My daughter Aly was diagnosed with Type 1 (Juvenile) Diabetes when she was a mere 2 1/2 years old. This battle will never end for her as there is no cure for Type 1 Diabetes but we WILL do our BEST every second of every day to give her the best life she can have. This blog is here as a journal for myself and hopefully it also helps other individuals dealing with diabetes also.
When a child is diagnosed with type 1 diabetes the world that the child and their family once knew seems as though it will never exist again. Parents of a T1D tend to miss work more often because the main focus for the parents now is to make sure that their children are happy, healthy, and safe. The Family Medical Leave Act (FMLA) becomes a crucial part of the parents work routine as they have an increased need for time off work to become educated on this new lifestyle which includes daily blood sugar checks and insulin injections, recurring education classes, quarterly endocrine appointments, staying home with their child during sick days, and extra meetings with school staff to make sure their child's diabetes is managed well.
My daughter, Alyse, was two and a half years old when she was diagnosed with T1D. That was six years ago and at that time I was working outside the home as a Prescription Benefit Manager. I was very thankful for FMLA because I had become the primary caretaker of my child when it came to her diabetes. After her diagnosis, I had to take time off from work in order to teach other family members how to manage Aly’s blood sugars and insulin doses. I continued to work outside the home while using the FMLA benefit for three years until I made the decision that it would be better for her care and my sanity to stay at home. At home, I could be more readily available to go to her school when needed, take phone calls from the school nurse, make appointments at her school with the staff to discuss diabetes care, attend her endocrine appointments without feeling like I was letting my employer down. I could now explore my newfound passion of diabetes education and advocacy.
A year after my decision to stay home, I decided to open up an in-home childcare that would specialize in children diagnosed with T1D. At that time, I also began my second career as a diabetes advocate. When I started "Hope for Aly" (our diabetes education effort), I never expected to learn as much about T1D as I have to date and continue to learn daily. I now have my “9-5” job providing in-home childcare but also get to have my passion/hobby of diabetes education as a second career on the weekends. I am currently working as a Glu Ambassador to helping to spread the word about this diabetes support community which also helps to support research all from the comfort of your own home. I’m also looking into starting a non-profit in the Kansas City community that will focus on T1D support, education, and advocacy.
I know that parents who have a child diagnosed with T1D will be able to juggle everything from family, career, to sanity. I do, thousands of other parents do it, and newly diagnosed parents will too.