Once again I am behind. I could use a thousand excuses including the fact that once again I was not feeling overly blessed after looking at the large gaps in testing shown by my son’s meter but I won’t. Friends have truly been the biggest diabetes blessing in my life as I already mentioned but there have been others. Another big one has been a deeper sense of compassion and empathy. I have always considered my self a pretty compassionate person but when a chronic disease moves into your life, you develop a new perspective on things. I saw our universal health care system in a less flattering light. I began to understand the financial toll that diseases can create on families. Its not bad enough to have a family member who requires life saving therapies or drug but having to reallocate resources to manage that can be exceptionally stressful. I began to understand how Alzheimer and cancer patients’ families felt. I understood their battles with government and developed a first hand knowledge of something called a “formulary” which is government talk for the drugs that they feel warrant coverage under their provincial health care systems and the ones that they deem extravagant. My heart grew that much bigger as I began to get a glimpse of the fears of parents who deal with severe allergies and asthma. You never know when a life threatening problem will happen. Nights are not safe. Schools are not safe. Your children being alone is a constant worry. Diabetes is a nightmare. Its costs are insane without extensive private medical insurance. The blessing in all this is that I have developed an empathy for people who live with a variety of other disease. Diabetes is hard but it is not the only disease that is hard. We all have our “thing” to deal with and a blessing of diabetes is that it has shown me this in a broader light.
With the American Thanksgiving holiday coming up, I have seen many friends noting the things that they are grateful for throughout the month of November. Gratitude is a great practice and something that I promote in my Life Coaching practice. It is also something that I try to incorporate into my own life.
Mike asked that we blog about a few of the blessings that diabetes has brought into our lives. Ideally you would look at one blessing per day for the week of November 19-25th. Since I am a day late in getting started, I will try to come up with two for my first day…
Actually the top two are simple and intertwined. My diabetes family and CWD conferences.
Its has been almost twelve years since I “found” my family. I had just gotten onto the Internet for the first time. I searched “parents of children with diabetes”. I was instantly sent to a website and a parents email list. There I posted a question about a battle I had been having with my toddler–trying to convince him to eat after giving his insulin. We had been experiencing tears, vomiting, and terrifying lows. I was at my wits end.
Within seconds I received two emails back from parents telling me what I already knew but for some reason could not do. They told me not to give him insulin until after he ate. It was so simple but until another parent told me, I could not grasp NOT giving my son insulin.
That was just the beginning. Over the years, these face-less friends became my support. They were there through the good times and the bad. They understood the bittersweet feeling of having your four year old being able to lance his own finger and draw blood. They understood the exhausting nights and the drag your butt days. They were there to pull me out when I just wanted to curl up and hide under a rock for awhile. They were there through diabetes fights, political battles and personal struggles. No matter what was going on, there was always a strong shoulder to cry on and firm hand to push me forward.
Beach party with our amazing Friends for Life!
As the years went by, I was able to share the wisdom taught to me with others. I was also able to meet some of my nearest and dearest friends in person. I travelled to visit some at a beach party. I later travelled to visit others at what has become the foremost diabetes conference in North America–CWD’s Friends For Life. It is the one place on earth where friends connect and friendships truly are made for life.
Just a few of the amazing people that I am blessed to call “friends”
Imagine how blessed I felt when I was asked to not just attend a FFL conference but be a part of the staff? I was honored I was humbled. Each year that I attend, I have to pinch myself. I am surrounded by the most amazing people in the diabetes world. Parents, doctors, nurses, educators and advocates…and me. It truly is the high point of my year when I am there!
Diabetes, despite its brutal nature, has brought many blessings with it. The two that make each day a little easier are definitely the incredible friendships I have made and the gathering of those friends at FFL Conferences each year.
Lately diabetes has been taking a backseat in my life. I have been busy with a lot of major changes and dealing with other stressors in my life. I have left the diabetes care to my 15 year old. Everyone says that its his disease anyway. I see the dead test strips throughout the house. I see him bolus and after a lot of nagging, he does change his infusion sets at least once a week.
Yes, I have been frustrated by the site change frequency. I have also taken time away from focusing on my own issues to give him the regular…do you want lumps and bumps all over your body lecture. To which I get the usual response of “If I was a UFC fighter, I would have all of those lumps and when someone punched me they would squirt blood.” Yes, I then hit my head against the wall and ask “why me?”
I decided that it was time for things to get back to normal…or at least as normal as they ever are in our world. I asked my son for his meter so I could see how things have been going in my virtual absence. I knew how the nights were going. I was testing them and had made some changes but what about the rest of the time?
Well, we are left to wonder about the rest of the time because there are serious lapses in testing! I wanted to scream. I wanted to cry. Was he ever going to learn? I asked him what exactly we were going to do about this. Of course he had no answers and neither did I. Did I mention that I wanted to cry?
I will attempt to go back to the hawk-eyed mother I have occasionally been in the past. I will check his meter more often. I will nag and adjust. I will pray that he really does “get it” one day and take some solace in the fact that he does bolus for his food…well most of it anyway. Give me strength….
Today is World Diabetes Day. This date was chosen because it was the birth date of the famous Canadian, Sir Frederick Banting. Dr. Banting of course is one of the scientists credited with the discovery of insulin.
Insulin is the life sustaining hormone that allows my son to annoy me and live his life to the fullest today. On March 17, 2000 I saw firsthand how vital insulin is to a body. That is the day that doctors finally realized that my son was no longer producing his own insulin. He was dying before our eyes. His body was surviving by eating itself and in a two year old, there is not a lot of body to use as nourishment. He was given 12 hours to live. But live he did and today I remain eternally grateful for Dr. Banting’s discovery.
