Passing the reigns

Where does the time go? Its amazing how far we have come. Last year at this time, Liam was finally doing his first site changes. As you may remember, his doctor had ordered him to be doing this by his fall visit. The day before the said visit, he finally changed his site by himself. Now its old hat unless trying to insert in certain parts of his arms. At that point he tends to yell for Mom. He also tends to ask before jabbing a well used area.

At Liam's fall visit, his doctor said that he had to take more control of his diabetes. He had to begin logging and looking at what is going on. Mom was terrified. He is so young to have all of this responsibility. What was the doctor thinking? He was thinking that it is better for Liam to make mistakes and learn now while Mom is there to hover over him than to make those same mistakes when he is off at university and Mom is nowhere to be seen. It made sense.

I am amazed and impressed at how well he is doing. Liam is not a big logger and I am sure that when this is completely up to him, he will never log another thing again. Mom is a big logger so until he is on his own he will log. Ah the power!

It is interesting to see him log though because I am seeing how much he has learned and understands. His log from this weekend for instance shows some major highs after a meal. He went up to the 20s (360+) and there is a note that says "forgot to add in syrup for pancakes". I loved that he took the initiative to look around and see "why" was he so high and found a solution! My baby is growing up.

Before making any changes now, I also have him sit down with me. I try to do this at least once a week. We sit out his charts, I highlight the highs or lows, and then I ask Liam what he thinks. Do we adjust a basal rate or should we make a bolus change? He is usually pretty good about knowing what to do. We are even getting to the point of learning when the basal rate needs to be changed.

This entire concept still blows my mind--having a twelve year old responsible for so much. It scares me and then I realize that he has been watching all of this for almost ten years now. This has been his life. He has been learning for years. He has known since he was toddling around and trying to steal strawberries from the fridge that all of his food needed to be weighed and measured. He knows the carb factors for many foods and now has the scale and calculator handy every time he steals a cookie off of the counter.

We have come a long way. I never thought we would see a day when he could steal a cookie at anytime and eat it. Thank heavens for rapid acting insulin! He is in many ways a normal pre-teen. He is forgetful. He eats me out of house and home. He is special in many ways however. He has a lot to remember in his forgetfulness. He has to take over where his body has failed him. He must provide his cells with insulin. He must remember to test to keep himself in good shape. It is not an easy life but to watch him for the most part its nothing. Its amazing.

Failing

I had a recent conversation that left me scratching my head and wondering where I went wrong.

The conversation had turned to the condition on a great-uncle. He has poorly controlled Type 2 diabetes and has been experiencing complications for years. At the moment he has lost a toe and now, because of poor circulation, is looking at heart surgery and bi-passes in his legs. Those are the facts. He and his wife have worked for years to try and deal with diabetes but they are not winning. We all hope that he will come through the operations and be on the mend soon.

The problem arose in listening to the person recount the tale in their words. The story was changed to my great-uncle having already lost a large section of his leg. It progressed to the fact that "people with diabetes" can be rather embarrassing in their quest for the sweets that they cannot have. They obviously had way too many of them before they got diabetes and that is why they are in this situation to begin with.

Okay, back up the gravy train here bud! Was I really hearing this?? This was coming from a person that I had been sending information to and speaking with for almost 10 years. What in the world was going on here??? I was speechless (and that is no easy feat).

The conversation did not end there. This person when on to speak of other diabetics who had it "really bad". They of course had heart problems and did not live long. Sadly I had my phone on speaker and I just shook my head when looking at Liam. He said "They had diabetes and lost their leg? They had it really bad?" No this has nothing to do with you. We work very hard to keep you healthy. Your legs are fine. Your heart is great. Don't worry. More of the WT??? is going through my mind.

