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