Our Reality

I have heard how "manageable" diabetes is and how "it's not so bad". I am a positive person and try to always look toward the bright, humorous side or our day to day work with T1D. Although I don't complain about his disease much it takes a great toll on us. 

When you are potty training a child you can complain about it. It's difficult, it's tiresome, you try to think for the child's bladder: when is the last time they drank? should I have him/her try now or wait? This process lasts for a short time then the child is potty trained and you move on to new things. Having a child with diabetes is just like potty training, we are always thinking for his pancreases and making decisions based on what he eats, what he did, what he is about to, etc. The difference is this is not for a short time, till there is a cure this day to day work will not end. Which is why complaining won't do much but drag you down. There is a reality to the disease though that is a heavy burden to carry.

This is our reality: 

In the morning you hope for a number in a range to start the day. You calculate carbs for breakfast and give insulin. Before hitting the "ok" button on the pump you have to think about the day. Will he be running around right afterwards? Yes, give less insulin Is his numbers a little higher than usual? Check his pump to see if it's ok, if it is give insulin but wait 30 minutes (or more) to give food so the insulin can get to work. Don't forget to set the timer for 30 minutes - we don't want him to run low. Between breakfast and lunch you will check his numbers a few times - did the pump work correctly, did you guess the amount of activity correctly, did he have a snack. For lunch you correct any high or take away insulin if he's running low and do the same for dinner. At bed you do another check and cross your fingers for a great numbers so you don't need to worry about his dexcom alarming in the middle of the night. On days of a lot of activity it's possible to go low and he will need juice in the middle of the night. Many times this can be prevented by reducing his basal over a few hours at bed but you have to also hope you did this correctly. 

This doesn't include changing his pump every 3 days which takes only 5 minutes but for him it means a needle sticking him then leaving a cannula in him to deliver insulin. Depending on the area this hurts more or a lot more - it's never pain free. He also has a dexcom inserted, also with a needle, every 2 weeks. These devices make "managing" his T1D much easier. Before his pump he would get at least 5 needles a day and would need to prick his finger at least 6 times a day. He needs blood work every 3 months and visits his endo every 3 months as well. Based on his blood work and what his numbers look like over that time adjustments are made. As a parent you think of these visits as report cards - how well did you take care of your child, it's a long day for both of us.

There is never a time he can just grab something to eat without thinking about carb counts and how much insulin he'll need. There is never just running out the door without all your supplies (meter, dexcom, and something to treat a low). You live your day based on numbers and the ability to react based on those numbers. This is our everyday when things go well. 

Just this week we had a particularly difficult week. In the past 6-8 months Tommy has developed a puffiness to the top of his arms from his pump. We've needed to find a new location for his pump while that healed because the area wasn't absorbing insulin. After hitting muscle on 2 pumps in a row and the insulin not absorbing we got perfect placement on the 3rd pump. It was good timing as we were going to the Crayola Experience that day. We spent the morning bringing down the overnight high and by lunch he had perfect numbers. A short time after entering the play area I heard Brady yelling "Tommy's pump is screaming" and sure enough there was a communication error with his pod and it was no longer working. I had a back up insulin pen with me but that doesn't give him his basal (the insulin that gets delivered every hour). So I kept an eye on his numbers and gave him a shot when his numbers were getting too high. Since we were almost 2 hours from home and it was close to dinner I knew I would need to figure his dinner without his pump to do the math and he would need another shot. We try to bolus him for dinner before hand to keep his numbers steady but when going out to eat that is not possible. We got home and I put on another pump and corrected the high. Four pumps in 2 days! I felt bad for him having to have it changed again and I couldn't help but think about the wasted insulin and the wasted pods that are very costly every month. 

There are days that you want to put your head down and cry but you can't there are always new numbers to look at and new reactions to those numbers. So when people say "it's not so bad" I want to say yes, yes it is that bad some days but what's the sense in complaining. Complaining won't change the disease. Hating diabetes will just take away the energy I need to read numbers and react to them. I want to spend my extra energy loving my son for going through this with a positive attitude. I share this disease with him while his young then it becomes his job to read and react to numbers when he gets older and more independent. If we have a healthy attitude so will he. I will save my tears when there is a cure or when the artificial pancreas is an option for him and I will cry in relief and joy. 

Camp Roundup

Two years ago I would have never thought Tommy would go to a non-diabetes camp and sail through 3 weeks in his own but he has done just that! 

Let's rewind a bit. Two years ago Tommy started camp just after starting HGH (human growth hormone), a new medication to help him grow. Tommy has always hung around the 10th percentile for height but since being diagnosed with diabetes he quickly fell off the curve. The medication was necessary for him to grow but it didn't not come without side effects. The biggest problem was its effect on his blood sugar, sending it very high, for weeks. No amount of insulin was bringing it down and it was a very difficult time for us mentally and him physically. During that time he started camp at our public school. I thought it was a great fit because the nurse would be at school. By day two he was needing to go to the nurse 5-9 times a day and camp is only 3 hours long. He wasn't having fun a felt different from the rest of the kids, the part I took the hardest. We have always shown Tommy he can accomplish anything with his disease but this time it had us beat. He withdrew from camp and never wanted to go back. 

Now flash forward 2 years..he shows interest in camp and I signed him up! Now armed with a dexcom that displays his blood sugar and MUCH better numbers he enters camp. This year is different, he's older and understands much more about his disease. During camp he counted his own carbs, dosed himself for all snacks, and had someone call me when things were not right. I was SO impressed with him during those weeks. He loved camp and diabetes was very much an afterthought. 

We did encounter a nervous nurse who called me a few times despite the fact that Tommy was out playing at gym. His weeks at camp couldn't have gone better! 

Tommy is looking forward to camp next year and I'm so glad that we always look to the future. We take the lessons of an experience (good or bad) and just keep moving forward. 

He Lived

Since Tommy's 5 year diagnosis anniversary in April I've been thinking there must be some profound statement that goes along with that. There must be something to say for living with a disease for that long and I just couldn't find the words. Well, today I was painting a preschool classroom and was listening to some music. The song "I Lived" by One Republic was on and as I sang along I realized that is the profound thought! I LIVED! 

The song talks about owning every second and Tommy has! It talks about "doing it all" and he has.Diabetes hasn't   stopped him from doing anything that he's wanted to accomplish. 

In the past 5 years Tommy has become a big brother, graduated preschool, made it through kindergarten through 3rd grades, played soccer, played baseball, played basketball, excelled at writing his own works, became an avid reader, learned to ride a horse, continued his love for movies, learned to write comics, gone to Hershey Park too many times to count, gone to Disney, spent summer days at the lake or at the beach, has built snowman and gone sledding, learned his own sense of style, learned to tie his shoes, developed his own sense of humor, he's made friends, he's smiled, he's laughed, he's cried, he's lived!

Just recently Tommy asked me about the day he was diagnosed and wondered if I cried when I found out. I said I didn't cry when I first found out because I didn't want him to be scared. He told me that at the hospital he felt like I could take care of him and didn't feel any different and I realize we lived too. Our world changed on April 25,2011 but it didn't stop. Our life has been so full in the last 5 years and I'm grateful that we decided to thrive through each difficult time that we've needed to walk though. We've lived!