Every day, the JDRF community is moving #ForwardAs1 to improve the lives of people living with type 1 diabetes (T1D).

Meet the King Family! Bayard and his family have been involved with JDRF for many years; Bayard’s two sons live with T1D, as well as his cousin. In honor of National Diabetes Awareness Month, he shared their experiences with T1D.

For someone who isn’t familiar with T1D: what is day-to-day life with T1D like?  

• My first son Theo was diagnosed with type 1 when he was five years old in 2008.  My son had neither a pump nor a continuous glucose monitor (CGM) for the first three years.  It was a regimen of about ten finger pricks per day during these years, between shots of long- and short- acting insulin.  Theo could not understand why this routine never ended.  And the medical providers only focused on the medical, not the mental health side of treating diabetes.

• Nowadays it’s much more manageable.  Theo and Alex are older and wear a CGM, which is life transforming.  Our medical providers provide the full range of medical and mental health services.  However, it still never ends…. the boys still need to remember to bring glucose medications, watch for highs and lows, change sites, etc.  But if we go on a trip, we have to make sure we pack all we need for diabetes.  Outdoor trips like skiing or hiking also present some wrinkles — such as whether to wear a pump on a particular outing.
• Additionally, there is the job of inventory management.  There are approximately 30 pieces of equipment to remember to keep in the closet, from insulin to batteries for the backup blood glucose meters. We have seven different insurance providers/health reimbursement entities, three mail order pharmacies, one mail order medical supplier, one local pharmacy, and two other mail order providers of related equipment.  All of them need coordination.  There’s endless paperwork.

What do you wish people knew about living with T1D?  

• You never stop worrying about how your children are handling this condition.  Type 1 means my boys must always change their sites and always keep glucose tabs on their persons.  It means that parents give up parenting a little and become health care workers.  It can also lead to tension within the family unit as the management of diabetes takes up time and can push other family priorities. It also means that there are a lot more medical appointments.  There’s never any laissez-faire.

For those living with T1D and those who love someone with T1D, looking Forward is what fuels our vision and mission to cure, prevent and treat type 1 diabetes and its complications. What and who are you fighting for?  

• Like all people impacted by T1D we hope for the cure. The technology advances have been fabulous, and we are super grateful; but you still have to manage the condition, and that’s work.  Children and adolescents forget to manage so as parents we must be constantly vigilant. We fight for our sanity as we worry constantly about the health of our loved ones.  And of course, we fight for their long-term health.  We always worry that our sons’ health could be compromised, and their quality of life affected by the long-term impact of higher blood sugar.
• About 10 years ago I was driving home from Washington, DC with a friend and there was a big traffic jam on one of the Delaware bridges.  About 10 cars ahead of us this man got out of his car and walked back towards us and was knocking on every car window.  We didn’t know why. Finally, he got to our car, and we rolled down the window — he was looking for sugar and announced he had diabetes.  He looked miserable.  Fortunately, I had glucose tabs in my pocket like I always seem to.  I gave the whole tube of tabs to this man.  He looked ecstatic and gobbled them down.  I walked him back to his car as he was still unsteady.  I think about him when I think about my sons.

There are two good things about type 1 diabetes:  

1. I bonded with my oldest son, as we worked together to manage the condition from the age of 5.
2.  From time to time, a friend will call me to ask me to talk to the parent of a newly diagnosed child with type 1.  I am always pleased to calm the nerves, listen, console, and give hope to parents.