Children with Diabetes
By Tom Karlya
Jeremy plays varsity baseball, he wears an insulin pump. Sam is in his second year of college, he teaches younger ones, and he wears an insulin pump. Kathy is in love with Nick Jonas, and she is on insulin shot therapy. Jesse is a high school senior he wears a pump - and sometimes he wears a continuous glucose monitor. They came from just about every state across this united land. They came from quite a few countries, as well. They laughed, they cried, they met, they became reacquainted, they worked, they played and they learned … oh how they learned.
It's July and we are in Orlando for the Children with Diabetes (CWD) Friends for Life (FFL) conference, marking the tenth year. I was there at the first one, I was at this one, and so many conferences in between. I walked into the conference hall for the first meeting where all participants would be together at once. It was a sea of people, having swelled in the last ten years from about 500 people to 3,500 people. Imagine viewing over 800 kids checking their blood sugar all at once before breakfast. Imagine!
Tears just flowed down my cheeks.
There is uniqueness about Children With Diabetes. These conferences provide knowledge. They provide an outlet where families can learn firsthand that they are not alone. The children meet others like them, and so do their parents. Perhaps they will do as the title suggests and become friends for life.
A few friends meet. Hannah hugs Monica and Sarah, who are sisters. One of the three has diabetes. It doesn't really matter who does and who does not. They are together at this one place and time. They met years ago. During the year they stay in touch via Facebook and text messages. When apart, they live for the time they will see each other again.
Children with Diabetes, the company, is owned by Johnson & Johnson, a really big company. CWD was founded by Jeff Hitchcock, not a big company but in reputation, a really big man. Why is that important?
It is important because CWD doesn't feel like it's owned by a big company. The people involved make others feel like - dare I say – family? No one could ever understand what a family goes through who has a child with diabetes. I mean it is ‘just diabetes,' right?
To those who know, no explanation is needed and to those who don't, all the explanation in the world isn't enough to truly explain. Truth is, it isn't ‘just diabetes.' It's a world that scares the hell out of all of us as parents. It's a world where no parent should watch their child, or their children, suffer daily.
We don't need to be told again and again that it could be worse; it could be this disease or that disease. We don't need to be asked again for the millionth time, "Will they grow out of it?" We don't need to hear from someone that it's really not that bad to take a few shots. We don't need to be called up to the school. We don't need to worry if the falling down in soccer, or football, or lacrosse, or playing in the yard is part of their activity or are the collapsing from a hypoglycemic reaction - and we hold our breath until they get up again. We don't need that.
It's these times. It's the sleepless nights. It's playing the diabetes police to our kids. It's the feeling guilty on playing the diabetes police to our kids. It's the constant and burning wish that our lives to be normal again.
OUR LIVES ARE NOT NORMAL.
But we don't live like there's a problem, do we? The feelings of fear, anxiety, guilt - and did I mention fear? - are kept inside though, aren't they? They are kept inside because we want normal again, or as close to normal as can be, for our kids and for us too. So we smile, we try not to overact when things go haywire, we smile when a relative we love says something stupid like "So you just cut back on their sugar, right?' We cry alone, we cry in silence, but most of all we move on. Most people just do not know what we go through because we do not live our lives in defeat. We try to stay upbeat. But still, deep down inside we all have the fears and showing them outward is something we work real hard just not to do. But they are there, we all know they are.
So during a week in the hot summer month of July, we are all together in Orlando, Florida. In a place where no explanation is needed and we get one week where just about everyone around us "gets it." Together we grow from the knowledge and inspiration of professionals, experts, and those who have made a difference. Kids learn and so do the parents.
Two new friends walk down the hallway of the huge Disney complex holding hands. One is from Florida and the other is from New York. One wears a pump from Medtronic, one wears a pump from Animas. They both are in shorts and they both are acting a bit silly. Kids with diabetes are still just kids.
On the final day of the conference there is much sadness saying goodbye but much enthusiasm that the batteries are recharged ready to face the world with what was learned. A new understanding that we are really not all alone out here and there are others who fully understand. We all met someone during this week. We bonded. We are Friends for Life.
I'm a Diabetes Dad.
dLife's Daily Living columnists are not all medical experts, but everyday people living with diabetes and sharing their personal experiences. While their method of diabetes management may work for them, everyone is different. Please consult with your diabetes care team to find out what will work best for you.
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