How ’bout 11?

“Mom, you didn’t test me last night”
“Yes I did, but if you are worried about it and you are awake maybe you should be testing yourself during the night. It would be great to give me a break after 10 years.”
“A break? That’s okay.”
“But you should get used to testing yourself. If you are awake anyway why not give your old Mom a break?”
“How ’bout we go for you testing me every night for eleven years instead?”

That was the conversation I had with my son the other morning. I had to laugh to myself when he suggested that I didn’t test him. He never wakes up when I do test him unless he is high and needs to use the washroom or hasn’t gone to sleep yet when he was supposed to. This child sleeps through everything! I drizzled snow on his bare back that very morning to wake him up (after calling him and blaring music) and he continued to sleep. He used to sleep while eating a sandwich after a low. He can sleep while drinking a juice or chewing glucose tablets. Its all a little unnerving but I watch, make sure everything is chewed and swallowed and that he doesn’t choke.

The fact that he is such a sound sleeper does scare me a bit. He sleeps through the alarms on his pump so a CGMS won’t get him out of bed to treat. The only upside is that when he sleeps at a friend’s house, he does wake up to the alarm…well maybe the friend wakes up to the alarm and gets him moving. Either way, he does test when he isn’t at my house. He does wake up to the alarm when he is with his father…and then rolls over and sleeps while waiting for Dad to get up and test him.

The upside is that he is still young. He has a few more years before Mom starts to really get on his case about waking up himself. For now he is spoiled…Mom gets him up, Mom cooks for him, Mom tests him, and Mom gets his glucose for his lows. If he is really lucky he will marry a girl who will do even half of this but he may be pushing that one!

After 10 years, I am getting tired of waking up at nights and testing. I have been waking up through the night for 16 years…yes long before diabetes, so I am sure that I will continue to wake up at all hours. If I am waking up I might as well make sure that he is safe and I have tested him especially since the rest of the conversation went something like this…

“I have to be tested at night. I might go low and die if no one tests me.”

Ouch! I did clarify that he would probably just go low and worst case scenario have a seizure. Sadly he knows the reality. While some will argue that your body will kick in, you will rebound, and all will be fine except for a nasty high the next morning. This may be the case for many but my son and I have also seen a different outcome. He knows that I have had friends go low at night and never wake up again. Its not a reality that I enjoy my young child being aware of. He takes it in stride but he knows just the same. More fun with diabetes….

Diabetes Counterculture?

For those of us who have been living in the diabetes world for a year or to, it is very obvious to us that we have our own language and way of doing things. It is common for a mother of a two year old with diabetes who is throwing a tantrum to state in a stern voice, “You had better be high Missy!!” They are used to the odd looks that they receive as people are racing to call Child Protective Services on the parent who seems okay with their toddler being “high”.
I came across a tidbit today in the Children with Diabetes Humour section that fit with this. The family was eating in a restaurant that served alcohol. The five year old with diabetes was hungry and impatient. Mom was looking for alcohol swabs to try and clean something off of her fingers. She began chanting, “Where is my alcohol? I want my alcohol!” For some reason people looked at them a little funny. Those of us who live with diabetes see nothing strange about this.
Maybe we are the odd ones? We are the ones that are very nonchalant about the amount of blood splattered on our sheets and clothing. We have learned to buy dark sheets and avoid white at all costs. Personally, I think my son took the blood thing to a whole new level the other day. I sat down in the living room and on the coffee table was his test kit (and of course a pile of dead strips). I was shocked however when I looked at his lancing devise. That puppy looked like it had been murdered!! It was amazing the amount of blood all over it. I swear I thought it had been part of some sort of deadly attack. When I asked my son about it he was very calm. He saw nothing wrong with it. I was positive that if a police officer had walked in at that moment, he would tear my house apart looking for the dead body. I could give any CSI episode a run for its money in blood splatter!
But our oddness seems to be spreading. Our terms that so often sound like something out of a counter-culture…being high, needing alcohol, having a shot, seem to have made their way into main stream media. Last night I was doing some research on an athlete. He is heading to the Olympics but I really knew nothing about him. I found a bit more information last night but my work ended after reading a CTV article. Now CTV is a respected Canadian television network. They discussed the trials and tribulations of this young man…not only is he obviously a little off his rocker for choosing a sport that requires him to ski for FIFTY KILOMETERS (I can’t do 50 meters!) but he is doing it after numerous sports related injuries and surgeries as well as living with Type 1 diabetes. He is truly amazing but the best, best, best part of the article for me was when they discussed life before his insulin pump. You see in those days he was required to take up to 10 HITS of insulin a day!! I have heard it called a lot of things but even for me, “hits” of insulin takes me directly to the drug world and I have to laugh.
I honestly don’t care if they want to call it hits of insulin. I don’t care if people think I am crazy when I ask if my kid is high and I am not talking about drugs. These are things that we live with and maybe using these words that have become so popular in reference to other things will just make this disease a bit more memorable for people and make the ask more questions.
Off to check and see how many “hits” my son took today….

