JDRF Speaking Event Wrap Up

A huge thank you to the New Haven Connecticut chapter of the JDRF for inviting me to give the keynote at their 2015 annual meeting!

I took the opportunity to thank the nearly 100 advocates in attendance for their time, effort and selflessness. I shared with them how their dedication has helped Arden and how, in turn, I've shared our lives with all of you. Then I told them about some of the amazing things that you have accomplished and shared with me - Full-circle advocacy - I wanted to leave them with the feeling that their local efforts reach much farther than perhaps they realize.

and I took a few pictures for you to see...

Apple Watch...

Trying to decide... tie or no tie?

Hall at Wesleyan University where I spoke...

Before the guests arrived...

Mid hand gesture...

Arriving back at my hotel...

The BEST part of my trip... sleeping through the night!

I spoke a bit about my time at this event in episode #20 of the Juicebox Podcast - links to podcast episodes are below...

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Will Hauver

I would like to thank Lydall Hauver for her courage and for her desire to support the diabetes community. It speaks to the strength of our community that in the wake of what is undoubtably Lyndall's greatest personal tragedy, she would allow herself to be interviewed. I can promise you that if you have type 1 diabetes or love someone that does, this post and the podcast episode of my conversation with Lyndall will ultimately fill your heart with love, hope and a sincere desire to live well with type 1. So grab a tissue, read Lyndall's post and then listen to me chat with her and Will's good friend Paige, about his life and legacy. - My best, Scott

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The tragic and devastating death of our son Will, a beautiful person on the inside, and a good-looking man on the outside, has taught me something very valuable.

One person has the ability to make a positive and significant impact on this world.

More photos of Will at JuiceboxPodcast.com

It has been made clear to our family that Will made a huge impact on many people in his 22 years. The quality of Will’s life, and what he did with those 22 years was incredible. Wherever he went, he made an impact. We have heard over and over again about how Will’s compassion, his way of including everyone, his friendship, ‘saved’ many a friend from transferring from college, from quitting a team, from not joining in a great event. Will had such a handle on the ‘big picture’ - what was important in life. He was often sought out by his friends for advice and help. Using his humor he could really relate his advice without being preachy and condescending. He had such an easy, approachable, welcoming way about him, with the confidence that others admired and respected.

One person has the ability to make a positive and significant impact on this world.

“It is not length of life, but depth of life.”

— Ralph Waldo Emerson

This past summer Will was nominated to complete the ice bucket challenge for ALS awareness and donations. While donating $48.25 to an ALS charity (to an ALS charity Brigance Brigade) he filmed a video, which is very funny, and created a challenge for the JDRF and “LIVEabetes”. After Will passed away, his good friend from high school, Paige, one person, galvanized behind this comic but meaningful video, and created a movement to raise funds for the JDRF. Through a lot of hard work, a lot of learning about different social media options and a lot of creativity, Paige created a great group of supporters, myself, and my family included, to create a worldwide challenge raising awareness and money for type 1 diabetes. Incredibly, to date, we have raised over $80,000 for the JDRF to fund a cure for this dreadful disease.

Paige and Will, two young people, have made such an impact on this world, simply by being good people. They chose to live their lives by these simple principles: be kind to others, be inclusive, help others, know who you are and do not compromise your morals to fit in and make deep and meaningful connections with people you encounter. After Will’s death people from around the world rallied behind the man he was, to support the Egg Crack Challenge Paige worked hard to promote and grow. We now have an amazing community of friends, new and old, who have banded together to raise awareness and funds for a cure for type 1 diabetes.

One person has the ability to make a positive and significant impact on this world.

Our daughter Megan and Tommy are like Will and Paige, two people who have a keen sense of self, who stay true to that self. Similar to Paige they have worked hard to promote the Egg Crack Challenge. Additionally they have created T-shirts, posters and other item to share the joy Will created as an artist to raise money for type 1 diabetes and for scholarships in Will’s name.

Will told his girlfriend weeks before his death, “Each day is a gift, that is why they call it the present.” His ability to use humor, and kindness to live each day to the fullest, to make an impact on each person he encountered, has rubbed off on me, and on our entire family. This attitude is why we get up each day and try to salvage what we can out of each day, no matter how hard and how sad we may feel. Knowing that one person has the ability to make a positive and huge impact on this world makes me move forward to create my own positive, impact, each day. 

- Lyndall Hauver, Will's Mother

You can listen to my conversation with Lyndall and Paige with the player below, on Juicebox Podcast, iTunes, Stitcher or your favorite podcast app. 

links you need:

Will's JDRF Donation Page
Egg Crack on Facebook
Will's Egg Crack Video on YouTube
Rollins College Memorial Service for Will
Egg Crack Homepage
Shop for gear and bracelets (Supports JDRF and scholorships)

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Giveaway: Charlie Kimball Collectable Car

Who's up for a fun giveaway!?

Enter to win this Charlie Kimball replica Indy car and 5 pairs of the hugely sought after but rarely seen blue diabetes circle shoelaces.

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a Rafflecopter giveaway

There are a number of ways to enter the giveaway, and some of the entry options are even eligible to be completed daily (Like sending a tweet to Charlie asking him to be a guest on the Juicebox Podcast). 

