Living with diabetes is one thing, but when your child gets type 1 diabetes, it can feel like the end of the world. Having come from a family myself of a mother and a brother with type 1, I know what my mother went through. I wanted to find a voice that gives some real perspective to those of you who are navigating these rather interesting waters , so I reached out to my fellow blogging friend Tim Brand, to give some perspective to those of you who are managing a child with diabetes. Why Tim? Because he has TWO little girls that he manages their diabetes with (note the word with and not the for term). His blog can be found at bleedingfinger.com.
So get a cup of coffee (we all know thats what all parents need) and enjoy as I hand the mike to Tim and his wonderful family story.
Guest Post. Diagnoses of diabetes in children:
How did my wife and I deal with our 3 year olds diagnoses? How did we deal with the second daughter diagnosed 2 years later? I’ll walk you through what my wife and I had to deal with. How we dealt with
it, the positive and negative, what we did right and what we did wrong. There were struggles and victories. But the victories far outweighed the struggles. In it we learned something bigger, something of significance. Let me tell you the story and how we dealt with the diagnoses.
It was late March and we knew something was wrong; our daughter was drinking a lot and peeing a lot. After a week we called our kids pediatric doctor. He was a personal friend. He even said over phone it could be the onset of Type 1 Diabetes. He was right, my wife took her to the office the next day and their meter said “HI”. I was completely shocked when she called. She said we had to get her to the ER.
Her blood glucose was 769. That night we spent in a hospital room with her, I stared at the ceiling, trying to sleep.
The next day she was able to go home because her blood glucose was down and they ketones were gone, but not before a few hours of training. We met with the Endocrinology staff for training. I told the diabetes educator that I couldn’t do this, would they send a nurse to our house to take care of her. I was so numb; it was almost like I was in a movie. Sally, our diabetes educator was great, she immediately calmed my wife’s and I fears and that started us on a road to recovery. She was wise, the whole team was awesome, and they gave us just enough to get through the next few days. We still have the same team and have built a great relationship with them. At first everything was a big deal, we had to look at notes and were so freaked out over details. We put so much pressure on ourselves to get it perfect. That was wrong. Little things seemed like a big deal. 400blood sugars seemed to scare us silly. Then something odd happened, everything slowed down, things were no longer so hard.
I remember the first big thing we did was a picnic before we went to my niece’s graduation. She was valedictorian so we didn’t want to miss it. The picnic was fun; she was still on shots so we just bought food that was easy to figure the carbohydrates. Another turning point to getting back to normal was the 4th of July fireworks in our town. We went to a lookout park on a hill to watch them.
We took this picture of her running and playing. I think she was happy that she could be a kid again. Maybe that was the most important thing; she could be a kid despite her diabetes. We could let her have fun despite her diabetes.
Still there were times of grief and denial how did this happen to us, why did it happen to us. At some point in time, maybe a few months, we began to see a mission in life. I remember driving to the other side of the state for my uncle’s memorial service. I stopped by some other relative’s house on the way home and visited with them. I didn’t pay attention to the time and it was later than I thought. I got home expecting an angry wife, but to my surprise she was not. She had been working on a walk video for the upcoming Walk to Cure Diabetes.
That seemed to be a turning point. It gave us a chance to do something about a disease other than just managing it. I’m not saying advocacy and fundraising is the only thing, but it may be something to
consider. Somehow this was a positive outlet for our pent up feelings toward this disease. We felt like we were doing something and we were.
My wife did something else that was positive; she found some blogs on diabetes. They were written by other mothers and seem to be going through the same struggles and as her. They shared their stories,
the good the bad, the struggles and most importantly the victories.
Meeting local families was helpful. We met a family with 2 Type 1 children, I nearly passed out when he told me both his kids had Type 1. About 10 months later my wife called his wife and talked about having a second diagnoses. It was nice to have someone who understood. My wife also talked with and read
Our3Dlife.com blog, written by a mother who has 3 boys with Type 1. She has been and many others have been huge supporters of my wife and her blog sweet2thesoul.
The second diagnosis was more painful because there was no feeling like the world was spinning as the first did. We knew how to care for a child with diabetes. There was no denying it, ignoring it; we had to deal with it. But it was painful nonetheless. Seeing a child stricken with a lifelong disease is hard. I was on Twitter interacting with people in the diabetes community 6 months before the 2nd diagnoses, so I had a huge support base. Soon they encouraged me to write about it, and I did.
I think by sharing my fear of a third diagnoses with my oldest and what I did to calm her fear helped us all. I bought my oldest daughter, then 7 years old, a bear and put a doctor outfit on it and called it Dr Bear. It was a success. She loves the bear and many love the story.
However, I did things wrong. I didn’t make a schedule of how daily and weekly activities would work out. It’s a lot of work having 2 kids with diabetes. I pushed many things aside that were stressful, that included working on bills. I just went from memory and it caused a mess. I didn’t keep up on house work, the yard took a toll, the remodeling took a toll, it was dumb. I needed to make a schedule.
Going to diabetes conferences and meeting more people like us helped a lot. We went to the JDRF conference in Detroit and Friends for Life in Florida in 2012. It was an amazing time and nice to have a
family vacation despite diabetes. Those to events made or summer fun, it was a summer we took back from diabetes. We could do it because diabetes was not going to stop us. We had ways around diabetes,
ways to manage it even if we drove for 12 to 14 hours and had to large bags of diabetes supplies. We did other family activities that summer, we had fun. This summer will be even more fun. Bet on it.
Having a child diagnosed with diabetes is not easy, looking back and mourning over the way things changed is not good. Learning and developing a plan for everyday life is what you have to do. A friend
wrote a book called “Kids First, Diabetes Second”, it’s great for newly diagnosed families. That and other resourses will help you develop a plan, a skill set to manage diabetes. Then you will be back to living life.
You will have some struggles along the way; sleepless nights, tears and pain; but, you will have victories, you will meet amazing people and do amazing this in the face of a lifelong disease.