Monday, May 30, 2011


Last night I was sitting down filling out my son's log book.  I have given up on him logging.  I have revamped my log book, settled for the information his pump and meter will give me and will work from there. 

As I went over some of the readings I said, "Wow! Friday's school readings were perfect. You did them all when you were supposed to.  Great job!"

"Of course I did. I am amazing!"

Amazing would be if you did this for a week.
Amazing would be if you did this for a month.
Amazing would be if you did this when you were at your father's during this summer!

"I said amazing. I never said that you should expect miracles!"

Oh my.  I guess I will have to be grateful for the days that he gets it and does all of his testing.  One day I can hope for day.

Thursday, May 26, 2011

Are you ready?

Every day we are hearing about more and more natural disasters.  There is flooding in Quebec and Manitoba. Wildfires are burning out of control in northern Alberta.  There are tornadoes going through various parts of the US.  Tsunamis and earthquakes have hit in places we would not have thought about previously. 

This means that those of us who have felt safe and believed that we lived in an area that could not be impacted by Mother Nature are being given a wake up call.  Since Diabetes moved into our house, we have been hit by two major storms that cut off roads and threatened power.  How has it changed me? It hasn't.

I am one of the many people who are not ready. I have an emergency supplies list on my website.  I know that I should create a box to be taken at a moments notice.  Evacuees in Slave Lake tell that they were given less than 10 minutes to get out of their homes.  Would that be enough time for me to grab insulin, pumps supplies, test strips and more? No.  We are way too disorganized for that.  It is time for me to change that though. Moving a lot further up my "to-do" list is make that box. Mother Nature will not be concerned if I do it later or do it now.  If she decides to take my home she will do it on her terms not mine. 

As we watch the news, I can't help but wonder how many other people living in these disaster ravaged places have also put off creating their emergency box?  Thankfully Tu diabetes has created a list of people who are gathering supplies for people like me who thought that this could not happen to them. The JDRF in Missouri is also collecting unopened diabetes supplies that can be shipped in care of:

Jennifer Conter-Jones
(Development Coordinator JDRF Ozarks)
560 Peacock Street
Rogersville, MO 65742  USA

 The diabetes community has a large heart and I know that many of us will donate and help as we can. The thoughts and prayers of my family and so many others go out to all of these people devastated by what has happened.  In the meantime, before disaster strikes my area, I think its time to get our supplies in order just in case, Heaven forbid, anything like this ever happens near us.

Tuesday, May 24, 2011

Half a step forward and too many backwards

I am beginning to think that diabetes education with a teen is a half a step forward, seven steps backwards.  The only thing that is changing is my reaction. I explode inside and am (so far) still being pretty matter of fact and eerily calm on the outside. 

After going to school with no insulin and a week old site last week, my child told me that his pump battery needed to be changed.  I asked if he had a new one and he said yes.  I said to change it right away.  NINE hours later he changed the battery.  He told me that he wanted to see how long it would last after the first warning--A lot longer than my nerves!

This weekend was a long weekend.  Like many others, we headed out for a weekend in the country.  This time he brought TWO meters. He had spare strips. He had spare batteries. He brought extra insulin and had numerous infusion sets AND cartridges.  He was happening! Well he at least had the supplies but did he use them was another matter entirely.

The weekend was filled with friends and family.  We enjoyed barbecuing, conversation and watching the kids of all ages playing in the huge lawn area.  My son wrestled, was chased by the younger kids and ate.  He ate marshmallows.  He ate hot dogs.  He ate steak and salads.  Food was plentiful and Mom provided a running carb tally along with the ever present--"Did you test?"  to which I was always told "yes".

On our last day, I decided to see how Diabetes was behaving. My son had been really active.  Besides playing, there were long walks, chopping trees, hauling gravel for the driveway, gathering rocks and building a new fire pit. It was a very active weekend. I had expected to see a few lows but also knew that I had compensated by giving lower boluses for many meals.

As I scrolled through the meter I felt my blood pressure rise.  There was a reading here and a reading there, with many missing readings in between.  He had been active.  He had been eating but he hadn't been testing! Well he had tested--at one point during the day just not during most of the ten other times that I asked him!

A cool rage was building inside.  What was it going to take to get this kid to get it?? When people were around, he just does not want to be different. It does not matter that they were very aware of his diabetes.  It does not matter that Larry's grandson had a test strip in his hair when he got up in the morning.  Diabetes is a part of our lives but he was going to keep it hidden as much as he could.  A site change was done in a separate room and testing could only be done, it would seem, when no one was around to see it happen.

