Another Anniversary

As we approach Tommy's 6th anniversary of being diagnosed with Type 1 Diabetes I have encountered a first for me. Just a few days ago Tommy was going to be getting braces. He was very nervous about the thought of it and I tried my best to distract him leading up to the visit with the dentist. In our hurry out the door I left his meter and CGM on the dining room table because I forgot he had diabetes. I FORGOT he had diabetes! For 6 years I have always thought about his disease first. It's what I plan for, it's what I need to anticipate and on this day, in this moment I completely forgot! Sitting in the waiting room waiting for his name to be called I got a text from my husband saying Tommy's things were on the table and immediately I thought what kind of parent am I? How do I forget the one thing that I always remember first. I always have smarties with me in case of a low. I have them in every purse, backpack, and any other item with a pocket. I also knew that Tommy's blood sugar tends to run higher when he gets nervous so I knew for the next hour he'd be ok with.

So what does that have to do with his 6th anniversary of his diagnosis? Well if you had told me 6 years ago in the hospital that it would be possible to forget that your child had diabetes I would have laughed, it wouldn't have been possible. Nothing in those first few days, months, years would have surpassed diabetes. Six years allows for so much growth and understanding.  I have watched Tommy learn how to manage his disease and make it work for him. At his last doctor's visit he had the lowest A1C he's ever had. Tommy earns every bit of that achievement alone. I may buy the food but we allow him to make food choices (as much as a 10 year old should) and he makes good choices almost all of the time. He loves pizza but knows it's not practical to eat it every day. He understands that he should bolus for his food ahead of time. I tell him when a meal is coming and tests and boluses then. He understands that if he's running high he needs to wait a little longer to eat. He doesn't like pump changes but knows it's all part of it. His willingness to help with his disease makes all the difference in the world. I thank him for testing his blood, it's an "oh good, you already bolused" when he gives his insulin before a meal, and it's listening to him when he's having a bad day. We are a team.

What happens when both members of the team forget the T1D meter and CGM on the dining room table? We agree it is an epic fail and then decide what color rubber bands to get for his braces. I'm not sure I'll forget that he has diabetes anytime soon but I'm glad the neither of us thinks of diabetes as the end all of the day. Sometimes there are things bigger than diabetes and I think that's a healthy attitude!

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! 

Background Music

Last week we got the amazing opportunity to take part in a camp for children with disabilities and their siblings. The camp is run by Pony Power Therapies and it gives the kids time to ride horses, interact with them and do different farm activities. Parents also take part in a program with the horses. 

To me what made this week so special was that the kids there were not defined by their differences as they are in most of their everyday life. Each family was unique but when we entered our morning circle there was one common goal to be achieved by everyone. There are so many activities that Tommy has done before. Normally after I tell whomever is in charge that he has type 1 diabetes there is a face of fear. In my head I laugh because it's typically the same look of panic or fear followed by, "but your staying right, I don't have to do anything".  I appreciate the way they feel, they don't want to harm Tommy but they don't realize he's not that breakable.

 At this camp last week every family had there own troubles, their own journeys and no one had that look of panic, no fear someone would break. The kids rode their horses and you could feel the pride that was shown in their smiles. 

For the first time in 4 years I felt like we were on a disease vacation. Obviously I still monitored him, his diabetes is the background music of our lives. The music is always playing, I'm used to it now. I know each of the families at camp had their own background music playing too but I think most would agree the music wasn't as loud as it normally is. Each day was joy. My kids miss "their horses", they miss the amazing staff who I can't say enough good things about, and I miss the sense of community they were able to foster in 4 short days. 

During that week Tommy didn't complain about site changes, he didn't complain about his HGH injections, he seemed ok with the background music. I think the difference was for the first time he didn't feel like everyone was looking at him as being different, he was just another kid excited to ride their horse. 

I took a lot of mental snapshots in those 4 days. The joy on their face as they rode, the pride they felt when they walked their horse in the ring and their sense of accomplishment when they were done grooming their horse. When the background music gets a little too loud I will flip through those amazing snapshots!

The Real Reason I Walk

A few weeks ago I got the privilege of listening to a man who go to "try out" the bionic pancreas (artificial pancreas). It was like listening to a science fiction novel: A man with Type 1 Diabetes that  was able to eat and drink what ever he wanted to and he never worried about his blood sugar. Although the down side is he had to wear a pump and CGM like Tommy with an additional pump that would give him sugar (or glucagon) when he went low. The 2 pumps and CGM talked to an iphone (of all things) and a very fancy application decided how much insulin to give him as he ate. What hit home for me is when he said he went to the aquarium with his family and for the first time was 100% present in the moment because he didn't need to think about his diabetes.

His talk got me thinking - how much has diabetes taken away from Tom, from Tommy, from both Allison and Brady and us as a family. The answer I came up with is TOO MUCH!!!