Happy Holidays

Every day I have meant to sit down here and write about so many things. There has been rumblings of advocates in Ontario wanting to see change in schools. There has been my own research and internal battle on whether or not to get a CGMS for my son…and of course there has been the diabetes roller coaster ride that just never seems to end.

The past 24 hours however have had me recollecting “Christmas with diabetes”. Times have changed a lot over the years. We no longer wake Liam up to eat at certain times or require that meals be at a set point in the day with a fixed carb value. This year his teacher gave him a box of Rollo chocolates for Christmas and his breakfast was a diet root beer that he found in his stocking–at true breakfast of champions! He was woke up when Mom was tired of staring at the gifts and wanted company. Brunch consisted of eggs, turkey bacon, toast and chocolates. Our Christmas dinner was a never ending plate of potatoes, stuffing, salads, and turkey with diet Pepsi in a wine glass and apple crisp to top it all off. His pump was steady trying to keep up with the next plate full of food but I guarantee the child is not hungry this evening!

There has been a bit of extra testing today has he embarked on some Wii mountain climbing and high powered dirt biking. After listening to my ceiling rattle and waiting for things to cave in, I felt that a bit of testing might be a good idea. Ironically all was fine!

There were some things that reminded me that our lives are a little different because of diabetes however. Last night I chose to take my kids to Christmas Eve mass. We are not a religious family but its a tradition upheld by friends and one that I felt would be nice to continue with my children. The families all walked over to the Church. Liam needed to test once we found a pew but was concerned about the noise of the meter. I turned off the “beep” and he tested. I am sure whoever vacuumed in there today found a stray test strip. It would have jumped from his pocket I know it! He was running a little high and it was noticed by the family we were spending the evening with. They were shocked to see Liam have only one piece of pie. My dear friend finally turned to him and asked “Who are you and what did you do with our Liam?” Liam said “I am high and I just can’t really eat right now.”

You have to know how odd that would sound if you didn’t live with diabetes! Thankfully they have been around us for the past 12 years and are fully aware that it is not a big deal for my 12 year old to be “high”. Well they know its a problem and they understand that he doesn’t feel well but they are not searching for drug paraphernalia or calling child protective services.

I have done a lot of personal reflection over this holiday season and its amazing how far we have come. Diabetes, the teen years, and puberty continue to threaten my sanity but with the many advances in care and the support of new and old friends–we are truly blessed and will somehow make it through this ride stronger and richer for the experience.

Happy holidays to one and all and thank you for being their for us!

Failing Grade

Its funny how everyone thinks of the A1c test if it is the true measure of your ability to be a pancreas. What is supposed to be a guide becomes a ruler on which to judge if we have “passed” or “failed” in our ability to beat the diabetes gods for the past 3 months.

Liam’s A1c was done about a month ago. We finally got the results yesterday. I knew I would fail. I knew I had been a bad pancreas. I knew that I wasn’t logging. I knew that Liam not testing and me not being on top of it all would come back to bite me. I also knew that my son had begun puberty and hormones were now seriously messing with our ability to get any sort of handle on control.

I failed. By my standards I failed rather miserably. I believe it is the worst A1c we have had. Yes it could have been worse but I still feel that I have failed. I know there has been a burn out factor and still the good old “mommy guilt”. I am burnt out after all of this time and yet my child will have to carry this burden for much longer than I will. Who am I to burn out so quickly?

Good or bad, Liam has a much more lax attitude towards his disease. He takes things as they come, corrects as he goes along and does not seem bothered by much. Mom takes each high or low as a personal failure and over the past few months it has been worse than ever. I have become my own worst critic. That is not a good thing.

