January’s “Heart to Heart: T1D Caregiver Spotlight” is on Erin Forehand. Erin is a psychologist, living in Tampa, Florida, with her husband and son. Erin and John’s son, Will, was diagnosed with T1D in October of 2018 at just three years old. Now six years old, Will is in the first grade and loves everything about sports! Right now, his current favorites to play are football, baseball, and soccer.
Erin has seen firsthand how important the Breakthrough T1D One Walk is to children living with T1D, so when it went virtual due to COVID-19, she knew she needed to find a way to safely get people together to support Breakthrough T1D’s mission. Erin, along with other T1D mom Britt Bennett, joined together to create a “mini walk” in Tampa with their teams: Will’s Wolfpack and Team Izzie. The “mini walk” was a complete success; everyone was able to come together safely, raise money toward Breakthrough T1D’s mission, and walk to support all those living with T1D. Way to go!
As a mom caring for a T1D for more than three years now, Erin has overcome many hurdles and is always learning the best way to manage Will’s diabetes. Below you will find more information about Erin and Will, as well as some helpful, realistic advice about being a T1D caregiver:
Throughout your child’s T1D journey, what have been the biggest challenges you faced?
“Diabetes comes with so many challenges for both Will and for me as his parent,” says Erin. “Will would say his biggest challenges are having to eat after he is given insulin and also having to sit out of activities he enjoys when his numbers are low.” The frequent changes in insulin due to Will’s growth spurts is a challenge that Erin and John face, as well as many other parents caring for a child with T1D. As a parent, another challenge Erin encounters is controlling her reactions to Will’s blood sugar numbers and not take it as a reflection of her parenting; she wants him to learn that a high blood sugar doesn’t mean he failed or did something wrong, but instead is just a number that indicates he needs more insulin.
While adjusting to life with a child with type 1 diabetes, are there certain things you found that helped you better manage their disease? What about something that helped give you hope when you were just getting started?
“We have found that technology is the number one thing to help us manage. I don’t know how we would do it without his Dexcom,” exclaims Erin. Will does not always feel his lows or highs, so the Dexcom is essential, especially when at school or when playing sports. In the beginning, Erin says a food scale was very helpful because it allowed them to measure/weigh out Will’s food to learn carb counting and portion size.
What is the most important thing you would want other parents of children with T1D to know?
“For those of you who use a pump, this advice is for you: ‘When in doubt, change the site out!’ I will bail on a site if it doesn’t seem to be responding in the way I think it should, and will then give a manual injection to make sure his body is receiving the insulin that it needs. This will help prevent ketones from forming.”
Erin’s final piece of advice is to find a community for both yourself as the parent and for your child. “We become so focused on them that we forget we also need to take care of ourselves by getting support from people who understand.”
Breakthrough T1D has many support groups for those living with T1D and their caregivers – for more information, visit jdrf.org/t1d-resources/personal-support/. If you’re looking for local support in the Northern Florida area, send an email to northernflorida@BreakthroughT1D.org and we will make sure you get connected with other families, support groups, and events we host throughout the year.
What skills/lessons has raising a T1D child taught you? For a parent of a newly diagnosed T1D, how would you compare those feelings to now?
Diabetes has taught the Forehand family some positive life lessons: it is the ultimate challenge in mental flexibility because doing the same thing does not always equal the same result. Will has learned to thrive and live a fulfilling life, even with a chronic health condition. “The day Will was diagnosed was one of the worst of my life,” says Erin. “My world was forever changed, and I felt so angry. That immense sense of grief has definitely dissipated over these last three years.”
“Life has certainly been made harder and more complicated for Will since his diagnosis, but we could not be more proud of this kid. The strength we see from our son is amazing and inspiring. Watching him go to school, play sports, and hang out with his friends, there are times where you could almost forget that underneath the surface, he’s dealing this disease… but T1D always finds a way to remind us. It’s a never-ending fight that he takes head on every day.”
A True T1D Champion
We believe that because of parents and caregivers like Erin, the children living with T1D in our community are given the support and care they need to succeed in life and in managing their disease. To anyone caring for a child with T1D, please know that you are not alone in the sleepless nights and heavy days. Breakthrough T1D Northern Florida is here to help you and can connect you with a network of other T1D caregivers to share advice, struggles, and words of encouragement.
For more information or to submit someone for our “Heart to Heart: T1D Caregiver Spotlight,” please contact Brooks Biagini at BBiagini@JDRF.org.
