I met Linda online at least a year ago and although our children are different ages (hers is in high school and mine is in grade school), we connected with one another. Linda and I keep saying we are going to meet for a glass of wine…one of these days! You’ll see below why I’m seriously booking a ticket for her dream vacation.
I invite you to read about Linda, and then visit her blog A Cure for Tyler.
I’d like to introduce you to Linda of A Cure for Tyler.
Tell me something about your child.
Tyler is an energetic and enthusiastic military nut. He loves the history of the military and weapons. He can tell you what kind of gun a character on TV is using just by sight. Before his diagnosis, Tyler had plans of joining the military to serve our country. While he is disheartened that he cannot join now because of the type 1 diabetes, he has broadened his career choices to include other civilian weapon options and a possible career in video game design.
What is your child’s favorite 15 gram carb (or less) snack
Peanut butter balls. It’s a recipe that was given to me by Riley Hospital for Children 3 years ago. It’s peanutbuttery deliciousness!
- 8 Tbl cornstarch
- 8 Tbl peanut butter (we use creamy Skippy)
- 1 cup Rice Krispies
- 1 Tbs chocolate chips
- 2 packets of Equal
- 2oz. cold water
Put all ingredients in a bowl and mix together. Form into 8 round balls of equal size and refrigerate.
Each ball counts as 1 Carb and 1 Fat. They are easy to make and tasty, too! He also uses this during PE and sporting events when he goes low. Other 15 gram carb or less snacks he likes include scrambled eggs, string cheese with red apple, and red bell peppers.
How do you manage diabetes?
We use the Animas Ping Insulin Pump. We are waiting for the FDA to approve the new CGM-Ping pump so that he can have the CGM sensor incorporated into his pump. That would be fantastic. The pump is currently in Europe and Canada and we will be excited when it finally gets to the USA!
What do you know now that you wish you had known at diagnosis
We didn’t have a positive experience with our diagnosis—it was rather a night terror due to one doctor with no bedside manner. It would have been nice to know that type 1 diabetes is manageable instead of being told that our son would have his feet cut off, go blind, and die before he grew old due to diabetes.
Diabetes is a part of Tyler but it doesn’t control him or define who he is. He can be anything he wants to be, and do anything he wants to do. A type 1 diagnosis doesn’t have to be a death sentence and I think knowing this upfront could have made the difference in planning his first few weeks as an enlightening experience instead of dreading what happens next.
What has been the biggest challenge?
The biggest challenge for me has been educating people about type 1 diabetes. So many people don’t know the difference between type 1 and type 2 and assume that type 1 is related to overeating or eating too many carbs. Most people don’t know what really happens to a pancreas in type 1.
How do you and your husband maintain your relationship?
From the get-go we have been a team. All three of us. We are all in it together. The 3:00 am checks are difficult, but we have a schedule in place and it rotates so that one week I have to get up four nights and the next week he does. Faith in God, Hope for a Cure but most of all Love for Tyler gets us through.
What have been your challenges sending your child to school? Triumphs?
When he was first diagnosed at age 12, we had a fabulous middle school-junior high school experience. The principal, school nurse and staff were on the ball and supportive. The transition to high school was difficult. There was no school nurse and the designated health aid was chosen because her husband was a type 2 diabetic. We had a lot of bumps in the road his freshmen year and I am hoping that his sophomore year goes better.
We do have a supportive principal and that helped get me through the year. His high school also wasn’t aware of the laws or federal funding laws for Section 504. After several attempts to get one for Tyler, the school is now aware and up to date on IDEA 2004 and Section 504 accommodations thanks to me. I am pretty proud of this accomplishment!
What sports/activities does your child do and how does it work with diabetes?
Tyler loves to play basketball and golf. So far, neither sport has been a problem. But for contact sports in PE, he takes the pump off.
What vacations have you taken and how did you deal with diabetes?
We have taken yearly vacations since his diagnosis. I plan and make sure we have enough supplies for the week and then I double what I think we’ll need. Better safe than sorry! Tyler carries his meter and an emergency kit filled with all supplies & snacks. I also carry an extra meter, supplies & snacks. Our cars also carry water and non-perishable food items in addition to our emergency/first aid kit.
How do you find time for yourself?
My peace and quiet comes in the wee hours of the morning. The time between when Tyler goes to bed and usually before the 3:00 am check. There have been times when I’m too exhausted to sleep and end up not going to bed until after the 3:00 am check, but I can usually get through the day on four hours of sleep.
I love to read whether it be via a book or on the Kindle. I’ve often told my husband that my dream vacation would be to go to a hotel with room service and a stack of good books and stay for a week; that sounds better than any spa vacation to me!
What have you done to help your son become independent in his own care?
I think it helps that Tyler was independent in giving his own shots before his discharge from the hospital. We still help with carb calculations on restaurant food or high carb meals such as pizza, but for the most part Tyler has taken an active role from the first day he was out of ICU. He is truly an amazing kid!
One day at school, his pump beeped out of insulin and then he realized that he didn’t have a cartridge to draw up insulin for his pump. His health aid freaked out; Tyler did NOT. He stayed calm and focused and took an insulin syringe and drew up his insulin and filled out the old cartridge to get him through the day. He did exactly how I would have done it. I am so proud of him. He had the critical thinking skills so often lacking in today’s youth and analytically problem solved for a successful solution. Tyler ROCKS!
What research organizations do you support and why?
JDRF I’m a JDRF mentor and advocate. There needs to be a voice for downstate Illinois type 1 diabetic children and support!
Juvenile Diabetes Support of Central Illinois (JDSci) This is a support group in Central Illinois for local community involvement. I would like to see this group grow and become involved in C-U and the rural community for type 1 education and health fairs.
American Diabetes Association (ADA) The Decatur office has been really supportive and offered tremendous help with 504 issues.
The Faustman Lab I believe in their research and the fact that they are in human clinical trials. They are not afraid to stand up to the pharmaceutical companies and I believe they will find us a cure!
How do you deal with tough diabetes-related questions from your child?
Logically. Tyler knows he can come to me for anything. He usually tries to figure out things himself, but if it is particularly troubling for him, he knows that we will find a solution together.
How has diabetes affected you financially? Have you been successful in getting the insurance coverage you need?
It has been a strain, especially in the beginning. We finally were able to get on All Kids and pay decent premiums ($150/mo). All Kids has been a God send. Recently though, we received a letter telling us that All Kids would be dissolved and were told we need to find other health care insurance. Diabetes is the reason why we needed insurance in the first place; but now this program is going away. We hope that we can get affordable health care insurance in the next 6 months; but it is highly unlikely.
Thank you Linda for sharing your family’s story with diabetes. Readers can meet other D-Moms and D-Dads on Mondays.