I appreciate his desire to forget Diabetes.  I would love to forget it as well. I understand that it must be tiresome to carry around that burden every day.  He is great about bringing a kit with him. He takes glucose with him everywhere he goes.  I just wish he would be a lot more comfortable with using it!

I didn't scream or yell at him after seeing the lapses on the meter. I didn't punish or take anything away.  I decided to change gears this time around.  This time around I am asking for proof of every test.  Before supper, I ask to see the meter after he has tested.  Before bed, I ask to see the meter.  I will end up slacking on this. He will comply, I will become complacent but perhaps one day it will sink in and we can both be happy.

In the meantime, its a baby step forward and wait for the seven steps sliding back...or maybe, just maybe?

Wednesday, May 18, 2011

Dear Minister of Health, Why won't you cover my insulin pump?

Over the past few weeks I have received a number of emails from frustrated parents.  Their children are moving onto post-secondary school and have reached the magic age of 18.  Their pump coverage, if there ever was any, is ending and the parents are at their wits end. They fear the high costs associated with pumping will mean that their children will have to use a less effective method of managing their diabetes.

Why does coverage end at 18? Yes, diagnosis usually happens before 18 but why end coverage at that point? The disease didn't stop.  They still need a pump, insulin and supplies.  Why is this happening? Why aren't more provinces covering pumps? What is going on?

Those are just some of the questions and frustrations that I hear. I truly feel for all of these parents.  When my son received his first pump, it was given out of love.  We were at a family reunion and my son was on multiple daily injections.  He ate at specific times--which did not mesh with the times that the rest of the family was eating.  He often sat alone. It was heartbreaking. They had heard me talk about an insulin pump and decided to pool their money so that he could have one. I cried a lot that day.  The memory still makes my eyes fill with tears.

His pump supplies came in a no less emotional way.  I wondered how we would pay for them. An extra $200+ per month in a single income family would not be an easy burden but my son's health was at stake.  A friend knew of our plight.  She had extra supplies and made sure to share with us.  She found others who were switching pumps and no longer needed their supplies.  They were sent to us as well. It was a true blessing that we were later able to share with someone else.

A few months before my son's pump warranty was to expire, our advocacy efforts paid off once more and the province that we live in stated that they would cover insulin pumps for children up to age 18.  This was a victory.  We now had the first bite out of the cookie but the rest of it was still out there.  With a lot more hard work, letter writing and educating, we were able to add young adults up to the age of 25. The final piece will be to get all adults covered and that must still be done.

Back to the original question though--why 18? I think its completely political.  A small child with a pump looks good on the government who provides it.  Can you imagine depriving a three year old of a piece of medical equipment? Now look at the image of an adult with a pump.  The adult can get a job.  They can pay for their own pump. Why should everyone else pay for them? They can live without a pump.  Injections keep them alive and if they would go out and get a real job they would have their own insurance that would cover luxuries like a pump.

Okay that was pretty crass but sadly some people will view it that way.  As a person who has advocated from pumps for all ages, I tend to try to spin things in a different way.  Many adults will have jobs that provide them with the insurance to cover their pumps. Even more adults with Type 1 diabetes would have the opportunity to be in the workforce if they had a better method of insulin delivery through access to an insulin pump.  The number of adults who require pumps and do not have insurance is relatively small but their choice of occupation or employer should not dictate if they can use an insulin pump or not. 

When my son talks of a career, my mind quickly turns to "what sort of benefits will that job come with? How will you afford to cover your supplies?"  I hate that. Why should my son be limited by a disease that costs so much to take care of?

So to answer the question, why does coverage end at age 18? Because we still have to educate the public and those in government who control the purse strings why continuing pump coverage makes financial sense.  We have to teach them that the small outlay of cash to maintain the program throughout the life of the person with diabetes will mean that these same people can be productive members of the workforce for longer and have a lower chance of being a burden on the health care system because of complications.

To the question, when will our province provide any coverage? The answer has some of the same components as the last one...when we educate them.  When we make them understand that the benefits far outweigh the costs.  Only then will we see improved coverage. 

People are working on this and have been for years.  We need more people working together.  We need our voice to be stronger...and it will!

Monday, May 16, 2011

He's only thirteen, he's only thirteen...

He's only thirteen.
He's only thirteen.
He's only thirteen.

