I hadn’t thought much about unconditional love until earlier this week.  It had never come up, never been forced upon me, never required that I prove it.  I had, possibly like most parents, simply taken it for granted.

Each weekend I looked forward to spending my spare time with my 7 year-old son.  Teaching him about sports, talking to him about anything, including him in my daily life.  Given that my enjoyments simply coincided with his, I was never required to think deeply about why and how much I cared.

Earlier this week however it all came surging forward and as I spent 3 days trying to navigate half the globe to get to a small hospital in Thailand to see him I had the time to really contemplate the concept:  unconditional love.

My son and my wife had been spending their traditional summer back in Thailand, visiting with the in-laws and assimilating him into Thai culture.  They had been gone almost 5 weeks when we found out her mother was terminally ill with cancer.  The news obviously took my wife for a profound loop and having lost her father very suddenly while she was out of the country, this time she had a chance to spend time with her mother before she left us.  We decided that she and my son should spend a few more weeks in the country helping to take care of her mother and saying their last goodbyes.

I, on the other hand, was in dire need of a simple vacation and with no family at home decided to take off down to El Salvador for some surfing with friends.  While sitting in the departure lounge I called back to Thailand to see how things were going.  My wife and son were fine and her mother was spending time going through a lot of tests at the local hospital.

“You’ll be amazed at how much Leighton is growing,” my wife mentioned.  “He’s eating everything in site and everyone says he’s getting so much taller.  I probably don’t see it because I’m around him all the time.  All I’m seeing is that he’s getting skinnier and skinnier.  It’s like he’s stretching out.

“And he’s drinking water all the time as well.  I’m trying to get him to slow down but he complains about being thirsty.  He’s drinking so much he has to pee every hour or so.  It’s crazy.  He even pee’d in his bed three times last night.”

“Hmm, that doesn’t sound really right to me.  If he’s peeing that much he may have a bladder infection or something.  You should take him over to the local clinic and see if they can give him something.”  I had no concept as to what may be going on with my son, but I knew that having to pee every hour was a bit odd.

“Yes, I was going to do that this morning.” With the time difference between the US and Thailand, they had just woken up and I was stepping onto a red-eye flight down to Central America.

“Ok darling, I’ve got to jump on a plane.  I’ll call you when I arrive and see how things are going with him.”  I didn’t give it much more thought and boarded the flight.

When I arrived and settled into my room I gave them another call.  It was now late at night their time and my wife answered the phone a bit more concerned than she had been over the last week.  The clinic had referred her and my son to the local hospital where they had run some tests.  The doctors had expressed that it may be more serious than we had originally thought.  As my wife had to take her mother to a regional hospital 3 hours north early the next morning, the local hospital arranged for her to get my son checked there as well.  She gave me a cell phone number I could call while she was spending the next few days up North.  I told her that I’d call again mid-morning the next day to find out what the hospital said.

…to be continued

Author: James Hirsch

Review: Very good

James Hirsch has been surrounded by diabetes his entire life.  He was diagnosed with Type 1 at age 11, his older brother is a leading diabetologist, and as he was researching this book, his 3-year-old son was diagnosed with Type 1 as well.  It would be very easy to expect him to write a passionate portrayal of life with diabetes.  But Mr. Hirsch is also a well known and respected journalist for the New York Times and Wall Street Journal and as such he is able to combine his own life experience with well documented and researched thoughts and information about the state of diabetes in our society.

Mr. Hirsch’s personal journey was a comfort as I read his book on the plane flying to join my newly diagnosed son in the hospital.   At the time I knew very little about diabetes and held all the typical fears associated with knowing your child is suffering from a lifelong and potentially debilitating disease.  Mr. Hirsch’s ability to convey his own emotions associated with tending to his son as well as his ability to place the disease within the larger aspects of his own successful life (it just becomes another aspect of you), helped to calm my fears and set me down a path with a set of principles that I too hope will help my child excel.

Along with his inside story however was Mr. Hirsch’s excellent detailing of the history and research behind the disease.   I had no idea how brutal this disease was just a half century ago and had no idea the endurance exhibited by my previous generation.  In detailing the history, Mr. Hirsch also provides a very straightforward explanation of the causes and management of diabetes.  By the time I had landed I was well armed to question the doctors that were looking after my son.

The final few chapters of Cheating Destiny start to take on more of Mr. Hirsch’s own views and personality as they explore the current research and politics surrounding the disease.  Science and academia are rife with political behavior and I commend the fact that Mr. Hirsch did not shy away from stating his own views of the issues.  Not everyone will agree with those views, but I feel it’s always better to have the viewpoints of the author be explicit so you’re sure where they are coming from.

For a parent of a child with diabetes or anyone who wants to learn more about it, this is a book that will enable you to get emotionally drawn in while at the same time gaining a true understanding of the magnitude and manageability of this disease.

As a parent it is your responsibility to ensure that the school is willing and capable of helping your child manage their diabetes.  If your child is in a public school in the US, they are required to provide you with services that ensures your child can experience school like every other child.  (Learn about a 504 plan)

Here are some initial steps that we took to ensure our relationship with our school was a positive one:

1. Tell Your School:  Seems obvious, but this is the first step.  Walk into the administrative office and let them know that your child has been diagnosed with Type 1 diabetes.  They are either going to know immediately what you need to do, or they are going to be lost.  This will help you understand how active you’ll need to be.
2. Meet with your Nurse: We then went to our district nursing office (as the nurse to our school wasn’t there).  At the office they explained all the forms we needed to get filled out so that the nursing staff would understand what their responsibilities were.
3. Meet with your Teacher: Like your administrative office, your teacher is either going to understand the situation immediately or need your help.  Regardless, you should put together a single page document that outlines what Type 1 diabetes is, what the dangers are, and how to look out for signs of trouble with your child.  It will be your teacher that is next to your child day-in and day-out.  It is absolutely necessary that you help them learn about this disease.
4. Document Requirements: Your doctor will have given you an insulin routine to follow and guidelines for insulin dosages and snack restrictions.  You’ll need to write these requirements down in an easy-to-read document that can go to your nurse(s), your teacher and any other school personnel looking after your child.  (These documents are also great to use for babysitters, parents and family, as well as close friends who spend a lot of time with your child).  It is critical to also document all the telephone numbers where you can be reached in case something should happen.
5. Be There: We spent the first few weeks with one of us meeting our son at lunch time to ensure that he ate his meal and got his insulin injection.  Because our school has a rotation of nurses, we spent time with each one and explained our son’s situation.  It took a while, but pretty soon, we became just observers and eventually handed off responsibility to the school.

We were “fortunate” in that there were a couple of other children at our school with Type 1 diabetes (even another in our son’s class!).  This made us more comfortable knowing that the school was experienced, but it also helped our son as he was not alone on his trips to the nurse’s office each day.

It was, and still is, scary handing over such a major responsibility to someone else.  But like with all of the life-aspects of diabetes, we felt it was important for all of us to lead as ‘normal’ a life as possible.  Being proactive, helping educate your school and seeing the management in action will help you eventually let go.