I am SO honored to have my friend Megan share her experience with Type 1 Juvenile Diabetes. Her beautiful daughter, Maeve was diagnosed several years ago when she was just a toddler. Megan and Maeve have done an incredible job spreading awareness and educating others of the devastating disease. Today Megan is sharing 10 things she feels other parents need to know about Type 1 Juvenile Diabetes.
- In hindsight, my child’s symptoms were: I look back at pictures and Maeve looks
frail – like slow steady weight loss. She was probably peeing more but she was in
diapers so I didn’t really notice until the end when she was peeing through diapers. She
was definitely drinking more but again I rationalized it saying – it is hot, we are in Florida.
- The specialist who helped us the most: was the 2nd pediatric endocrinologist we saw at CHOP. He was super progressive and put Maeve on the pump right away (6 weeks after diagnosis) when other docs were telling us she had to do shots for a year. Another doctor said she wouldn’t consider it until she was 8! My advice is always get 2nd, 3rd and 4th opinions!
- The specialist we didn’t expect to need: was a marriage counselor.
- It took us this long to get a diagnosis: It took 22 days to get a diagnosis. We were at the pediatrician or urgent care 7 times in 22 days with varying diagnosis from the flu, to a sinus infection, to mono. Maeve was only diagnosed because she slipped into a diabetic coma overnight and when we rushed her to the ER they checked her blood sugar and it was so high the meter couldn’t read the number.
- The biggest financial expense because of this medical condition is: ALL OF IT MONTHLY! The supplies that a Diabetic needs to survive are endless: insulin, pump, syringes, lancets, testing strips, alcohol swabs, iv tape, IV prep, pump supplies, CGM supplies, sensors, bags to carry all of this stuff!, glucose tabs, juice boxes, ketone strips, glucagon kits.
- The organizations that helped us: Juvenile Diabetes Research Foundation (JDRF), The Diabetes Research Institute (DRI), Children with Diabetes (CWD), and probably most importantly the DOC (Diabetes online Community).
- I wish my friends and relatives knew: How hard we have to work to make it look like “no big deal”. How hard to have to fight to prevent short term and long term consequences. How sometimes it doesn’t matter how hard we work – it is all for naught.
- Our ray of hope: TECHNOLOGY improving quality and quantity of life.
- Our biggest cheerleaders and supporters: Our family and friends – both local and far away and the Brave Maevens – those who follow Maeve on FB.
- I wish I had known: I wish I had known that I would get to a place where I could say “Thank you, Diabetes. Through you I have seen kindness and generosity beyond measure.”
Megan shares her heartfelt thoughts on the Brave Maeve Facebook page, which is a
wonderful resource for any family affected by Type 1.
Maeve, her family, friends and countless supporters participate every year in the local
Diabetes walk to raise funds for research leading to a much-needed cure. They always
have the best shirts for their team, and this year is no different. Please help them get
one step closer to a cure. Their t-shirt sales are a large part of their fundraising efforts.
Shop here to support their fundraising efforts for the local Diabetes walk.
Don’t miss any of the other articles in this series. We address a multitude of medical conditions.