One of the hardest obstacles a parent of a young child with Type 1 diabetes must overcome is the reality that their child does indeed have a chronic illness that will eventually cause tremendous amounts of pain.
Since our first day of school diabetes has been giving my son a run for his money. As the school schedule is completely opposite from our summer schedule, and can in no way be replicated throughout the summer, diabetes has been making it hard to be in school.
During the summer my son woke up when he wanted, ate breakfast when he wanted, and rested when he wanted…I think you get the picture. Now along with that loose schedule my son’s basal rates in his insulin pump and the amount of insulin that he received for carbs were perfect. We had the settings just right so that my son stayed in range for most of the day barring a mistake with counting carbs or a bad site. Summer schedule was good to us.
School schedule…not so good. My son is getting up earlier, eating breakfast earlier, and eating a snack and lunch all before noon. All of these new parts of the schedule need to be amended in his insulin pump: new basal rates and new insulin to carb ratio. But in the meantime, while I pull my hair out and lose sleep figuring out the best ratios for this schedule, my son is in pain.
Yes, physical pain. Physical pain because his numbers have been steadily rising to a dangerous level throughout the day. As this happens, my son does not feel right. He gets headaches and stomachaches from high numbers. He gets sluggish and tired, and just feels horrible.
Yes, emotional pain. Emotional pain because my son has been crying everyday at school because he just ‘hates it.’ How diabetes fits into this is that when my son’s number is high, he doesn’t actually know how he feels. He just knows he doesn’t feel right. He may not like school, he may love school, but until his numbers are leveled out, there is no way to tell. All he knows is that he feels worse and worse throughout the day and that is making him incredibly sad. Heartbroken, in fact.
It is this realization that Type 1 diabetes is not just about numbers, it is a highly emotional disease, that smacks you in the face with reality. The reality that not just having diabetes causes you to be sad, but the actual diabetes can cause you to be sad too. It can cause pain from all angles, and my son is not sure where to look. He is looking for protection from these awful feelings, and in a school of 800 children, he has no idea where to turn.
Just typing that thought breaks my heart. My…son…feels…alone.
Diabetes is causing his pain and the only thing I can do is change his pump settings and wait. Not good enough. Not good enough for me, and certainly not good enough for my beautiful 6 year old boy.
If the fact that being told my son had an incurable disease didn’t kill me, then sending that same boy off to school just might.