I actually ended the conversation speechless. I just got the impression, from trying to correct things earlier in the conversation, that the truth simply had no place in this conversation. First of all, it should be well known that sweets do not cause diabetes! My son did not consume any sweets at two that caused his pancreas to fail. My great-uncle who has Type 2 diabetes also did not like sweets. His heritage and gene pool made him susceptible to this vicious disease.

Trying to say there is no having diabetes "really bad". Diabetes is a horrible disease. It is a killer. You have Type 1 or Type 2 diabetes. You may have issues maintaining control but you do not have it "really bad"--its all bad!

Obviously I need to try a new tactic for educating people. My own family are not getting it. What am I going to do?

Awareness

I have been big on awareness for years. I want everyone to know about diabetes. I want them to understand the signs and symptoms. I do not want another family to go through what we did when Liam was diagnosed. I want doctors to be thinking. I want parents to understand. I want caregivers to know the serious nature of this disease. I want teachers to be caring and thoughtful. I want to alleviate the fear of the unknown and simply allow the fear of what we do know. Its a healthy fear that garners respect for a horrible illness.

This has been a huge part of my life for almost 10 years now. I don't think a lot about it. It is part of who I am. Liam has a very different take. Its something that is a part of him but its private. Its not to be shared. Its just to be lived with until a cure is found. He will get by. Leave him be and let him live his life. This means that when his teacher asked him to tell her about diabetes his only response was "I have no restriction on what I can eat." That told her a lot! She thought he could out grow this. Boy did she learn a few things with me.

Recently I have become to see a third perspective when dealing with this disease. Its what I would have to call the car phenomenon. You know that when you buy a new car its perfect for you! No one else has a car like it. The color is unique. The styling is just yours...until you drive off the lot. Suddenly there are 10 other cars your color on your block! You see twenty other cars of the same model in the grocery store parking lot. Your special, unique car is EVERYWHERE! It turns out that the same can be said when you are introduced to someone with diabetes!

A friend of mine has two aging parents who live with Type 2 diabetes. They are able to manage with diet and exercise. The father has to test once or twice a day but his control is excellent. My friend had not really had much to do with someone with Type 1 until meeting my son. There was a kid that he went to school with. He knew that there were dietary restrictions and needles. He knew that the child didn't always feel the best but it was nothing more than a fleeting memory.

He watched us with Liam and still didn't quite get the full scope. Liam had a low and he knew that I was up through the night. He quickly heard the constant..."Liam did you test" and wondered how in the world the poor child handled that child of nagging. I tried to explain that it was necessary because Liam forgets two seconds after you tell him something. I didn't push any learning and simply answered questions.

Imagine his surprise when he went to the grocery store and a man came and sat at his table with him. There were all sorts of other places but this guy decided to sit by my friend. He told him that his blood sugar was low and he had to eat now. I am guessing he told my friend this because he started his meal with his dessert and my friend was looking at him a little odd. My friend was blown away by the coincidence. He had only known Liam for a short time and now he was meeting a stranger who had diabetes as well.

As I said, its the car phenomenon all over again because the people he met did not stop there. He took his car to a garage to do some work. The owner's wife has type 1. He took his moose to the butcher to be cut up. The butcher and his friend both had type 1. This was the biggest awakening for my friend. These gentlemen told him of the amputations and complications that they had experienced. The butcher showed him his pump and told him how important it was to his life. My friend and his brother walked away speechless. They now understood why I harped on to Liam about testing. He began to understand how terrible diabetes was. He is shocked by the number of people that he knows living with this disease but before meeting us, well it somehow never came up.

Letting go

This has been the strangest school year for me. Liam's teacher quit the day before school started. He now has a substituted until the position is filled. I struggled to know what to send to school regarding information and what to ask for in regards to Liam's care.

Liam has spent most of the summer doing his own care. He has been in charge of bolusing, testing, counting carbs, and changing sites. It has given both of us our freedom but being twelve he still forgets things. When he was home, Mom could remind him here and there and check on things. How would I handle this at school with a new teacher? Would I ask for someone to continue to hover over him or should I let him fly or fall on his own accord?