That is the mantra I was saying to myself on my drive to deliver insulin to my son at school first thing this morning. After recently bragging about his A1c, after talking to other parents about what was working to get my kid to take care of himself and be responsible, I am now back to the point of knowing why animals eat their young.

Today's drama began last night.  At 4am, I stumbled into my young son's room to test him. He was high.  I checked his pump.  He had 10 units of insulin left and was supposed to have changed his site earlier that day.  Gee, I guess I knew why he was high!  I grumbled and left the cartridge for him to fill up when he had his breakfast in the morning.

Breakfast arrived with its usual chaos.  I was cooking bread dough (toutons).  It is not the healthiest breakfast on the planet but a treat loved by our household. As I cooked, there were also dogs to be fed and my son's lunch to be made for the next day. When my own tea and toutons were done, long after my child had left for school, I remembered, "He didn't bolus his breakfast!"

Larry asked how I could know that.  I told him that with that breakfast he would have had to verify the carb count with me and he didn't.  I texted him and asked if he bolused.  No answer.  I called him.  This time I did hear from him. Nope, he had forgotten.  Ugh! I gave him a quick total and told him to bolus NOW!

A few minutes later I got a text from my son.  "I only have 2 units of insulin"
(Insert a lot of cussing under my breath) "I guess you didn't change your cartridge this morning before you went to school."
"I forgot"

(More swearing to myself as I headed to the shower).  What would he do if I were not able to just hop in the shower and run him up a full cartridge of insulin? He had two units and his breakfast required close to 12!! For petes sake! You would think after a day of alarms he would notice something like this! (insert a lot more cursing to myself and then add in the fighting back tears of frustration) When will he learn? Will he ever learn? Larry had said that I will still be asking him if he bolused when he is 35. I agreed and now wondered if he would still be forgetting everything like he does now?  We have been at this for over 11 years! When does it sink in?

And so the internal conversation continued as I got ready and drove to my child's school.  The closer I got to the school, the more I began saying "he is only 13.  He is only 13."  It was interupted by the "when will he ever learn? I brag about how much he has changed and how great he is doing and then this? He constantly forgets site changes and now no insulin despite repeated alarms??...He is only 13.  He is only 13. The mantra continued.

By the time I met him at the school I was a lot calmer than I had been but he was still very skiddish. I was waiting for him in the foyer. I could tell that he wanted to take the insulin and run.  No such luck! I sat him down and asked for his pump.  We were doing a site change right then and there as well as putting in the new cartridge and correcting.  He could not get away fast enough when I was done!

This evening when I picked him up after ball hockey, he immediately told me that he was "getting better at this diabetes stuff." 
How do you figure that one?
"Well last year I forgot insulin a lot of times, but its only been twice this year!"
And that makes things better how? You had 12 hours of alarms that you missed!

He continued to quietly stay in the backseat for fear that I may yet choose to eat my young.
Ah the joys of life with a teen with diabetes!

Sunday, May 15, 2011

Day 7: What do you get out of the DOC?

We have finally reached day 7 of Dblog week and once again it was challenging week.  The topics asked me to look at things from a different perspective.  I loved the great pictures of all things diabetes and appreciated the unique perspectives that we all come from. 

Today we are asked to discuss what the diabetes online community has done for us.  For me, it kept me sane! I began this journey into the online world approximately ten years ago.  Before that time I knew very little about computers.  I knew nothing about the Internet and had no clue as to how one created a website.  I lived in a small, isolated community and was raising two young boys with no immediate family around to rely on.  I often felt overwhelmed and alone.

My mom convinced me to join the age of technology and "go online".  I immediately searched for other people like me "Parents of Children with Diabetes". For those who are PoCWDs, you know exactly what that search came up with.  I came across my first and most lasting support source of support--the Children with Diabetes website.  They offered me answers.  They taught me what questions to ask.  They gave me the courage to stand on my own and to stand up for the rights of my son and others.  They offered me a safe place to vent and a place where people understood.

The online community expanded and I have been blessed to meet many more people who have Diabetes as an unwelcome house guest. I created my own website that attracted new friends to me.  We worked together and amazing things happened.  Over time the online community began to change.  People wanted to know more about our lives and so my blog was born.

I had written about our challenges in fighting for the disability tax credit.  I discussed the fight that was involved in getting insulin pump coverage for our province.  I also chatted about the challenges of living with diabetes.  Family and friends who didn't have diabetes did not always understand.  My blog became the place to help them have a glimpse into our lives.