Prizes & "Rules"

• 1 person will win the Charlie Kimball replica car and 5 pairs of blue circle shoelaces
• 1 person will win a signed copy of my book Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad and two pairs of laces 
• 3 people will win two pairs of the laces

The Rafflecopter app will choose the winners at random. Winners will have 48 hours to respond to an email asking for a mailing address or risk forfeiting their prize. Prizes have no cash value/equivalent. Contest exists at my discretion. It's just for fun and so one lucky kid can play with a Charlie Indy car and trading card.

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The Sleepover...

When the mother of Arden's friend recently inquired about having Arden spend the night at their house, I responded...

"That would be great, but we'll need to talk first..."

I did my very best to convey that the overnight hours would be unpredictable. I couldn't be certain if this random night would be stable and easy or random and exhausting... The family was up for the challenge. When I dropped Arden off at their home, I went inside to go over a few things. Honestly, with the advent of Dexcom's cloud service there isn't much for the host family to do besides understand insulin, bolusing, high BGs, low BGs, what those CGM arrows mean, the importance of a juicebox and of course... a real-world understanding of what could happen in a low BG situation and how to handle it.

In other words we just had a horrible frightening conversation that I tried to make sound very matter-of-fact, because mostly it is. The parents were, to their great credit, still on board and so I left with the understanding that I would help Arden via text during the evening and they would need to be reachable over night if Arden needed insulin or carbs.

What followed can only be described as "not optimal"...

After riding an unwavering BG during the late evening I had Arden take in a small snack to be on the safe side, her BG was in the 105 range prior to the snack. Small snack, no insulin - I was hedging my bets.Everything was going great until about 1:30 in the morning when her BG began to slowly descend. So I texted Arden to see if she would respond and she did, "Temp basal, off for 30 minutes should stop the drop" I told her. Not long after a text arrived from the host mom who could see Arden's BG on her phone thanks to the Dexcom Share, "Arden's BG is falling" - I told her that we handled it and that I would let her know later if there was more to do.

What followed was one of those low BGs that wouldn't respond to carbs, you know, the ones that even I am a bit unnerved by because they are unpredictable, require way too much in the way of carbs and nine times out of ten incur a huge rebound high - and well, all of that happened over the next 3 hours. The host mom and I said goodnight around 4:30 am.

The next day was mercifully a Saturday and Kelly stayed with the kids as I face planted on the first piece of soft furniture that I could find. 

A few days later I called the mom to thank her for all that she did to facilitate the sleep over. When I tried to say thank you she stopped me to say that it was her pleasure. She spoke about wanting Arden to feel welcomed and for her not to equate her type 1 diabetes with the sleep over. It was a lovely call. She went on to say that she didn't understand how intricate diabetes management was prior to that night and how she gained a huge appreciation for the disease. Then she offered to have Arden spend the night again "any time".

It was a lovely call... and as it turned out, a great experience. I guess unpredictable isn't always a bad thing...U

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Guest Post from Teddy's Mum

In a recent Juicebox Podcast Scott Benner said he wanted his daughter to ‘be herself as much of the day as possible’. That really struck a chord with me.

I want you to be yourself...

I just want him to be normal. I thought this over and over again during the first few months after my son’s diagnosis. It is very hard to accept that your child has changed forever. I grieved the loss of his carefree childhood. I felt over-whelmed by the responsibility of keeping him alive. He was three and he was our angel.

EVERY MINUTE of EVERY DAY we try and keep our son’s blood glucose as close to normal as possible. Teddy is now seven and his HbA1c is low enough that most of the time I am able to brush away dark thoughts about his long-term health.

I just want him to be normal. I still do. I want him to be himself and FEEL himself. I look at Teddy’s BGs and each number makes me wonder how he feels inside.

A low number can make this sweet natured boy become bad-tempered and rude, clumsy and sad. He drops his finger-pricker when I ask him to test. How does Teddy feel? Is his reality skewed? He is not himself. He needs sugar.

With a high number I sometimes see Teddy staring into space. He doesn’t listen to me. Can’t concentrate. He can be unhappy. I imagine the sugar pumping through his veins making him feel sluggish and his senses less sharp. He is being poisoned. Water. Give him water, and insulin of course.

Teddy

Recently at school Teddy was told off for shouting out in class. He started to cry. He cried and cried and said he wanted to go home. His carer realised that his blood sugar was quite high. Maybe this caused him to shout out. It was out of character. They couldn’t stop him crying and all the time his blood sugar was rising because he was distressed and this was making him cry more. They felt really bad for him and took him for a walk outside and gave him computer time to cheer him up. At the end of the school day his eyes were still puffy and red. We all learnt a lesson from that day.

For the last 4 weeks things have been good with Teddy’s BGs. Lovely Dexcom graphs lower my stress levels. But I have noticed his mood swings and behaviour changing with lower highs and higher lows as if he has become more sensitive to being out of range. I work all the time at keeping him in range. I feel so responsible for changes in his character and behaviour that may be caused by lows or highs. When he is yo-yoing I can’t imagine how he feels in his mind and body. But my little boy is amazing as he always bounces back to being his gorgeous sweet happy little self.

Anna Hutton - Teddy's Mum

Anna was a recent guest on my podcast... You can listen here.

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