In a world where there seem to be so many new cases of allergies, I am finding that many people I meet indeed do have a child with allergies. Many of these people are passionate about keeping their children safe, and more specifically safe at school. I listen to how class parties shouldn’t have snacks so their kids don’t feel left out, or kids shouldn’t be allowed to celebrate birthday’s with a cupcake but rather a pencil for every kid in the class. But what always stands out to me in these types of conversations is that the parent usually ends each statement with, “because my kid could die.”
We have been living with Type 1 diabetes for over 4 years. I have explained this disease to numerous teachers, classroom aides, Principals, Vice Principals, class mothers, and friends’ mothers. Really, almost too many people to count as I always feel I am on a crusade of educating everyone about Type 1 diabetes. But until very recently I never added the, “because my kid could die,” statement to my conversations.
But that is very much the truth.
I don’t want my son’s sugar to plummet while he is sleeping, “because my kid could die.”
I don’t want my son’s sugar to go unchecked and go to high, “because my kid could die.”
I don’t want my son’s sugar to drop so low when he is high up on the jungle gym as he could fall, hit his head, “because my kid could die.”
I am not sure why this statement hadn’t really passed my lips in the four years since diagnosis. Until recently.
Maybe I am taking some lead from the mom’s of kids with allergies, knowing that the world listens a little better when you add in that a mistake may make a child die. Maybe I am tired of living with this disease 24 hours a day 7 days a week and people still aren’t getting how serious this hidden disease really is. Maybe I want people to understand that the reason I wake up at night, sometimes several times a night, over the course of four years is because I do not want my child to die.
Maybe I am just coming to terms with the fact that my child, my heart and soul, my absolute reason for living, could indeed die from this disgusting disease at any given moment.
I make a flippant remark the other day to a friend when we were talking about ‘my’ life. “You know it’s a good day in our house when everyone wakes up alive.” It came out faster than I could stop it. As my mom used to say, what’s on my lung comes off my tongue, and this was the case. Although what I said was not insulting anyone it did set ME back a few steps.
In my world, yes, there are fights about school and even with the school. Arguments about cleaning up or lack thereof. Dissent when it comes to bed time. But all in all, it’s a good day in our house when everyone wakes up alive.
So true… People I meet think that my diabetes is more like a chore than a life-threatening disease. They don’t understand the damage it does.
I feel the same way. I’ve had diabetes for 26 years now and every morning I wake up and literally thank God that I’m alive. Because even with my best efforts, there’s always a chance something could slip. But this state of mind gives me a great perspective. Some things become less important (OCD cleaning, arguing about homework with my kids, etc) and other things become more important (how I spend my time with my husband and family, how I feel about myself). Bless you for crusading, explaining, preparing and warning people in your son’s behalf. It might not feel like you’re making much headway, but you are. Even if teachers and principals don’t get it, your son knows you are fighting for him and that can make all the difference in how he treats himself. Good job!!!
Thank you again for letting me in on perspective I would not otherwise have. Every year at back to school time I talk to several parents about struggles with not only education staff but conversations with bus drivers and lunch ladies as well. Staff act like you are looking for special favors or requiring them to go above their responsibilities-when all you are tying to do is to keep your kid safe and alive. I also find some Moms don’t want to become known as a pain in the neck parent and they try to soft pedal if they can. “Because my child could die” is now something that will be added to my conversations with all my parents too.
Thanks, Carol Pediatric Social Worker.
Sometimes I think saying does not help. People don’t care- or don’t want to “get it”. The staff at my sons school was trained and knew the dangers but I was still hassled and treated condescendingly and put off… so I pulled him out. No one cared- none of my friends were there for me. It has been an isolating and enlightening experience. It has made me understand the isolation disabled people go through. Luckily, my son is doing great and we have found a wonderful homeschool group. But it is amazing to see how people will react to you when you become “different”.
My type 1 beautiful daughter is now 18 and in college, but was diagnosed at age 5, so we went through all of school with the same. The worst I think was people who had parents or grandparents with type 2, and thought it was no big deal! Now with the surge in type 2, they really think it is no big deal, well, it IS A BIG DEAL! They should really give Type 1 Diabetes a completely different name!
Couldn’t have said it better myself. I get so frustrated trying to get through to people how severe Type 1 really is. My son has only had Type 1 for 2 years, but it has been a long hard fought 2 years. I’m tired and so is my son of trying to show others just a glimpse of what it is like to live with Type1, but in the end you are right, at least we LIVE. I am thankful every morning when I run to his room to check his levels and I at least have a son to check. My heart breaks for those who have lost a child to this disease. I will forever be greatful to get up a million times a night to check sugar levels, just thankful every single day that I have with him. Thanks for the post <3
Sysy,
Thank you for reading. I get what you mean. I think I never really mentioned death for the last 4 years because I was not ready to accept it. My son can die from this disgusting disease. Thanks for sharing your story and good luck to you and your little one.
Leslie
Melissa,
I am so very sorry for your loss. It is incomprehensible what you and your family have gone through. My heart breaks for you. Thank you for sharing your story. Hugs.
Leslie
I read your story and it hit home. Why you ask, because my son did pass away may 2010 from type 1. His diagnosis was missed and it was too late when we found out. But I agree with you about how serious this disease is and how uneducated people, teachers, doctors and well everyone not touched by it really are. My son was very healthy and very active. This diagnosis was and still is a huge shock to me and our family and friends. I pray that one day something can be done to save the children who are affected. I pray a cure is found. I pray that no other family has to be faced with what we were. No child should be taken due to this disease!! Thanks for sharing your story.
Melissa
This was a great post. I have type 1 and my child has severe food allergies and I make it a point to tell people the same thing about both conditions, the potential for death is present with either one. In fact, I point out that as long as my child is away from certain foods (eggs and peanut) she is fine and no matter where I am, no matter what food I eat, and no matter what time of day it is, I could die. I remember being a kid and listening to my mom have a meeting with all the teachers at school before each school year started and she with a very serious face would look each teacher in the eye and say that “my child could die” just so that they understood the gravity of the situation. In other words, I think parents don’t want to come off as dramatic because unfortunately that’s how people tend to think of us and yet I think that you have total rights to say it this way because it’s the truth. People don’t like hearing bad news but too bad, we have to live this way and it helps if they have their facts straight. (I don’t mean to sound bitter, I swear I’m not-it’s just that the reality is that in school and everywhere else, people have always told me that my type 1 diabetes was “not a big deal” so I think most people still don’t quite know the truth about it). I know you get what I mean. Thanks for this post 🙂 Best wishes to you and your family 🙂