It worked. Some people learned.  It also became great therapy for me. I could vent and scream (as much or more than previously) and people began to comment that they were living the same life.  I began to follow their posts as well and my diabetes world expanded that much more. 

What has the diabetes online community given to me? A place of understanding.  A group who "gets it".  A place to challenge me to rise to new heights.  A group of people who inspire me. A group of people who ground me.  Its not a bad group to be a part of!

Saturday, May 14, 2011

Day 6: Diabetes Pics

My favorite day of the week...its Saturday and all I have to do is dig around for some of our coolest diabetes shots (and try not to repeat last year's pics!).

Relaxing amidst the Rufus and Ruby bears we gave to children with diabetes.

Testing on the streets of New York City

A day spent with just some of our amazing diabetes "family"

Sometimes you just need a little down time...but the supplies are close at hand in the white cart.

With age come creativity!  The "Diabetes Boat" has tape for his infusion sets, wipes, a diabetes pencil and other diabetes supplies.

A cartridge change among friends

No matter where we go, the test kit is always with us.

Day 5: The Greatest things I have done because of Diabetes?

What awesome thing have you done because of diabetes? This was Day 5 of Diabetes BlogFest's question. I apologize for being late, but Blogger was giving me such a hard time that I didn't get this done when I should but I promise to provide an answer anyway.   

There is so much that has happened because Diabetes moved into our lives. I have met amazing friends.  I have connected with incredible networks.  I have had the privilege to speak with so many people whose families are impacted by diabetes. 

I have worked to give back as much as I can. I have done talks on dealing with diabetes and schools here in Canada.  I have written letters, articles and talked about diabetes on TV and radio.  I have advocated to protect the rights our children with diabetes in school, to get all people living with diabetes insulin pumps and better access to supplies, and a few other things.

One of the most well known of those fights is the fight to have fair and equal access to something called the "Disability Tax Credit".  Before Diabetes I did not know anything about this tax credit (the DTC). I was not that well versed on tax law period.  I have always been someone who would voice their opinion on a perceived injustice however.  When I applied for this tax credit for my son with Type 1 diabetes, I quickly saw how unjust the tax system was to people with Type 1 diabetes.

I have written about this battle before.  The short version goes as follows--I applied for the Disability Tax credit for my son.  It was clear to me that he required Life Sustaining Therapy.  I had seen what would happen if he did not receive insulin and giving him insulin required most of my day to monitor and adjust.  The federal government did not see things quite as clearly as I did and it became my job to educate them.

With the help of an incredible mentor, our story was presented to a committee who was looking at the fairness of the current DTC system.  We knew the system to be anything but fair.  To get this credit if you had diabetes you had to be strong, have an education and possibly even a lawyer. This was not right.

Through my website, a large number of people joined me in writing letters, questioning the Finance department, and contacting their MP.  By the year 2003, the Federal government announced changes in their budget.  It was first time that a disease and such a change was announced with the Federal budget.  The changes to the DTC would cost over $40million.  That is money that would go back into the hands of people living with diabetes.  It  was a surreal victory that brought me to tears.

Without Diabetes, I would never have known about this problem.  I would never have taken up the fight and I would never have been able to help facilitate a change in tax law that continues to help people living with diabetes to this day.

Wednesday, May 11, 2011

Day 4: The top 10 Things I hate about Diabetes

When I finally crawled out of bed this morning I felt, old, defeated and depressed.  I felt "dia-beaten".  Well not completely.  I refuse to ever let Diabetes beat me or my son but last night it gave us a good kick in the stomach that reminded me of why I so hate this disease.

Today's challenge for the Diabetes Blogfest is to list 10 things that you hate about diabetes...where to begin?

1.  I hate that in an instant a high can turn into an emergency that quickly shows me how fleeting life can be and a low will keep me up all night in a panic wondering if Glucagon will be needed.

2.  I hate the fact that I can never had a restful, peaceful night's sleep because highs or lows could cause disasterous results.

3.  I hate the silent way it attacks my son's organs.  With each out of range blood sugar, I picture small blood vessels quietly being damaged or dying.

4.  I hate the fear of tomorrow--wondering if we will be able to cheat diabetes and avoid complications for his lifetime.

