My son, Byron, just started his freshman year in high school. He was diagnosed with type 1 diabetes at the age of six. With high school comes a flurry of information about the future: each grade impacts Byron’s future options; community service hours will help break a tie for a coveted spot in a college; start planning for college tours; selecting the best college and on and on. It makes it difficult to live in the moment. Let this kid – and his mom – simply adjust to being out of middle school, just entering his growth spurt, a bit insulin resistant, eats everything in sight, interested in girls, and growing up very quickly.
Byron, age 6, year of diagnosis
Now that high school has slapped me in the face and thrown me four years into the future, I am feeling a bit nervous. Although college tuition is a bit daunting, that isn’t why I am tense. Here are the things that keep me up at night. Will he have a doctor that is as helpful as the one he will have had since diagnosis? Will he be able to find insurance? When he feels burnt out, who will listen to him and understand where he is coming from? Who will understand that he isn’t being defiant when he won’t answer a question — rather, his sugar is low and he needs juice? When he gets discouraged by the effort he puts into managing his diabetes because the results don’t look like any effort was made, who will be there to motivate him and cheer him on and to remind him that it is all worth it. We will still be part of his team, but he will need more and where will he be able to turn for help?
For years we have found support through the Juvenile Diabetes Research Foundation (JDRF). We have Walked each year only to meet new people who have become part of our ever growing support network. We have attended conferences presented by JDRF in collaboration with UCSF and left with useful information and greater hope for the future. Byron has greatly benefited from the research funded by the JDRF as evidenced by the continuous glucose monitor (CGM) that he happily wears. We figured out how to get his CGM paid through the JDRF website (www.curetype1.org).
Then there are the tireless volunteers, like me, who recognize that their child will – in the blink of an eye – leave childhood with diabetes still in their life and then become an adult living with type 1 diabetes still in need of support, good information, and a place to go where people “get it”. I am one of those volunteers and I am working hard to make sure the JDRF is not only a fit for our family at this moment in time, but in four years and beyond when Byron leaves home and starts exploring the world.
Volunteers and staff are working hard to create supper clubs, youth leadership programs, mentoring programs, social networks, tool kits, a website that provides reliable and current information.
Each year, there are five Walk to Cure Diabetes in the Greater Bay Area. Walks are a fun and easy way to start building your network and to understand the magic of the JDRF community. Both staff and volunteers strive to make sure the Walks a place where children living with diabetes and their families can begin building their support team and that adults living with diabetes – whether diagnosed as a child or an adult – can do the same. The Walk to Cure Diabetes works magic!
Here is what I see: My son leaves home and begins to find his way in the world. He finds a chapter of the JDRF wherever life takes him and he signs up for a walk. With it Byron begins to develop his very own network that can carry him through the years of his life. He won’t be alone. He will have options. He will have support. The JDRF will be there for him.
What about you? What do you see?
–Priscilla Call Essert
Byron 8 years later and four years to go
{ 6 comments… read them below or add one }
I see an amazing mom.
One thing that strikes me when I speak with adult type 1 diabetics (I am a mother of an 11 year old girl diagnosed in 4/04) is the absence of a “diabetic community” in their lives while growing up with this condition. I often hear “I was the only [type 1] diabetic in my family/school/town”. I can debate whether we are “lucky” to have so many other type 1 diabetics in our community but I know with certainty that we are blessed because my daughter has many friends with type 1 and will never feel like she is the “only one”. Kudos and thanks to the JDRF for helping to bring together our T1 children in play, support, and hope for the future.
I always wonder how it is that some people have no problem being “the only one” while for others it is a burden. Why is that? Anyway, my son was the only one with diabetes in his elementary school for the entire time and it never bothered him…I missed the support of other parents when it came to managing school issues, but he didn’t seem to mind. That said, he was pretty pleased to make friends outside of school who “get” the diabetes thing.
The good news is that capable children with diabetes grow up to be capable adults with diabetes. I was diagnosed with diabetes when I was 7. I am now 42 and have found my support group and doctor and insurance solution. My mom was also my biggest fan and helped me to realize that every decision I make has a consequence. Good or bad.
And although I was the only type 1 in elementary school in my area, I can truly say that I never wished for more kids to have it so that I wouldn’t be the “only one”. Being the “only one” is only a burden if you tell yourself it is.
I am sure you are right. It is so easy to forget that while in the midst of parenting. Also, we don’t encounter many people who can give us a glimpse into the future. When he pulls his pump out in public (or his test kit), more often than not, someone with type 2 approaches us and we get all sorts of horror stories. It reminds me of when I was pregnant and people would share their birth wars with me…not always helpful.
As children, we pick up on what is around us. If our parents are strong and tell us we have ability, that is what we grow up believing. If our parents tell us we are sick and they are worried and we have to be VERY careful and they are scared and… and… and… we, as kids will mirror that. I know my parents were worried, but the front that they presented was “Well, this is your challenge and we are your team, what do you want to do about it?” Not to say they didn’t keep after me about all the things that parents will have to pay attention to, but the idea that this was my body, my challenge, eventually made me into a Type 1 adult with a 5.6 A1c.
I did have other kids that I knew from camp. I loved camp. I loved it so much that when I was too old to be a camper, I became a counselor. So I knew that I wasn’t the only one, just the only one in my everyday life. I have always found that the kids that don’t have diabetes think you are cool because you give yourself shots. The bane of the type 1, but cool to other kids. My nieces and nephews all love to watch me test and give a shot. So I make it a show and a lesson at the same time.