Friday, September 16, 2011

Dealing with Diabetes

I don't always like to be so serious. I'd much rather laugh and joke around and poke fun at people. But I thought writing about this might help me to deal. So, please bear with me as I get a little deep and do away with the humor for this post.

My son has diabetes, Type 1, formerly known as Juvenile Diabetes. The name may have changed but the disease is the same. What this means is that Christopher’s pancreas doesn’t work and his body can’t make insulin on its own. He was diagnosed at the end of June, just as Summer was getting into full swing. In the blink of an eye he went from being a healthy 7-year old boy who has never been seriously sick, aside from having colds and the usual pre-school runny nose, to having an auto-immune disease. He has never missed a day of school and I have the Academic Achievement certificates to prove that. I’m hoping diabetes won’t keep him from earning more Perfect Attendance certificates.

I remember when the doctor called to give me the news. She told me the blood test results had come back and Chris tested positive for diabetes. After that the conversation became like white noise to me because my mind kept repeating one word…diabetes. What started out as a possible bladder or urinary infection had turned into the worst-case scenario. I called my husband at work and told him to come home, that we needed to take Chris to the hospital. Then I went and hugged my son and told him the news. He said nothing at first but then it was like something clicked and he realized what was happening was bad. He cried while I held him and tried to be reassuring. Afterward he seemed better, almost unaffected by the news. It’s amazing how children have that ability to bounce back. I wish I could have that. When I told my parents, I cried a bit with my mom. Then I pulled myself together.

We all went to the hospital where I filled out forms and answered questions and tried to keep my son’s spirits up. The staff was friendly and kind to us. I held Chris’s hand as they inserted the IV into his arm and I spent the night in the hospital with him. I barely slept between the comings and goings of the nurses and worrying about my kid not to mention dealing with his diagnosis. Over the next two days we were educated on how to manage this disease. There were books and pamphlets to read and of course we had to learn how to check his blood glucose levels and how to administer his insulin shots. I took notes, paid attention and began my role as my son’s caregiver. I was on autopilot.

That night I went home to get some sleep and left Chris and his dad to spend the night in the hospital. Once at home, I allowed myself to fall apart. I cried. I raged. I wanted to know how and why this had happened. I still do.

The next day we were able to take him home along with our newly learned instructions for keeping him healthy and a backpack filled with supplies and literature. I was happy to have him home and determined to get back to some sense of normalcy. But normal is gone. It’s been replaced by needles, meters, test strips and carb counting. Before each meal Chris has to prick a fingertip and test his blood. Then he can eat. After his meal he gets an insulin injection.

I’m horrible at math. In school I barely passed. Yet, here I am, running numbers according to formulas for the sake of my son’s health. It’s ironic. It’s ridiculous. It’s necessary. I add up all the carbs he eats during a meal and divide that by the insulin-to-carbohydrate ratio (pre-determined by the doctor), which gives me A. I then take his blood glucose number and follow the formula, which gives me B. A + B = C and C is the amount of insulin he needs. I have a calculator next to his diabetes supplies.

This goes on every day. I watch as he pricks his little fingers to draw blood for testing. I pierce his smooth skin with a needle to give him his insulin. He counts to 3 and I insert. Most of the time it’s over and done. Sometimes he winces and sometimes he tells me it hurts. Each time it rips my heart apart and I find myself cursing silently that he must go through this. If he had to get diabetes why couldn’t he have Type 2 and just take medication? No, he has to endure needles, and pin pricks, and test strips, and if his numbers run too high he has to pee on another test strip. In the rawest of terms, this disease sucks.

In the beginning following his diagnosis, I bounced between two emotions: sadness and anger. I was sad that my son has this horrible disease and will have it for the rest of his life. And I was angry for the same reasons. I still carry them inside me and have yet to make peace with it all.

Chris has come to accept it. He understands what he has and what he must do to maintain his health but he doesn’t let it hinder him. As long as he can keep riding his bike, playing baseball, swimming and playing his video games, he’s happy. Of course there are times when he hates diabetes and doesn’t want to prick his finger and I understand that. It’s an inconvenience. But then I tell him that unfortunately, he has to do this. We’ve always tried to teach him about choices and this disease is in direct conflict with that.  

It’s especially hard when he tells me it’s unfair and he wishes he didn’t have diabetes. At those times I hug him and tell him I agree. He has the right to feel however he wants because this is his disease and his life. And while I try to put a positive spin on it and keep the smiles coming, I hide my true emotions, which make me want to lash out at someone or something. I want to hold someone accountable. I want someone to blame. I want to hit someone hard and transfer my anger and frustration onto them. But, I can’t.

I joined a support group at my local chapter of Juvenile Diabetes Research Foundation, which meets once a month. It helps to go there and share my feelings. I’ve met other parents who have gone through or are going through the same as me. I learn new information about the disease and bring home new reading material. It helps to keep me focused on what’s really important: my son’s health.

Our next goal is to get Chris on an insulin pump, which will do away with the injections he gets. It should make life easier and more comfortable for him. Ultimately we hope for a cure. Chris is optimistic that they will find one in his lifetime. I pray they do.

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  1. Ugh, Sandy, that sucks, but like you said: kids are resilient, and your son will learn to manage his condition even better than his parents. This will all become your new normal soon enough.

  2. Thanks Erica. Yes, right now he is doing quite well and taking it all in stride. I admire his courage and positivity.

  3. It's a tough disease. I had a roommate and close friend with type 1 diabetes. I was at a hospital for three days with her when she got food poisoning which ended in ketoacidosis. It can be scary, but managing it well helps keep you from problems like that. He'll learn to be more self-sufficient and how to take care of himself better than others. Try to keep positive.

  4. Thanks Carina! I'm trying to stay positive for him.