I have opted for the fly or fall approach and I am wondering if it was the right choice. I sent the teacher of the day a two paged letter on Liam's care. It tells him when Liam should be testing, how he responds when high or low, and what the teacher needs to be aware of. I have not gone in to really speak with this teacher...mind you I know him and he has taught Liam before. I am really struggling with how much to let go and how much to control. I guess its learning to guide rather than doing it all and boy its not easy!

I realized this the other day when grocery shopping. I know grocery shopping? But as I was cruising through the aisles a woman said hello to me. I was not paying attention and didn't notice her until our carts were side by side. She is a provincial minister and a lady that I have dealt with for a number of years on various diabetes related issues. She asked me how Liam was doing and what grade he was in now. I told her that he was in grade 7 and he was doing well. Mom on the other hand was having troubles letting go and knowing how much freedom to allow him. We chatted for a bit and then both went on our way.

Afterwards I began to further question what sort of accommodations does a child of his age need? Life is very different now than it was when he was six. He can handle his pump, make care decisions, and total his carbs in a blink. When he is low or high however, his judgement is still impaired. The danger of these situations have not changed and maybe they have become worse as he now "thinks" he can handle many of them without help.

I know that this is only the beginning. I know that my job has been and will continue to be, to be a teacher. I also realize that I have done a pretty good job so far. His decisions are not always what I would do. He has a more laid back attitude but its his disease, its his body. His results are what counts and the little rat somehow always manages to make good decisions.

I will continue to educate. I will continue to advocate. Liam will continue to grow and take over the care of his body and his disease.

Where were you?

Its that time of year and its amazing how crystal clear the memories are. Its equally amazing how much one day can influence every part of your life.

September 11th. The day that changed North America forever. The day terrorism was not just something that happened in places across the ocean but something that could happen here. Something that could touch us. Something that could touch the ones we love!

September 11, 2001 Liam and I had headed out to do some shopping before picking up my grandmother at the airport. We had the usual diabetes supplies and were carrying on as usual when my cell phone rang. It was Liam's father. He told me that one of the Twin Towers had been hit by an airplane and it had fallen. I told him that it had to be a mistake. There was no way that this could happen. It certainly could not happen in New York. He agreed that it was odd and we hung up. Not long after my phone rang again. This time it was the airline that my grandmother was flying on. The woman kindly explained to me that all flights in North America were being grounded because of what was going on in the US. My grandmother was in Halifax and they would let us know how she would be making it to us but it would NOT be via air.

I was shaken and quickly headed home. Like the rest of the world, I was stuck to my TV for days. I was shocked and then began looking for information on family and friends. I had recently joined a parents forum and knew that there were some parents on that list who worked in New York City. We all began to worry about their safety. I also had family that lived in the area. My cousin and his wife were living in New York. Where were they? My mom's sister in law lived on Long Island and her son was an NYC police officer. Where was he?? Thankfully everyone was soon accounted for. My cousin was suppose to go to court in one of the Twin Towers for a parking violation but his appearance had been cancelled so he was not there on that day. My mom's sister in law's son had the day off but quickly returned to the city to assist with the clean up.

This was just the beginning. We now began to worry about the fact that I lived on an island. What if supplies were cut off? How would we survive? This is a hardy area. People lived on nothing for years but I have a son with diabetes! How long could he go without real food? How long could he go without insulin? What if we ran out of test strips? Our world quickly changed. I hit the pharmacy as soon as I could. I began to make sure that I always had at least a 2 month+ supply of test strips. We had to keep at least a 3 month supply of insulin in the fridge. There were other accommodations made but stockpiling was the order of the day.

Its been 8 years now. A lot has changed. Airport security is tighter. Our way of thinking is different. I still horde supplies just in case. I still worry "what if?". Its not a way to live and I try to ignore many of those fears but it is the reality of our times. Sad....