When Dr. Banting made his discovery he felt it was the first step to a cure for diabetes. He did not envision that over 80 years later we would still have no cure for this disease only his life sustaining vials of insulin. He did not know that for many, insulin would be a costly extravagance. He did not know the difficulties that people in both first and third world countries would have in obtaining this life saving therapy.
In his honor, we continue to fight to make the world better for people living with diabetes. In Canada we work to get our provincial governments to cover life sustaining insulins and devices that will reduce the risk of complications in later years. We lobby our federal government to provide more funding to groups and organizations who are working hard to improve technology and ultimately fulfill Dr. Banting’s vision of curing diabetes forever.
Today, I am wearing my blue for my son who lives with this horrible disease each day with dignity and courage. I wear blue for hope…hope that his life with diabetes will improve. Hope that he will never have to struggle to afford his supplies. Hope that one day he will say “When I had diabetes I wore an insulin pump.”
Today I am wearing blue for the millions of other people living with diabetes, many of whom I have never met. This disease takes a horrible toll on both those living with diabetes and those who love them. It also has brought together many amazing people and for that I am extremely grateful. So thank-you again Dr. Banting for saving my son’s life. Thank-you to researchers for not giving up and working to create a better life for my son and others living with diabetes. Thank-you to the many friends, family, and followers of this blog, my Facebook page, and the website. Your support for these past 12 and a half years have given me strength and courage to continue each day.
Its weird. When we get our A1c, I hate telling other people what it is. We work hard but I know a lot of other people who work hard too. We use a pump but they use a pump too. The only CGM we have is our own regular testing. Despite all of this, I have friends who struggle to see an A1c under 8. We have rarely, in twelve years, seen one over 7. I have no delusions of this lasting forever. I know my son will hit his own walls when Mom is not around. I know that I have provided a cushion for those years however. I have been told this cushion may help him during those rough years reducing the chances of complications. I pray so. Despite that fact, I rarely publicly state his A1c. I feel guilty because we succeed where others struggle. I don’t see us doing anything different. Maybe we are just lucky. My son actually sees diabetes has relatively easy! That scares me. He says, “its simple. You count the carbs. You give the insulin. You test. You adjust. What is the big deal?” Wow. I know its not that simple but perhaps it is good that he doesn’t see it as that big of a burden or a problem. I know he sees it as an annoyance. I know he sees it as something he would rather ignore but it does not appear to be a “challenge” to him. It is simply his life. I guess that is one thing to be grateful for.
Our life has been a little chaotic of late. In between boxes, garbage bags, and piles of “things” looking for their proper place diabetes has taken a back seat as much as possible. Maybe that’s why it really hit me the other morning…
I was sitting at the table enjoying my morning coffee. Breakfast had been made for both boys. Their lunches were packed and waiting for them on the counter. My youngest had finished his meal. I gave him his carb count and his insulin had been dosed as he ate. He got up from the table and put his dishes in the dishwasher. On his way out of the kitchen, he noticed the box of Timbits on the counter from the night before. His hand darted into the box and he popped a little morsel into his mouth. I yelled out to his back “Don’t forget to bolus for that!”
That is when it hit me…he could not just walk by and grab a snack. He had to bolus for each piece of food that touched his lips. I know that this is nothing new. This has been our lives for over 12 years. Despite that it still managed to make me stop. My heart broke a little bit more. It was such a natural act…and for him so was the grabbing of his pump while grabbing his donut hole.
Its November and for those of us living with diabetes that means Diabetes Awareness Month! What better way to start off Diabetes Awareness month than with a dreaded 5 mmol (90mg/dl) bg level. I have mentioned time and time again how much I truly hate that number. Five means he could drop low or he could be perfect. It should be a number to make me happy and if it was three in the afternoon instead of three in the morning I would be happy. Five at 3am is NOT a good number. Its a torturous reading…perfect for Halloween I suppose.
At 2:30 I stumbled into my son’s room. I was tired. I am getting used to being able to see at night thanks to a very recentiLasik procedure. When you have not seen properly in 30+ years, it is actually something that is very hard to get used to. The fact that I have to wear space goggles on my face that make me feel like a character from the movie The Fly does not help things. Has I said, all of this was topped off by a perfect, lovely reading of 5 (90). Crap! I was going to have to try to stay awake and see where things were headed. Would he be low? Did I have basals set perfectly and he would be fine? What the heck would happen? Where is a CGM when I need it? Oh yeah, the one I want is not in Canada and my son thinks that they are a horrible idea anyway. More nightmares! I headed back to bed to wait. I would simply doze for a half an hour and see where he was trending. I haven’t been sleeping overly well lately and I am always pretty alert when I have to stay awake to retest. This would not be a problem. Wrong! I woke up at 4am! What’s with that??? I went to check again not sure what I would be walking into. This time he had dropped however slightly to 4.9 (87). Time to shovel the glucose into him. Not enough to make him high but enough to cover any drop that could occur. How many tablets would that be? I guessed four of my giant rockets. They are a little less carbs than the normal glucose tablets. It was 4 am and I really did not want a lot of math involved at that hour. I began to feed my son. He ate the first three fine. At that point, I guess he had had enough of me and subconsciously did not want the dreaded glucose tablet hangover. He rolled over so that I could no longer access his mouth. I had to tell him to open up and take the last tablet. I went back to sleep sure that I had avoided a crisis and hoping that I did not send him too high. This morning he woke up to a lovely 6 (108) and surprisingly no complaint of the taste of glucose in his mouth! What a great start to November 🙁 Where is that cure?????