Type 1 is really Type All.
That’s the message Delhi Township resident Sam Weidner and his family live, and one they will take to Washington, D.C., for the JDRF Children’s Congress July 8-July 10.
Weidner was selected as one of four Ohio delegates for the biennial event, in which members of the Type 1 diabetes community share their stories with lawmakers and others, advocating for more research funding and general awareness of the disease, which forever changes the lives of those who have it and everyone in their universe.
Sam’s mother, Diane, and father, Rob, will accompany him. The Congress is a continuation of their volunteer efforts with JDRF Southwest Ohio and something that has been part of their life since Nov. 2, 2004, when Sam was diagnosed at the age of 15 months. Rob has participated in JDRF bike rides, including one last year in Loveland, Colorado, at which Sam and Diane volunteered. They used to organize a team, “Sam’s Superstars,” for the fall walk, have been involved with the spring gala and Bourbon and Bow Tie Bash. Diane is finance chair of the local JDRF board.
“It’s a disease that your whole family lives with… If Sam has diabetes, our whole family has diabetes,” Diane Weidner said. Rob related the story of a day when Sam had just begun summer vacation from elementary school. The change in routine had caused Sam’s blood sugar to drop (Sam was not yet using a continuous glucose monitor). The family called 911 – fortunately, there was a Delhi fire station within a mile of their home.
One of the first responders was familiar with the family.
“Literally he heard the call come in through the dispatcher. He’s a Type 1 dad. He knew our family and they were here lickety split, and we had our two older boys up at the (corner), like Rob said, it was late, it was dark, and they were up at the stop sign waving them in. It was scary,” Diane said.
Robert and Brad are Sam’s older brothers – Robert is about seven years older and Brad is about 4 ½ years older. Their parents remember when they first understood Sam’s condition.
“Cincinnati Children’s did a really good job of teaching them, because at the time Robert would have been like 8 1/2 and Brad would have been like 6, they were pretty little, but Cincinnati Children’s worked with us to educate them, because we needed them to be aware of what was going on, because we needed them to help us,” Diane said.
“Not to be too afraid because the whole word ‘diabetes’ has the word ‘di’ in it, so they’re thinking, ‘What’s happening?’” Rob said.
Rob Weidner had some experience with Type 1 diabetes. He has an uncle and aunt, both on his mother’s side, who are Type 1. Still, the diagnosis took them by surprise. They noticed that Sam had been wetting through his diaper, and on Halloween 2004, through his stroller seat as they went trick-or-treating in the neighborhood.
“I never thought in my wildest dreams did I think we had a 15-month-old with diabetes,” Diane said. “I had never heard of a child that young having it. And I think that maybe while the pediatrician was a little dismissive, and he told us he had never diagnosed a child that early.”
They almost immediately became involved with JDRF, and discovered the support system that has become a trademark of the Type 1 community – both inside and outside of JDRF. A woman with whom they were put in contact during Sam’s stay at Cincinnati Children ‘s came to their house and showed them how to change insulin pump sites (Diane said that Sam was the youngest person Cincinnati Children’s had put on a pump).
When Sam started school in the Oak Hills Local School District, staff there helped to ease the transition.
“He had a phenomenal school nurse when he was in elementary school that we always joked she should get a front row seat at his wedding, because she’s part of our family now,” Diane said.
“Like a second grandma,” Rob added.
“She advocated for him to see that we has … they didn’t have any other diabetic kids, and here he is in elementary school with 800 other kids and she was a pioneer for us,” Diane said.
Later, when Sam expressed interest in participating in sports, the family made sure coaches understood Sam’s needs even as they attended all practices and games, from start to finish.
“Until a few years ago, we were always there, and now we’re able to let loose a little bit and he’s able to do it more on his own, even to the point where last summer, going into high school, the basketball coach said, ‘Well, we’re going on an overnight and you’re going with us,’ and we were like, ‘Wait a minute. We need to talk about this.’ And he was like, ‘I can do this. I’ll stay up all night if I have to.’ So he was very supportive. A lot of the coaches we’ve had, we’ve been very blessed. We’ve had great coaches,” Rob said.
Oak Hills varsity basketball coach Mike Price met with the family when Sam wanted to tryout for basketball.
Mike said to us, ‘We’re going to have a meeting.’ He brought his staff in. He said ‘I want you all to listen to this.’ We did a little training session with Mike and his staff, and he just told us, whatever Sam needs, our job, his first priority is not basketball, our first priority is his health and safety.’ And as a parent, that’s just awesome,” Diane said.
Sam said he has become more in tune with what his body is telling him, particularly when competing in athletics.
“I would say mostly the hardest is cross country, because when I would run distances like, usually my biggest symptom for going low is just tired, like I’m going to fall down, my legs, but when I’m running, I’m like a mile, a mile and a half in, I don’t know if I’m low, I don’t know if … I’m just thinking I have to finish,” he said.
That balance is not always easy to maintain.
“One of our jokes in our family is that his middle brother was a really good runner for Oak Hills, and he had a meet, and Brad, our middle son, was there and he’s on the sideline screaming ‘You’ve got to run until you can’t feel your legs,’ and he’s like, ‘If I can’t feel my legs, that could mean I’m low,’” Diane said.
As a delegate to the Children’s Congress, Sam had to prepare a two-minute video and scrapbook to present to local legislators. The message, though, comes more from the heart than from a script. Sam completed an essay as part of the application process.
“I remember the one thing he said, I think you even wrote it, didn’t you, was ‘I have stage fright and I don’t know that I’ll be comfortable talking in front of a large group, but I’ll do it if it might help us to get finding to help lead to a cure.’”
“I’ll do it if I have too. If it’s for a good cause, so I’ll do it. I’m excited, I guess,” Sam said.
What would he tell a legislator in a one-on-one meeting?
“I would just talk about how much of an impact it has on my life and how it makes me kind of different from everybody else, and just talk about what I do and what I experience and what I go through, and I would probably talk about other families and how they’re also affected by it, and we’re still privileged, but there also other people that aren’t as privileged and some people have trouble with fundraising we obviously do as much as we can, but that extra bit that we can get from them would be likely needed.”
Written by: Richard Maloney, JDRF Volunteer