5. I hate when Diabetes interferes with holidays--creating lows that allow him not to participate or highs that just make him feel out of sorts.  It also requires its own suitcase filled with supplies that it will not pack itself and will throw a tantrum if something is forgotten.

6. I hate that Diabetes has made me have to be extra cautious when he goes to school or away to his father's. I have to worry that he is not receiving the best of care.  I hate that he is forced to carry the bulk of the responsibility for his care, despite his age, when I am not with him.

7.  I hate that we have never been able to lose the diaper bag--it just became a diabetes bag. He can never just leave the house.  He must take glucose, a meter and so much more.

8. I hate that he is tethered to a computer just so that he may have the best quality of life. It reminds us that he is only as healthy as we work to keep him. 

9. I hate the high costs of keeping him alive and not always being able to afford the very best of care for him.  I hate having to fight to get what we have and to keep him healthy for as long as possible. I hate that so many basic things are such a fight to obtain.

10.  I hate the thought he will never truly be independent. When he is low, he requires someone else's help.  He needs to always tell someone about his condition.  If he to chooses to live on his own as an adult, his mother would still be calling all of the time to make sure he was okay. He must find a life partner who is understanding and accepting of his diseases.  I hate that life for him.

11...Oops, I am supposed to stop right? Diabetes has brought blessings to our lives but the fear and lack of control that it brings to us is something that I truly and absolutely hate.

Day 3: Diabetes Bloopers

Day three of Blogfest as proven to be my biggest challenge.  Today I have been asked to discuss the funny things that have gone wrong since Diabetes moved into our house.  I will admit to having heard some great stories over the years from other families.  There is the father who tested the dog during the night rather than his son.  There is the mother, so exhausted that she bought a "serious"  alarm clock.  The alarm, its blinking lights and siren, woke the neighbourhood and brought the police to her door out of concern, but this exhausted family slept through the clock's screams.

We are by no means perfect.  I have stumbled into my son's room at night and almost tested his brother or any other young person who happened to be sleeping in his room at the time.  I have inserted an infusion set repeatedly unable to understand why it would not stick...until he told me that I had not taken off the backing from the site.  We have found test strips in plants, washers, the fridge and more.  Our shower was covered with dead infusion sets for years.

We have the story of my mother trying to test my child at 3am for the first time.  She had sweat pouring off of her as she tried to lance his finger without disturbing him.  After a half an hour, he woke up, grabbed the lancing device and dealt with things himself.  He never let her touch him with anything sharp again.  He even did his own site changes for the first time in his life rather than letting her stab at him.

We have enjoyed asking in a rather loud voice, ARE YOU HIGH? When out in public and seeing the horrified looks of people passing us by. 

We have made fun of Diabetes.  We have created Diabetes songs to help with site rotations but to come up with a best of blooper...well we are still waiting for that one that truly sticks out.  In the meantime we will continue to enjoy the fabulous tales of others until our turn arrives.

Tuesday, May 10, 2011

Blogfest Day 2...Dear Dr. vG

Dear Dr. vG;

It is day two of Diabetes Blogfest and a letter to you seemed appropriate.

We met over 11 years ago.  I was told that you were the best and when I saw you, well, I wondered.  My son was terribly ill and a man in a checkered shirt, bushy beard, and big winter boots was to be the one to save him? I left it in God's hands and we have never looked back.

You were very matter of fact when you met us.  You left me scared and shaken to the core when you told me that the next twelve hours would tell us if he lived or died, if he had heart problems or kidney failure.  You would teach me about diabetes and whatever else I needed to know after you saved my son's life.

I remember very little of you after that.  I know you were there. I know that our prayers were answered and you saved my son's life that night. You carefully balanced his insulin and fluids, bringing him back to us healthy and full of life. 

You met us again after he left intensive care.  I can still see you standing near his room door.  You told me that he could honeymoon for years.  You warned me of impotency at 20.  You gave me the facts never worrying that I could not handle them.  You told me that I had to learn things that were foreign to me.  I had to be able to handle my son going low before we could go home. You seemed to know my strength more than I did because I was sure I would never be able to handle it all.

Over the years you pushed me.  You guided me and then left me to fly or fall on my own.  You told your secretary to ignore my faxes for help because you knew that I could answer my own questions. I grumbled upon your return, you laughed and reminded me that I had done fine. When I decided to apply and fight for the Disability Tax Credit you told me I was crazy.  You said it could not be done but if I wanted to waste my time, you would not stop me.  When we were headed to court to further the fight, you were still standing beside us.  When we won, not just for my son but for the thousands of people living with diabetes in Canada, you laughed and complaied that I had given you more work that you didn't need.