The Towel

The other day I was giving some serious thought to my life and more importantly to the life of the website. The recession has of course had an impact on many things. Governments are not choosing to expand pump coverage or begin new programs. Individuals are being laid off and cannot often afford the "luxury" of quality medical devices.

In my own life this has translated to less money coming into the website. The website has costs associated with its daily operations as well as the long hours that I put into it each day. I began to wonder if it was worth it. Perhaps I should look into a different way to make a living. I never created the site to make my fortune. I did it to help others but I still had to survive. I added an online store and accepted advertisers to help offset the costs and keep me afloat. Lately advertisers are having their budgets cutback and revenues are down.

I felt like I was drowning. I had been looking into getting a CGMS for Liam at the request of his doctor. I had been looking into options since March. It was September and suddenly costs were making such a piece of equipment look more and more like a dream that was not currently attainable. My income was down. Liam's father was going to be laid off for the second time in a year and asking him to cover his share was going to be difficult for him as well. I began to think that I really should be re-examining my career choice. Yes, I LOVE what I do. I LOVE helping people. I LOVE working for change but we had to live. We had to make ends meet. Maybe this was not what I was meant to do. Perhaps it was time to fade into the background.

Well those were many of the thoughts that ran through my mind yesterday. I had a dark shadow following me but it didn't last. A friend suggested I look at things in a different way. I revisited my advertising fees and made some changes. I dug out old contacts and began to look into new options. I will be going through the store and finding new items to put out there for people--new styles, new sizes that hopefully will be interesting and remain affordable. I began to feel a little better. Maybe things would get better. Maybe I could still do this...maybe.

Then I got "the" email that changed it all. "The" email that kicked me back on track. "The" email that reminded me why I do what I do. "The" email that reminded me that I do make a difference in lives and can't fade into the background yet. It was an email from a friend. Her daughter has Type 1 diabetes and she recently got around to making her application for the DTC. She had a few questions and I guided her through the process. It was no big deal and I know that the money meant a lot to her as she is another victim of the recession. She had lost her job earlier in the year, so imagine my shock when she said that she had tried to make a donation to the website. She felt it was the least she could do for what I had done for her. I am glad that this came through an email because I was stunned, shocked, and so very appreciative. Diabetes Advocacy is not a charity. Donations are not tax deductible. There are two PayPal links that allow people to "donate" to the running of the site if they choose but it is not something I have ever pushed or advertised. For her to want to give back made me realize that I can't throw in the towel. I have to keep going. Life is very good and it will only get better.

Thank you so much for reminding me of that!

Back to school

Its that time of the year again....time to head back to school. Many parents love this time of year. I hate it. Its not just getting back into a routine and not being able to pack up and go when you want. Its not just the thought of cold weather coming. Its new teachers, new people to educate, new worries, new growth to deal with, new issues from other families.

Liam was to have a new teacher this year. I was nervous. He goes to a French school. The teacher's English skills were minimal. My French skills are worse. I had already organized a meeting that would involve the principal and the teacher. I wanted a translator and someone on my side.

As school opening neared I had to bite the bullet and prepare documents for school. The teacher had to know when Liam needed to test, what diabetes was about, what his pump was, his need to use the washroom, what to do in case of exams, etc. I was really not looking forward to all of this but I got it done. I had a two page sheet on basic care. Liam is doing so much more of his own care, I just basically needed someone to watch out for him when high or low and to allow him the freedom to look after his disease. I was praying it would happen.

My prayers were answered! The teacher Liam was to have quit! The teacher replacing him for now was someone that I knew and knew Liam. I was relieved! The sheets will still go to school with him but they will be read and followed. I can breathe again!!!!

