Wednesday, May 26, 2010

Seems just like yesterday

One of the roles of being a dad to a diabetic child is being the husband to the mother of a diabetic child. I can't stress enough how important the husband wife partnership is to maintaining good blood sugar control, and more importantly, a sane mind.

When Cassie was first diagnosed with type-1 diabetes as a 1 year old baby, the news to us was devastating. My wife Marinda and I each had to deal with the death of our child's perfect health. The grieving however was not only personal - it was shared. There were waves of anger, guilt and despair. There were times where there was very little patience with each other. It's hard to be completely supportive when you have your own pain to process.

I know of many marriages that have been torn apart by the diagnosis. My wife and I were lucky to have diabetes become a catalyst to forge a stronger relationship - unified in a fight against this disease. I'll confess that my wife has done most of the heavy lifting over the years. She's very meticulous and wants to have her hand on the wheel. Sometimes it's hard to know when exactly she may need me take over- especially when SHE doesn't know when she wants to hand over control. The important thing for a husband/dad to do is to be there through all the confusion.

Today we're taking a little time to celebrate a day day twenty years ago when we tied the knot. I don't think we could have gone through all this without each other to lean on- to share the ups, the downs and the love. Happy Anniversary Marinda.

Monday, May 24, 2010

The Diabetic Apprentice

This morning over breakfast I told Cassie that Bret Michaels, the lead singer of Poison and star of MTV's reality series, Rock of Love won Donald Trump's The Celebrity Apprentice challenge. She was well aware of the personal troubles that Bret had been experiencing: his type-1 diabetes, his daughter's recent diagnosis of T1, his brain hemorrhage and mini stroke.

Her immediate question to me was what I suspect most people ask: "Did he win because of his diabetes and health problems?" It's reflexive. We all think there must have been a cheat or a shortcut to winning.

But instead of answering her, I asked her to think about what SHE thought the answer was. After a few thoughtful seconds she came to the same conclusion that I did- Bret won not because of his troubles- he won DESPITE them.

Friday, May 21, 2010

Daughter Doppelganger

Sometimes it's hard to understand your teen. OK- let's be honest- LOTS of times it's hard to understand your teen. If you're like me, when you were a teenager you vowed to yourself that you'd be SO much more understanding than your own parents once you had kids. Who knew?

As the hormones hit, both my teen daughters have shut me off. It's hard to have the same kind of daddy-daughter closeness as we once did. It's made it harder for me to understand all they're going through and everything that consumes their thoughts. I know Cassie's diabetes is a constant struggle for her, and though she may not tell me certain things to my face, I think I can get a glimpse of what she MAY be feeling by reading some of the posts from other young women like her on the juvenation discussions.

Here's a sample from 12-year old Shannon that makes my point:

"...Ive realized that yes im differant and i cnt have candy that the teachers hand out but i will kno myself inside and out. I dont know about you but i think its kinda kewl that we can have syptoms and we can feel what happens and we know more than the regular people. They dont know about diabetes. We do. Anyone i tell that i have diabetes they dont get it. They say ok whats that? Well to me it gets annoying! But i dont see a bright side to having diabetes but dont make it something that you completely hate. Otherwise its like hating yourself. There is NO GOOD REASON to EVER EVER EVER hate yourself. Make the best of life no matter you have one friend or 30 million. Embrace yourself and show off that you have diabetes."

Though her spelling by texting cracks me up, it reveals that for some, diabetes may act as a crucible that tempers our kids to be stronger and more self aware. Shannon was reaching out to a 20 year old who was having a hard time. I think that our kids with diabetes may be more wise than we think. They may just not share it directly with us.

Tuesday, May 18, 2010

Award Winner

Juvenation just won an award. We got the bronze Dosie- and have been recognized as one of the best medical social communities on the planet. Last week, Kevin Kruse from KRU Research described juvenation as "one of the most active communities I've ever seen." This is high praise. Kevin is a world-wide authority on e-patient interactions and social media. With over 10,000 members and tens of thousands more exploring the site everyday, our little site is not so little anymore. And not such a secret.

Here are several powerful anecdotes that come out of juvenation: One post I remember vividly was from a parent who was frantically researching about diabetes IN THE EMERGENCY ROOM as her child was diagnosed just minutes before with type-1. The community immediately rallied to share parental advice and emotional support. At least two other times the juvenation community and JDRF volunteers rushed to avert the suicide attempts of terribly depressed teens whose diabetes had driven them to the brink. One member,Sarah, shared an epiphany story that has led to her more diligent diabetes care after years of neglect. Another young woman boldly stated that she credits juvenation for lowering her A1Cs and getting her in better control.

Positive reinforcement and sound advice from the front lines work.

I feel pride with the accomplishment of public recognition with the Dosie Award. But more importantly, I am awed by the generosity, compassion and love that my new friends on juvenation exhibit daily. I may have started the ball rolling, but it's the members who deserve all the credit. Hats off to the juvenation community.

Friday, May 07, 2010

Birthday 10,000

It's my birthday today. Juvenation reaching over 10,000 registered members this month is my biggest present. It continues to be the largest Type-1 online community and it keeps growing strong. Hoo-rah! Thanks for joining the discussion.

UPDATE: Cassie served me breakfast in bed today. Low carb choices and healthy deliciousness- yum!

Thursday, May 06, 2010

David's Question

I had a rare opportunity to chat with David Panzirer who is one of the five trustees of The Leona M. and Harry B. Helmsley Charitable Trust. David is a man of tremendous energy and drive, and he's applied a lot of his efforts into finding a cure for diabetes. David's daughter Morgan has been bravely fighting Type 1 diabetes for several years; he knows first hand about the heartbreak that this disease can bring to an entire family.

In 2009 the trust disbursed $136 million dollars to charity, including $2.5 Million in donations to JDRF. This is a lot of money. More than most of us could hope to even raise for the cause over an entire lifetime. But David doesn't stop with simply stroking a check. He is an active investor - researching the best possible paths to a cure, funding researchers directly and even consulting with governmental agencies. It was clear to me after our discussion that many long hours and many miles traveled go into his quest for Morgan.

Many parents are OK to simply take care of the day to day diabetes management of their children. But not David. Explaining the force behind his work, he told me that he wanted to be able to look Morgan square in the eyes at the end of each day and know that he had done absolutely everything in his power to help her diabetes.

These days I can't look into Cassie's eyes around bedtime without asking myself if I've done all I could that day to help HER diabetes.