Shadow Children

Lyrical

 

Just a few minutes ago, I found myself walking down the road between our craft distillery and the house that I grew up in. As often is the case, I had a tune in my head.  Today that tune was "Out of Control" by U2. As I got closer to the driveway of the house, I smiled as a distant memory popped up. When I was young, I once decided to rewrite the lyrics of "Out of Control" so that the song became an ode to my younger brother, Jon, and diabetes. I believe the title became "My Brother is Low" and the rewritten lyrics went on to explain how my brother's blood sugar was low and what needed to be done.  I know I wrote my rewrite down, but I am sure those lyrics are lost forever.  Would be fun to read them again today, some 30 plus years later.

Banting the Incredible Service Dog

 

Nearly five years ago, my brother Jon welcomed a new member into his family; Banting a beautiful chocolate lab. Those of you who have some knowledge of the history of diabetes, will recognize that Banting is named after Dr. Fred Banting, who along with his colleague, Charles Best, discovered insulin. This is most fitting because Banting is not just a pet; he is a working, service dog. Since he was a puppy, Banting has been trained to sense changes in my brother's blood sugar levels and alert Jon to highs and lows. Banting displays a variety of signals to Jon that communicate whether the issue is low or high blood sugar. Not only is this amazing, it actually works!  Banting and Jon are constant companions, with Banting going wherever my brother does.  As I write this, Banting is with Jon in Texas. He is the most well-traveled dog I have ever known and has logged thousand of miles in both cars and airplanes. Banting and similar service dogs really prove that dog's our man's best friend
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Published!

After three years, I am happy to report that Shadow Child; My Life as a Sibling to Chronic Disease has been published! I am very grateful for all those who have helped make this book possible including my wife, mom, brother and kids! I also would like to thank Julie Laing, who edited the book for me. If anyone is ever looking for an editor, I would certainly recommend working with Julie. It’s very exciting to see this work out, and to be able to promote it. I sincerely believe that this book will be helpful for many siblings of brothers and sisters undergoing the challenges of chronic diseases. So, as they say in the movies, the adventure begins!

Adding Photos

I started scanning old photographs today and adding them to the Shadow Child photo album.  I only have a few uploaded now (too nice to be indoors today), but check them out.  I'm starting with photos of me and my  family before my little brother was born.  Stay tuned for more!

Call from Dad

My Dad called me last night around 9 PM.  He said he was calling because he had just finished reading a draft of Shadow Child.  He wanted to tell me that he thought it was excellent and could not wait to see it in print.  Those were great words to hear from a man I respect so much!  Energized!!

Thirty Three Years of Advancement in Diabetes Tech - Part 3

Even the way people with T1 Diabetes eat has changed since my brother’s diagnosis. Thirty years ago, diabetics like my brother used American Diabetes Association food exchange books with food lists and carbohydrate values. Food scales were used to learn to measure proper amounts of each of the allowable food groups. Meals were prescribed, and the insulin dose was fixed based on those meals. This meant that once the insulin was given, my brother had to eat the meal that was planned, even if he was not hungry or did not like the food. Today, his diet is much less prescribed. Insulin can now be taken before or after meals, or continuously in the case of insulin pumps, and regulated based on what is actually eaten rather than prescribed meals.  

Thirty Three Years of Advancement in Diabetes Tech - Part 2

Monitoring my brother’s blood glucose levels in the early 1980s meant having him pee into a small plastic container and putting a test strip in the urine for a minute. This monitoring was not incredibly accurate, giving only a range of glucose levels in the urine (not the blood). To obtain an accurate blood sugar reading, diabetics were required to visit the hospital for substantial blood work.

Think about that!  Today, blood glucose monitors are now commonplace, increasingly accurate and require less and less blood sample. The advent of these machines has resulted in better diabetes management and fewer trips to the hospital blood lab.

In addition to these self-monitoring machines, today several continuous glucose monitoring  systems are available on the market.

Thirty Three Years of Advancement in Diabetes Tech - Part 1

My brother was diagnosed with T1 on January 11, 1980. In the past 33 years there have been so many amazing changes in the technology available to families for management of diabetes. For example, in the beginning, my brother’s treatment involved the administration of two types of insulin, regular insulin and neutral protamine hagedorn (“NPH”) insulin. NPH insulin was longer acting than regular insulin. Both types of insulin were derived from either cows or pigs. In the 1980s, breakthroughs in recombinant DNA technology resulted in the production of human insulin. Today’s insulin is purer and morepowerful than ever. Insulin also comes in several different longer acting and rapid acting forms.

European T1 Vacation

One of the big milestones in my relationship with my brother was our two week trip through Europe. Just before I began my study abroad in Bath, England, my brother and I flew to the continent and traveled through Switzerland, Germany and the Netherlands. I was 20 and Jon was 17. It was the first time we were alone and thousands of miles from home. For me, it was daunting to be the older brother and technically "in charge" and "responsible' for my younger, diabetic brother. Of course, at age 17, Jon was already a master at taking care of himself and managing his diabetes. By the end of the trip, we had both grown a lot and were proud at our accomplishment. Jon was reaction free during the two weeks, and had no real
highs either. We kept lots of snacks in our pockets and backpacks and dealt with the adventure as it came to us.

Some Common Emotions Experienced by Siblings

Healthy siblings of children with chronic illnesses such as diabetes seem to experience several common emotions while growing up. These include fear, jealousy, resentment, and being overburdened with responsibility.  Fear takes many forms. There is fear for the sibling, knowing the disease places them in daily danger. There is also fear for oneself - will I get sick too? Fear of the sick sibling also occurs.  What other forms of fear have you, as a healthy sibling, experienced, or you as a parent experienced?