What was it like when your son was diagnosed?
Kendall was diagnosed on March 22, 2003, he was 18 months old. Today, this date is affectionately known as his diaversary. I have found most parents never forget the exact date and time when their daughter/son was diagnosed with type 1 diabetes. Kendall’s warning signs went unnoticed as we assumed the strep throat and other flu like symptoms he was experiencing were normal for a child his age. I remember a trip to his doctor for a routine checkup that generated a blood test with a 400 glucose reading. His doctor felt his elevated number was the result of something he must have eaten earlier. My mother, who worked as a nurse’s assistant prior to retiring, sounded the first alarm that follow up care was warranted after we advised her about the number of diapers Kendall was going through and his constant thirst. Thank God we listened to her and took Kendall to the emergency room where he was eventually diagnosed.
When the doctor looked at me and said my son was type 1, I thought this form of diabetes must be better than the other type (I did not know the difference at this time) and surely it was something that is treatable or, he would eventually outgrow. Keep in mind Kendall was not yet two and could not verbalize just how miserable he must have been when he felt high’s or lows. CGM’s and insulin pumps were not an option for someone so young. It was during this time that I fell in love with my wife all over again. What a trooper she was….although her heart was breaking she kept a very positive outlook on everything and began her life of not sleeping, and doing all of the things necessary to care for a child with type 1. She did all of this while doing everything in her power to make Kendall’s life as normal as possible. Kendall and I are so lucky to have her in our lives.
What has been the biggest struggle of helping your child adjust from middle school to high school?
When Kendall was in the 5th grade we made a decision to leave public school and enroll in a charter school. For whatever reason, our public school Principal would not approve our 504 application. The Charter school proved to be a great decision as the smaller school environment allowed Kendall to have the care necessary to keep him healthy. By middle school Kendall had become a pretty basketball player and was 1st team point guard. When he was in 8th grade his team won their division championship and Kendall was getting recruited by several public high schools. He did all of this while maintain an A+ average.
Enter the summer of “hell”….although we loved the close knit community of the charter school we agonized over whether it was best to keep our son in a safe space or allow him to be exposed to a more diverse population and environment. The real world as we described it. To make matters worse, Kendall was leaving this decision mostly up to his parents. Many of our friends and relatives felt our decision was based on sports only. In public school, Kendall would be able to take AP classes and play basketball in front of larger crowds with more exposure to college coaches. Little did everyone realize, basketball was only a very small part of our decision. Like all parents, you struggle everyday with what is comfortable for you versus what is ultimately good for your child. These decisions are more paramount when your child has T1D. We eventually decided to enroll our son in public high school and said good bye to our close friends at the charter school. Kendall recently turned 14-year-old it was time for him to be more independent. His growth as a person was all that was of interest and would be the driving factor behind our decision. Our biggest struggle was in just letting go and trusting Kendall to make more decisions about his daily care. This included communicating to his new friends he was T1D and teaching them what to look for should he ever experience life threatening highs or lows. He also had to endure peer pressure as he needed to remain focused on the appropriate diet and not hesitate to “test” in front of his new friends. Playing basketball also was an adjustment, as dad or mom would no longer be at practice to provide the appropriate nutrient at the proper time to maintain maximum performance. Most importantly, Kendall had to learn to “test” prior to any class test and stand firm on his right not to take the test if his glucose reading was not in the proper range.
Has your son taken on any more of aspects of his diabetes management since starting high school?
We do not know if Kendall has taken on more aspects of his diabetic care or not. Allow me to elaborate……something we did not take into account are the mood swings that accompany T1D’s during puberty. After entering high school our son has become less communicative and so our daily rituals involve constantly asking questions i.e. what is your number, have you tested, how much medicine have you given, did you calibrate, did you change your site, etc. We honestly do not know if he has legitimately assumed more responsibility or does the right thing because of our constant reminders. I know what you are thinking……why not say anything and see what he will do without prompting. Trust me, we have tried this only to give in because after all, we are parents and will always be concerned about his health. We totally understand, very soon, we will have to cut the cord if we are going to get him prepared for college.
We think about college daily. As stated earlier Kendall is a pretty good athlete so we are constantly bombarded with emails about camps and from organizations that promise they can help secure academic and athletic scholarships for your child. Our goal is to start now to find an affordable college that will best serve our sons academic and career objectives. I have to admit we secretly plan on moving to the state in which he decides to go to college. We are working on this and hopefully will have conquered our separation anxiety by his junior year of high school. Our biggest concern is his health and whether he will ever assume the responsibility for his total care. Presently, it takes all 3 of us to maintain the focus on everything necessary to keep him healthy, as well as both academically and athletically competitive.
What aspect of diabetes causes you and your son to butt heads?
My son and I mostly butt heads on his inability to think proactively in reference to maintaining safe glucose levels. We also have challenges in keeping him active in JDRF. JDRF has been a God send and it is important that our son remains active and continue to give back to an organization that does so much for the T1D community. Kendall is appreciative for the support and inclusion that he has received from JDRF, however now that puberty and friends and teen years have begun, he has a preference for wanting to hang more with his teammates or other friends. This in itself is strange as I remember how happy he once was when he had the opportunity to be around others that were just like him! I guess that shows that the independence has begun.
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