Liam
Type 1 -Insulin Dependent Diabetes Mellitus
(Grade 7)

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If there is an emergency or questions regarding Liam’s care please contact
Barb at 6xx-xxx6 (home) OR 6xx-xxx0 (cell)

Liam has type I diabetes. Diabetes is a chronic, debilitating disease that can affect every organ system in the body. Type 1 diabetes occurs when the body’s immune system is triggered to react against and destroy the insulin-producing cells in the pancreas. Without the hormone insulin, the body cannot use glucose (sugar to fuel the cells of the body). As a result, the level of glucose in the blood will rise, causing symptoms. To compensate for the lack of natural insulin, Liam is currently using an insulin pump, which is attached to his body 24/7. He must never remove it. This pump does not regulate his blood glucose levels; it’s just another way to deliver insulin into his body. His Blood glucose levels can still go high or low.

Low Blood Glucose…This is an emergency situation and must be treated immediately!!!
Low Blood Glucose Symptoms
Grouchiness, shakiness, sweating, fast heart rate, pale skin, dizziness, tired or falling asleep, sudden moodiness or behavior changes, difficulty paying attention, or confusion.
If Liam exhibits any of these symptoms he may not be able to care for himself. He MUST be monitored and CANNOT be left alone. His thinking will be impaired as the brain is being robbed of vital fuel to function. He has too much insulin in his system and is in need of glucose right away! Liam has glucose tablets with him and will also have a supply of sugar in his red emergency kit. If he runs out of any of these supplies please ensure that I know to replenish them. If you run out and he needs glucose any sugar or sugar product can be used—spoonfuls of sugar, or hard candies for example.
What to do?
If Liam tests and he is below 4mmol, he must immediately have 3 glucose tablets and retest in 15 minutes. He CANNOT be left alone during this time. If his blood glucose level does not go up in 15 minutes he must have more glucose and retest again in 15 minutes. Repeat until he is over 4mmol. IF HE IS BELOW 4 mmol BEFORE GYM OR GOING OUTSIDE HE CANNOT TAKE PART IN THE ACTIVITY UNTIL HIS LEVELS REACH A SAFE LEVEL. A “safe level” before physical activity would be defined as any reading over 6mmol.
If he is under 4mmol before any exam, he is not physically able to take this test and it must be rescheduled when his blood glucose levels are above 4mmol. When he is “low”, his brain is starved of fuel and he will not be able to think or function properly.

High Blood Glucose…this can be a serious situation that can quickly become an emergency.
High Blood Glucose Symptoms
Tired, grouchiness, difficulty in paying attention, thirsty, frequent need to use the washroom, sore stomach, headache, blurred vision, confusion.
If Liam exhibits these symptoms, have him test to ensure the proper method of treatment. If he is “high” (a blood glucose level over 10mmol), he will give himself more insulin through his insulin pump. He should retest within an hour. If his blood glucose level has continued to rise, he should contact me for further instructions. His pump may not be working and this can quickly lead to vomiting and much more serious conditions.
If Liam’s blood glucose level is over 16mmol before an exam he is not physically able to take this test and it must be rescheduled for a time when he is healthier. A high blood glucose level impairs the thinking, processing and vision. He is not able to function properly at this time.

Accommodations that are necessary:
*Liam shall be permitted to use the bathroom without restriction.
*Liam needs to have immediate access to water.
*Liam will have an emergency kit containing glucose and spare supplies in the classroom as well as glucose in his school bag at all times.
*Liam will have access to the phone to call home regarding instruction on his care when running “high” or “low”.
*During a fire drill, Liam’s kit (blood glucose meter and treatment for hypoglycemia) MUST accompany him from the building.
*Liam will be allowed to leave the classroom to wash his hands before all testing times. Liam must test and record his blood glucose levels at the following times:
9:10am
Before morning snack/recess (approximately 10am)
Before lunch (12pm)
2:20pm…If Liam is low at this time, ensure that he is over 6mmol BEFORE he leaves the school grounds. If this is not possible, have him call home to be picked up as it is not safe for him to ride the bus or walk home.
Before and after returning from gym class.