Embracing Life & the Child with the Disease

Last night was our first JDRF Kick-off Dinner for the Annual Dallas Chapter Walk for a Cure.  I was so excited to go, just to see and get involved.  We have already met our goal of $1000, but I wanted to see people, observe and just learn a bit.  When I first walked in, I saw the JDRF tables, got our name tags, and saw all the little sneakers.  Then began to look around and see Omni Pods and pumps and medical bracelet on people big and small . . . I was surprised by the wave of emotion.  I did everything I could to keep from bursting into tears.  We were here because of MY Ryan, and my heart ached all over again.  Then I was a little angry with myself.  What is wrong with me?  I don’t want to be sad, I want to be encouraged, I am/we are not alone.  But I guess it’s all part of that grieving process and we are still in our first year crossing another “first” bridge.  Ryan and Rufus 

I honestly didn’t relax and calm down until I saw the look on Ryan’s face when he saw “RUFUS” the JDRF diabetic bear walking down the aisle.  For those of you who don’t know, JDRF, at dx, gives a care backpack full of goodies.  Included in the bag, is a stuffed bear who has diabetes.  On Rufus’ arms, belly, legs and hip are colored patches showing where Rufus gets his insulin shots and the kiddos can give Rufus shots when then get them.  He also wears a medical bracelet.  Ryan sleeps with this bear and loves him dearly as most young T1ers do.  And when he saw Rufus, he lit up.  Yes, I did calm down inside, but I still teared up with I saw Ryan’s excitement seeing this stuffed bear.  It’s amazing the things that bring us comfort. 

Toby and Ryan, both dx'd at age 5


Then, the keynote speaker was announced ~ Dallas Stars Forward, Toby Peterson.  He gave his story about how he was diagnosed at the age of five, just like Ryan.  And how in the early days, he missed a hockey practice and he wondered if it would always be that way.  He even mentioned how he missed one of his first practices with the Stars because of hypoglycemia and he was concerned about how the coaches and the team would react.  And he said they were all great about it and worked with him and understood.  He explained that he can still play hockey, he just has to be a little more cautious than the “average bear”.  He checks his bg ten to twelve times per game.  And encouraged the T1ers and their parents that D doesn’t have to stop your dreams.  It was good for my heart.  Afterwards, the boys got to meet Toby and Ryan had his picture taken with him. 

But one of the most memorable parts was meeting a few of the local families.  When we signed up for the JDRF Walk, my information was given to Fred C as my contact person if I had any questions.  Fred has a daughter that was dx’d a few days after her first birthday; she’s now about two and a half.   As we got connected on facebook, I realized he was married to Joanne of Death of a Pancreas.  Fred, Joanne and Elise were at the dinner and it was wonderful to meet them and talk with them and have some real live people in front of me that I met in cyberspace and by phone.  As I was talking to Joanne, she called for Jessica.  I couldn’t believe it, but it was Jessica that I had been talking to via facebook message (and reading her blog) over the weekend. When I introduced myself and the connection was made, we just hugged like we were old friends.  We have children who have common disease, we share our frustrations and victories dealing with that disease and it automatically connects our hearts.  As much as it was hard when I first got there to be there and why we were there, I was immensely comforted by the time we left.   

But most importantly, Ryan was happy and glad to meet some little ones just like him.  And after all, that’s really all that matters.  🙂


Comments on: "JDRF Dinner with Special Guests" (1)

  1. It was so nice to finally meet you too Amy! I’m glad you had fun and Ryan was able to see all the other kiddos out there that are just like him. I guess the next time we’ll see you is at the walk!

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