Each year I begin fundraising for the JDRF Walk to Cure diabetes on the anniversary of the day Tommy was diagnosed. It's my way of recognizing a hard day for us in the most positive way I know how, by trying to find a cure. I know a bionic pancreas isn't a cure but it's the closet thing we have to one right now that will allow everyone with diabetes to think a little less about their diabetes and a little more about life around them.

It's difficult to explain to someone who doesn't live with someone with diabetes what every day is like. Many people tell me how manageable the disease is and how great it is that insulin exists and that is true. What people don't see is all the decisions that are made each hour of the day to "manage" diabetes.  It starts in the morning - what's the blood sugar reading - is it high or low, what to eat for breakfast sometimes hinges on what we are doing that morning - have I calculated the correct carbs - what do we need to pack up before leaving - does he have the paperwork for the nurse with is lunch carbs - and this is all before leaving for school. It's not just the decisions that need to be made is it's the little things you miss out on when you are feeling low or your sugar is too high. There are too many times to count that Tom eats a little extra sugar to "prevent a low"  and while it helps in that regard it can also make him  cranky and not enjoy the outing as much as he would have. It sounds small but it's not when you add a life time of those little moments. I want Tommy to get everything out of school that he can - to learn the information and be able to retain it.  I want Tommy to be able to enjoy every minute of his wedding day when he gets older - I don't want diabetes to need to be factored into the day. I don't want his wife to be in the delivery room and look at his pale face and wonder if it's because he's nervous or because he's low. I don't want him to worry about carrying around a meter, a CGM, sugar to combat a low, extra insulin in case of pump failure and all the things that are needed for that list. I want the choices that he makes a day not to have to factor in diabetes first. I want him to be 100% in the moment.

So why do I do the JDRF Walk to Cure diabetes? The truth, because they need money to fund the bionic pancreas and so many more projects that takes away some of the manageable things a person with diabetes needs to manage. Simply, I want 100% of my husband and 100% of my son. Diabetes has taken too much from them and our family already!

Memories

It's funny how memories work. I have so many memories in my head of my children from the time I learned I would be having each of them to today. Ninety-five percent of these memories are all good - the first smile, the first mama, the first I love you, the first day of school. They will never remember those firsts so I email them. I have email accounts for each of my children and I email them about the sweet things they do or pictures of a kindergarten graduation. On their 16th birthdays they will get their login and passwords and will learn of all the memories I have saved for them. For Tommy his emails will have other memories, ones that I hope when he reads them will not be a factor in his life anymore. I hope and pray that by the time he is 16 diabetes will be a disease people USED to have and will just be a memory. The emails I send him are filled with my pride for the first time he tested himself or about the day he got his pump and his new friend Lenny the lion. I want him to know as he grows up how incredibly brave he was at the age of 4 being first diagnosed and how quickly he learned the tools to help take care of himself. Each thing he learns gives him freedom - a freedom that was taken away on April 25, 2011. The emails are to remind him of all that he has accomplished and all that he can do.

Today when he woke up his blood sugar and ketones were high - for the second day in a row. Yesterday I changed his site (it was site changing day anyway) and all was good from then forward so the high number today either means he's sick or a bad site. I gave him his correction (insulin for the high blood sugar) and insulin to cover his breakfast with in a shot so I knew he'd get the insulin he'd need. As I was giving him the shot he asked if he was scared of shots when he "got" diabetes  - I said you were but you we worked on it. I said "Don't you remember you got to watch trailers" He said "I don't, I was too little".  I cried - I couldn't help it. I'm a together person in front of them. Since he's been diagnosed there has been maybe one time he's seen me cry and that was right after I had Brady when I completely lost it and didn't think making it through the day was possible with a 4 year old with diabetes, a 1 year old and a newborn but that was more about post baby hormones then anything else. Today I was just so sad for him - two years is enough time to forget what it was like to get insulin shots for the first time. I am happy he doesn't remember how difficult it was at first, how it took both Tom and I to give him shot. That we needed to hold his hands so he didn't try to hit our hand away, the crying before every meal because it meant he would need a shot. Thankfully those days ended quickly thanks to an ipad and lots of hugs. I'm glad he doesn't have the memories of that I have but I can't help but think he won't have a memory of what life was like before diabetes. Tom does, he was old enough at 9 to remember things before diabetes.

Memories are a tricky thing. Today my ability to remember makes me sad for days before April 25th when Tommy was just a kid - not a kid with diabetes. Sometimes the weight of the responsibilities seem so much more then others. I don't ever feel sorry for myself though because I know these responsibilities will be his one day - I see it with Tom. There are some days that you just say "today sucks" and you move on. I'm moving on...his numbers are better....ketones are gone....we've moved on to the topic of Teenage Mutant Ninja Turtles. I'll pass on emailing him today - Saturday he gets to play with some of the kids he'll see in 1st grade - that will be a great email to send!