Living with Juvenile Diabetes

GRAHAM'S STORY
Living with Juvenile Diabetes

WALK FOR A CURE
by Sherri Stoltz, March 2000

May 11, 1999 is imprinted in my mind like the birth of my children. On this date a major change would happen in our lives, one we all will never forget. About two weeks prior to this date, we had quite a heat wave come through our town. The temperatures were in the high 20's. My children spent all day outside playing. Graham, my 4-year-old son, seemed to be loosing some weight and drinking excessively. The more he drank, the more he would go to the bathroom. We would change his sheets at least once a night. This became quite an obsession. We inquired at his school if there were any problems. There were none. His pleas for something to drink became desperate. This is when we realized that these were not the pleas of a boy thirsty from a heat wave. This was his plea for help. We took him to our Family Doctor at 10 a.m. May 11, then after some questions and blood tests, by 4 PM the verdict was in. Graham had Juvenile Diabetes! Those two words bolted through my head like a cannon. Glen had grown up with a friend that was a Type 1 Diabetic. So he was already aware of the needles and food issues. That still wasn't enough to prepare us for what we were about to learn. They were expecting him at the McMaster Hospital Emergency room. This is where we would begin our road to diabetes education.

When we arrived, his blood sugars were tested. Normal blood sugar ranges between 4 and 8 mmol/L. He was 33 mmol/L! We were very lucky that he was not sick or even unconscious. I wish at that point I could say that Glen and I were feeling strong and confident, but I would be lying. We were both trying to hold back the tears, for Graham's sake. Inside we were a wreck! As parents of a diabetic, we now had added responsibilities for our child. As you can imagine, we were full of questions: How did this happen? What should we have done differently? Since it is linked to a combination of environment and genetics, there was nothing we could have done to prevent this. Insulin injections were now a requirement to sustaining his life and while Glen and I were in his room learning this, Graham was being carried back from the playroom by his Grandmother. He was very tired, and extremely pale. He was having a insulin reaction! Luckily enough he was still conscious! If left without treatment, he could have been seizing or even unconscious! We gave him a juice and tested him. 3.2 mmol/L! What happened? Being new at this way of life, It took us a few minutes to realize that we had missed his snack! Four days in the hospital with the support of our Specialist, a Dietitian and some Nurses, only to learn that diabetes does not come with a instruction booklet. It is all trial and error. We were terrified to leave the hospital with our own child.

Any parent would agree that they would do anything to free their child from pain and sorrow and protect them from harm. This is easier said then done, for the pain is preventing the harm! The more I learned the more overwhelmed I felt. The first injection was not so bad. I'm sure Graham was thinking that once he had this one needle, he would be cured. Little did he know that this was just the beginning. That's when things got harder. When it was time to give him his second needle and so on, he would panic and try to get away, crying "Why are you trying to hurt me Mommy? Why? Please don't hurt me anymore!" After about two months, the panic and running subsided to rolling over, crying and afterwards a large hug to comfort him.

Our life seemed very regimented. He was on a food plan, that meant he had to eat a exact amount of carbohydrates and at specific times of the day. He was given the option to eat whatever he wanted, whenever he wanted, but this meant giving him another needle. (He chose to do without.) He was beginning to rebel at this new lifestyle change. He would refuse to eat, or only eat half his meal. To help him deal with this emotionally, he had a cotton stuffed doll, a doll he called Captain "D" the Diabetes Dude. We had daily rituals of injecting needles and planning meals for his hero. Captain "D" was tough and brave and so strong. He could take the pain. But could Graham? We now had to plan and prepare for everywhere we went. It was extremely difficult to let him out of our sight. Afraid that something may happen when we are not with him. Over hearing one of his classmates say, " I don't want to go near him, cause I might get it to! And I don't want to get needles!" My heart once again dropped. It was important for us to educate the people around him to avoid prejudice. Graham's family, friends, teachers and classmates have been very supportive. We have all learned how to be diabetes buddies.

Five months ago, we put Graham on insulin pump therapy. An electronic pump, the size of a pager. This is connected to a tube that is injected into his abdomen. Eliminating allot of highs and lows, along with allowing him to eat without getting an injection. Under our supervision, he just pumps in the amount of insulin needed to cover his food. He has to change his site every three days, eliminating 8 injections on average. At a small fortune, (no thanks to our Insurance Company) we have all been given a small piece of our normal life back again. This by no means is a cure, but he is now able to eat whenever he wants, and what ever he wants. So along with learning his ABC's and counting his 123's, he is learning to count carbohydrates.

It has been 11 months now and each injection as hard as the last. Since the day of diagnoses, Graham has had 2933 sharp objects injected in him. We have been coping and educating each other with this chronic condition for almost a year now. Fortunately, we have not experienced an extreme high or low to a point that we were not able to rectify it. However, a week before Christmas, Graham had picked up a flu virus. He was sick to his stomach, and it was impossible to give him sugar orally. So in order to prevent an extreme low, he needed to have sugar intravenously. To the hospital we went, making him suck on a lollipop and talking to him to keep him awake. This was only one of those experiences that you hope never happens. But knowing deep down that it's not possible to go through a lifetime without being sick. I was just so glad that we safely got through that ride on the Diabetes Roller Coaster.

Day #3 set change time. At Graham's request Daddy puts a pillow over his eyes while I inject the infusion set. Still crying like the first time, he lays stiff for a few minutes in order to get used to the new injection site. This is when we hug and he asks questions. " Why am I the only one in our family to have Diabetes? Mommy, do little baby's get diabetes too? Why can't I use a breather thing (inhaler), or mommy, you know when Maggie and I are sick, and you give us some medicine in a pill? Why can't I have that instead of needles?" It saddens me to answer these questions. But we have found that it is best to be up front with our children, explain to them exactly what is going on. Especially since he has to deal with this for his lifetime. I really think they understand a lot more then what we give them credit for. Along with asking Santa for a new toy and a Game Boy, Graham asked for a cure for Diabetes. My 3 year old Meaghan said, " Do you think Santa can fit it on his sleigh? "

I have learned allot from this change in our lives. It has brought our family closer together. And it has made me realize that our health is most important. I commend those that volunteer their time to supporting Juvenile Diabetes. Although Graham says he is going to be brave and courageous like a police officer, we can only hope to receive the one gift that Santa couldn't bring, "The wish for a CURE"!

"Walk For A Cure",

Hamilton - Sunday June 9th 2002
Start & Finish at the Ivor Wynne Centre, McMaster University Hamilton
5 or 10 k routes through Westdale Village to Princess Point, and back.

We are pleased to have Dr. Peter George, President of McMaster University as the Recruitment Chair for the 2002 Walk to Cure Diabetes in Hamilton. We look forward to working with Dr. George, his team and the many other local corporations whose support is critical in making the Walk such a great success. You can join us too!! Please call 905 333 4660 or e mail burlham@jdrf.ca for information on how to enter a corporate or family team.

JDF Burlington Hamilton Chapter

Canadian Diabetes Research Foundation

National Diabetes Foundation

Loree's Genealogy Page

March 2002