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.
Leslie,
This is a painfully poignant post to read. I wish that your beautiful boy did not have to endure such physical and emotional pain everyday. I also wish the same for all the other folks and children with Type1 out there. Life is hard enough without the stress of such a horrible disease.
It hurts to see and hear how painful this is for you too.
I know though and as much as it stinks(best word I could use online) that you, your beautiful boy, and your family have to live with this detestable disease everyday that you will figure it out in record time and your school district will become more Type1 knowledgeable. This will happen. Because Leslie, you are continuously working and raising awareness about Type1 to your communities school system and as a result of your dedication and hard work your beautiful boy will have people to turn to at school when he feels alone. You’re the best Mama.
Kim,
I will be thinking of you and A tomorrow on this very important day. You are an awesome mom, and you should be proud of the wonderful daughter you are raising!
Leslie
Leslie, ok I am sobbing reading this one. This is all so very true and honest. It breaks my heart that he feels that way and yet it is inevitable for all of our children. It is so difficult being a pancreas 24/7 for our kids but we do it day in and day out, I am realizing by reading your notes this week that it will be much much more difficult to NOT be a pancreas anymore….
Our D day is tomorrow (1 year anniversary of diagnosis) and I am having SO many mixed emotions. Just reading your blogs and knowing that you (and the other T1 Moms) are out there is comforting.
Thank you for your very candid and honest writing…xoxo
Love, Kim
Katie,
Someone else mentioned a family therapist, and I think that is definitely worth exploring. I am leaving all my options open because my ultimate goal is the same as every mother…a happy, healthy child.
Leslie, this just kills me. I know how hard you try to help G live without fear. This disease is so incredibly emotionally intense for families, and it wears you down. I hope that you and the school can work together to help G be his best self. Perhaps it would be good for a family therapist to help you guys work through some of these issues and find a way for G to cope with his fears, and to be able to communicate with the adults around him.
Thanks everyone.
Leslie, you brought me to tears. About 6 months ago, I realized that this disease more than anything is emotional and mental for me. You took the words right out of my mouth. I hate what G is having to go through, and you too. I wish I could knock on your door and give you both HUGE hugs right now.
Oh Leslie, this breaks my heart! I’m so sorry you are having such a hard adjustment!