzdorf
Caleb writes about his anticipation for the trip (the exclamation marks go on for two more rows on the back)

So you know Banting and you know Best, but who is Ritzdorf, you may ask. Well it’s actually two people – Kay and her mom. Jody. We could have made the trip to NYC anytime. Sharing the exhibit with the Ritzdorfs is really what made our trip special.

This was my first IRL meetup with any of my online D friends. I wasn’t sure if meeting someone live started things over fresh, or you picked up where you left off online. It was the latter. I was in the hall reading one of the items on the wall, and I recognized Kay as she walked by. I turned and just said, “Hey!”

frederick banting charles best discovery of insulin breakthough
I think Caleb wasn't too far off in his prediction

We made full introductions and continued enjoying the exhibit together. Afterwards we made our way to the gift shop. All the while Kay and Jody chatted it up with my kids. They were genuinely interested in each of them. It was like they were family. If you ever want to win someone over, talk to their kids earnestly. It warmed my heart and made me smile. I knew Kay and her mom were good people and weren’t just being polite when they asked to meet up.

Caleb was matter of fact about it all, but underneath I know he was very excited to be in Kay and Jody’s company – people who really understood what living with diabetes is. Colin and Kay talked about the book. Colin is the reason we purchased it, he was so interested in reading the full story. Lila almost exploded with glee when she caught a glimpse of Kay’s pump – running over to me in her five-year old discrete way of whispering not so quietly in my ear, “she has an insulin pump and it’s PINK!”

diabetes online community
Colin, Lila, Caleb, Jody, Kay, Lorraine, David - Forever Friends

We were able to convince them to have dinner with us. It was so enjoyable to get to know them better and hear about their trip to New York. It was Kay’s first time to the Big Apple. We talked about diabetes and about things not diabetes. If not for the need to get the kids home to bed on a school night, I’m sure we could have spent hours and hours talking.

In fact, I’m hoping on their next trip to NYC we’ll be able to meet up again – if they’re willing to put up with us, that is!

Hands down, this was the best field trip ever!

Shortly after our meeting, a special package came in the mail. Caleb’s new Huskers hat displaced even his NYY one for more than a week straight.

Thank you, Kay and Jody, for making the time in your brief trip to New York to meet with us.  We are so happy to know you and call you friends.

nebraska huskers
New Nebraska Huskers Fans - Thank you Ritzdorfs!

Mr. Incredible | Four Years Later

Dash for Halloween a couple months prior to diagnosis

It’s been a relaxing holiday recess. No running around for the normal activities. Just hanging out, playing, enjoying each other’s company and watching movies.

Among the movies we watched was one of my favorites that we hadn’t watched in a while.

Four years to be precise.

Four years ago Caleb was three and was a huge fan of The Incredibles. More specifically, a huge fan of Dash.

As we watched the movie, I realized Caleb was going through his Dash phase at the time he was diagnosed with type 1 diabetes. It all starting coming back to me.

I remembered being told by the pediatrician that we needed to go home and do nothing other than pack a bag and get to Yale New Haven Hospital as quickly as we could.  I went home, packed the essentials and ran downstairs to my “stash”.  It was after Christmas, but before Caleb’s birthday and I had some things collected for him. I pulled out a few. I remembered presenting him with the storybook featuring The Incredibles in the ER in an attempt to distract him while what seemed like ten people tried to hold him down to place an IV in his arm. I remembered being in his hospital room with him the following day, just the two of us, and giving him The Incredibles LeapPad game in an attempt to cheer him up. It didn’t work all that well.

I remembered how only weeks after being diagnosed Caleb had his fourth birthday party.  The theme was Disney’s Cars, but many of his gifts were Dash related, like…

…the lamp that also holds his medical ID bracelets…

ID Bracelet Holder/Lamp

…and Dash himself.

"I'm the Dash!"

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I remembered not caring how many gifts Caleb got that year when normally I try to be careful not to overdo it and spoil the kids. That year he couldn’t be spoiled enough.

I remembered him wearing the jersey that Grandma and Grandpa had given him for Christmas. He wore it during his hospital stay and also at his birthday party.

Breaking into the toy closet at the hospital.
Wearing his favorite jersey at his 4th birthday party.

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Then I remembered the doll Caleb made. He was given a plain, muslin doll in the hospital to practice giving injections. He made his doll “Dash”.

I remembered how we used to tell him that Dash was so fast at checking his sugar and giving himself injections that you couldn’t even see him do it.  I also remembered Caleb completely not believing us, but playing along nevertheless.
Dash has diabetes too!
Taking care of Dash

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I remembered the picture we took of Caleb days after diagnosis, smiling, getting a shot in his arm, to show his grandparents who had just left for their winter in Florida that he was okay. He was wearing an Incredibles hat.