I have had to step back and look at the advice I give so many newly diagnosed parents…look at the world 4 hours at a time. If you have a good 4 hour period be proud and know that you were a good pancreas. If you get a longer stretch with good numbers then do a happy dance. You were amazing! We have seen good stretches. I have made good calls but I am still sending myself back to school. Time to dig out the John Walsh “Pumping Insulin” books and make some new notes. I haven’t sat down with any of them in a few years and I think I need to start fresh. Its time to clean out the cobwebs and look at things as if I was just starting out. Its easy to get complacent. You cannot let diabetes rule your life but complications are real and a good respect of the “gods” you are playing with is not a bad idea either.

Back to the books!

SupperNanny Tackles Type 1

I don’t think I have ever watched the show from start to finish. I never record shows anymore and I don’t know when I have had people go through so much trouble to find me a link to watch a TV show but here you have it…a bunch of firsts for me and a big Wow!

For those who never watch this show either, there is a TV show on called “Suppernanny“. She is a British lady who comes in and straightens out your family when you can’t do it on your own any more. In 41 minutes she fixes your marriage, makes all your children angels and teaches everyone how to get along with each other. This is why I don’t tend to watch it on a normal day. I am just not into shows that make life so black and white and pat. I had however heard that she would be going to help a family who had a child with Type 1 diabetes.

I don’t know if all diseases are like this, but those of us who live with Type 1 diabetes in our lives are harsh critics. I think it has to do with all of the misconceptions that we deal with on a regular basis. We are so used to defending and teaching that we are quick to judge when Type 1 diabetes is portrayed in the media. In our defence, a lot of media outlets do make horrific mistakes but still we are a tough crowd to get something past.

Supernanny had received a passing grade. No rave reviews now but most parents seemed to be impressed that she went in with a good general knowledge and was able to separate the disease from the child’s behavior. Now I was really curious! I had been traveling when it was originally aired but no fear because these things are always to be found online. I received three links to the show before I was given one that was usable outside of the US! Finally this morning I was able to sit down and watch it.

I was impressed. I still will not be watching the show but for a change the focus was on Type 1 diabetes. They didn’t fuss too much about the little boy who loved to pound on his sibling. They did focus on Mom’s fear that her son would die from Type 1 diabetes just has his grandfather had. They didn’t focus too much on the big sister who was sick and tired of cleaning up after two obnoxious little brothers. They did focus on the fight to get the child with Type 1 to eat all of his food. They showed blood glucose testing. They showed injections being injected. They showed carb counting and insulin calculations. They showed a child who refused to eat and threatened to vomit. They showed a child who could take 2 hours to finish a meal.

Now if Jo the Supernanny was also a super CDE then she would know to put the child on a different insulin regimen and no longer worry about feeding the insulin except in the case of lows. She would then be able to give the parents the power to say “If you don’t want to eat fine but you won’t be getting anything later” and mean it.

We are coming closer to 10 years since diagnosis with each passing day and some of what this family was dealing with I remember as if it was yesterday. Liam was 2 and this child was 5 but still both of them used food to control a situation that was well beyond their control. Liam would keep an entire meal in his cheek without swallowing. He would finally swallow only to vomit it all back up. He would take 2 hours to eat a pop tart. I would end up feeding him almost anything just so that he had the carbs to cover the insulin that was already in his system.

I will remain eternally grateful for the incredible support we had both in his diabetes clinic and through some wonderful people I met online. They finally got me to click in to the fact that if I didn’t inject him with the fast acting insulin he would be okay with minimal food. We were using NPH at the time and Humalog. As I learned how the insulins worked, I began to have power as a parent again. I could allow him to leave the table without touching his food and not worry about him passing out in 5 minutes. I was free to discipline him again and his doctor encouraged it! It was so liberating.

As you know if you have read my rantings before, I still get frustrated. I still get worried. I still have fears. I have to learn to move past them so that my soon to be teenaged son doesn’t continue to learn how to use those fears against me. We will be okay. He has a different way of taking care of himself but he is doing a good job. Together we will get through life and life with diabetes. One day he will be a confident, resourceful young man who just happens to have a life-threatening chronic illness.