Category: Uncategorized

As a parent of a child who was diagnosed with Type 1 diabetes at the tender age of 4, I am being robbed of the experience of raising a child without diabetes. But more importantly, my son is being robbed of the experience of just being 4 then 5 then 6.

I will never know as he grows and changes how much diabetes has an impact on who he has become and is still becoming. He started school when he was 4 and 2 months.  He got diagnosed with Type 1 diabetes when he was 4 and 1 month. He will never know what it is like to go to school without diabetes. It is robbing him of the regular experience of just going to school. He is bogged down with glucose checks and bolusing throughout his day. He can’t just learn, and play and be like everyone else, he also has to carry around Type 1 diabetes. Diabetes robs him of that normalcy.

Along the same lines, I will never know what my son would have been like in first grade without diabetes. The only student I know him as is a student with diabetes. I only know what it’s like to have to train staff member upon staff member about his diabetes and his symptoms for highs and lows. I only know the fear of sending a child with Type 1 diabetes into a huge school where he feels completely unsafe. I am being robbed of our first grade experience.

That’s not to say diabetes is causing any issues, what I am saying is that I will never know when and if an issue arises if it would have surfaced has diabetes never reared it’s awful, ugly head. I will never know what it is like to send a 6 year old boy to first grade without diabetes.

My son will never know how it feels to run around the playground at school without a care in the world. He needs to always remain cognizant of where his special lunch bag is that carries his low blood glucose treatment. He can’t be too far from the adult carrying that lunch bag because if he goes low and it or the the person is too far away, no one will know. Diabetes robs him of his security.

People talk about diabetes as being a manageable disease, but at what cost.

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.

As a parent of a child with Type 1 diabetes one of the hardest tasks that I have been required to do so far since this disease invaded my son’s life is to hand over control of my son’s health and ultimately his life to strangers.

Now you may ask yourself why for goodness sake would any mother in their right mind would hand over control of their child’s life to stranger, but that is exactly what I just did two days ago when my son started 1st grade. That is exactly what sending my son to public school, instead of homeschooling, has me do. I do not know anyone in the school. Sure I’ve met the teacher, the nurse, and the ancillary staff, but in reality we are all still strangers.

When I brought my son home from the hospital when he was born over 6 years ago you would have had to pry him from my cold dead fingers before I handed over his care to strangers. For millions and millions (etc.) of dollars I would not have handed him over to a stranger in Shop Rite with a note of care instructions attached to his swaddled self.

Yet, this is how I am feeling now 6 years later. I feel that I have left my son, my baby, amongst 800 strangers, mostly children and some adults, with a note attached to his shirt telling them of high blood sugar symptoms, low blood sugar symptoms and my phone number if they need me.

This is not a good feeling.

I have to believe that the little training that I was able to squeeze into these early days of the start of the school year are going to be enough to keep my son safe when he is not with me.

I have to believe that instinct will kick in for the adults in charge of my child and they will notify the nurse immediately when something just doesn’t seem right with my son.

I have to believe that the adults understood when I explained the seriousness of low blood sugar. I have to believe they will catch the low, and treat it before my son has a seizure and slips into unconsciousness.

I have to believe that every folder I handed out with info about Type 1 diabetes and my son, and there were about 16 in all, are getting read over this long weekend, and were not just tossed in the car with the rest of the school supplies.

I have to believe all of these things of strangers.

I have to believe all of these things, but I can tell you I am not there yet. Not even close.