"I'm okay Grandma and Grandpa."

There are a couple of “classic” pictures of Caleb with signs of Dash in them.  The day he started pumping with his OmniPod

First Pod - April 2007 - Can't tell but those are Dash PJ's

And his wink picture which has been featured in our local JDRF golf fundraiser pamphlet –

Dash PJ's yet again.

It only occurred to me as we were watching The Incredibles the other day, that this movie will forever be associated with Caleb’s diagnosis. There’s no separating the two.

Today is Caleb’s four year diaversary.  During the last couple of weeks he passed the mark in his life where he has now lived with diabetes longer than without it.

We’re not ignoring this day, but we’re not exactly celebrating it either. We talked about it this morning. I asked Caleb if he knew what today is and he replied, “Yeah, it’s the day we go back to school.”  I asked if he knew what else it is. He said, “Oh yeah. It’s the day we went to the hospital – cool.”  I wrote him a special note for his lunch box. He’s bringing his muslin Dash into school to share with his classmates. He gets to pick what we’re eating for dinner. He got some extra hugs and kisses this morning. But for the most part it’s just any other day.

Nothing incredible.

Even though we think Caleb kindof is.

Dash overload - January 2007
 

Caleb - 4 years later, January 3, 2011

 

The Magic of Book Buddies

“Book Buddies” is a program in my children’s school where older kids get paired up with younger kids and they spend time each week reading together.  Lila is in kindergarten, Caleb is in 2nd grade and Colin is in 5th.  Lila’s class is paired with a 4th grade class, which to her delight includes a certain love interest of hers, though she is not paired with him as boys are matched with boys and girls with girls.

Caleb knew his class was pairing with a 5th grade class and was disappointed to learn it wouldn’t be with his brother’s. Oh well.

It had been a more challenging than normal D week at school. I stopped by on Friday to pick up something PTO related, and bumped into the school nurse, Mrs. M.  She did as she normally does – talked to me about Caleb’s day, encouraged me, told me how well he handles things – she’s such a blessing. She went on to tell me that something very exciting happened earlier in the day, but she wanted to let Caleb tell me.  She described how absolutely ecstatic he was, describing his smile and elation. Whatever is was, it was big news, because she couldn’t say enough about how thrilled Caleb was. She let me guess and somehow I got close enough to force her to reveal the news.  It brought me to tears.  I’ll let Caleb tell you:

After a fews days of emotional lows, this was a particularly poignant high.  The moments when diabetes actually makes Caleb happy, and to this depth of happiness, are few. I cannot thank Caleb’s and David’s teachers enough for seeing this opportunity, seizing it and making this “Buddy” change.  This will be one of those moments that I know will stick with me, and I’m pretty sure with Caleb as well.

As far as being disappointed about not being paired with his big brother, well that’s completely forgotten.  He can read with Colin any old day.

More than a shirt

The weather turned warm and I took out the bin of short-sleeved shirts and shorts.  Caleb’s first choice was emphatically this shirt:

Lauren's Walkers

It’s cute, right?  But it’s more than a cute shirt.  It’s the shirt that Lauren gave him.

Caleb met Lauren this past December. She was one of the other two Simple Wins winners.  Caleb completely loved meeting Nick Jonas, but the impact of meeting Lauren and Bradley was just as significant.  They are also rock stars in Caleb’s eyes.

When Lauren, Bradley and Caleb were waiting to meet Nick, I saw that Lauren was holding three gift bags.  Caleb had his Burning Up book for Nick to sign and a heartfelt note to give him.  I saw three bags and thought three brothers – Nick, Joe and Kevin.

One of those bags was indeed for Nick, but the other two were not for Nick’s brothers, but for two other young men: Caleb and Bradley. In Caleb’s bag was a beautiful, thoughtful note, a DVD featuring former Chicago Cub and fellow T1D, Ron Santo, a package of Starburts (perfect for lows at 4 carbs a piece) and the red shirt.

How amazing is Lauren? It’s no wonder that Caleb could be smitten with her.  She is as beautiful on the inside as she is on the outside.  She touched Caleb.

Even though the total amount of time spent with Lauren and Bradley was only a handful of hours, Caleb sees them as his friends.  They are the first people he has met in person and socialized with that live with T1D. He celebrated something great and fun with them. Diabetes brought them together for something GOOD.

I will remember meeting them and their moms as much as I will remember meeting Nick.  I believe Caleb will too.

He picked Lauren’s shirt first and continues to throw it on his back as soon as it is out of the wash.  It’s right up there with his NYY garb.  Doesn’t that say it all?

Caleb with friends Lauren and Bradley