As my son grew, you pushed me again.  You knew that diabetes care I could handle but you also knew how difficult it would be for me to let go of my children--especially one that had almost been taken from me.  You made my son take care of himself long before many thought he was ready.  You asked more of him than many others of his age.  I was scared. I balked but went along with it because it had worked with me.  Your reasoning was sound but I was terrified.

I am still scared today but I am grateful for the tools you gave us.  Last year, we moved away and had to leave your practice.  When my son was diagnosed, I had asked if you would ever leave us but I never imagined that life would put us on a path where we would have to leave your care. 

You shared stories of your family.  You shared your insights and offered us food for thought. You created a strong foundation for us to go forward on and I will forever be grateful.  We have stumbled.  We have not always agreed but you allowed us room to grow and had faith in us when we may not have had it in ourselves. 

Thank you for saving my son. Thank you for showing us how to stand.  Thank you for giving us the courage to fly.

Monday, May 9, 2011

Blog Week! Day 1: Admiring Our Differences

Today is day one of the second annual blog week and I am so excited to be a part of it once again! We are starting off with a great topic that has also given me a lot of pause...Admiring Our Differences--Learning from the perspectives of those unlike us.
When I began this journey I knew nothing.  Diabetes was a vague concept. I had no clue as to what was involved or how much it would become a part of my life.  I spent years learning from other parents, researching and coming to terms with what was to be a permanent house guest.

Over the years I relished stories from parents who had children older than my son. They gave me an idea of what life may be like.  They offered wisdom, guidance and warnings of what was to come.  My favorite stories came from parents who also lived with diabetes.  From them I have learned so much. They offer a unique perspective--they live my life and that of my son.  Their information and perspective remains invaluable. 

In recent years I ventured from my website into blogging.   I still love to read the blogs of adults who have Type 1 diabetes--To know how their parents made their lives easier, to see how they have adjusted, and to hear what is important to them today shows me what can be and how I need to behave now.  I enjoy reading from other parents, their struggles, their victories and their humour.

In my own work with people with diabetes, I have also been shown a different disease--Type 2 diabetes.  I have been asked to assist many people with Type 2 over the years and I have been able to see the many hurdles that they experience. I quickly learned that it was NOT a disease specific to the obese.  I have met hockey players, marathon runners, and people that would disappear if they turned sideways but still live with a diagnosis of Type 2 diabetes.  I have gained a huge respect for these people and find myself bristling just as much for them as for my son when people blame them for "getting diabetes".

The online world of diabetes is just as diverse as the real world.  Each person offers something unique.  There are many different ways to live with diabetes.  I personally cherish those who share their tears, their laughter, and their experience. They provide a glimpse into worlds that I have been lucky enough to avoid. They inspire me.  They amaze me.  They offer me hope for tomorrow.

Saturday, May 7, 2011

Restraint in the face of...parenting a teen with diabetes!

Let me preface this post by saying that I am very proud of me.  I have not had a complete meltdown. I have not screamed, threatened or inflicted bodily harm to anyone or thing.  I have not cried. I have not bounced my head off of the nearest wall. I have quietly resigned myself to the fact that the next A1c will in no way look as good as the last one and worked hard on continuing to breathe.

The Easter holidays brings great things--in that I get to have all of my guys together under one roof.  It also brings a few days of me not having to test because my sons head back to spend time with their father.  That should be a nice vacation for me but as I have said time and time again, its a period of quiet stress. I know that diabetes care is not the same when Mom is not around. I know that reminder text messages are often ignored. I know that testing is something to be done when bored and not when required.

Having all of this knowledge and not wanting to ruin my son's time away is the reason why I waited a few days after his safe return before I turned on his meter.  I could feel my blood pressure rise as I looked at few tests, some really high readings, and then some good ones to soothe me slightly.  I calmly asked what happened to some of the readings.  There were readings at 4am but they were because he was still up and then there were no readings for eight to twelve hours while he slept.  I won't even touch on the "where was the adult who should be overseeing the care?".  I simply asked what was going on?

"I know I tested more than that.  I tested a lot Mom really! Those readings must have been on the other meter. The one at Dad's"

"Would that be the green meter?"

"Yeah, that one!"

"The one that you told me yesterday was dead, had no battery and no strips? Is that the meter that you were using when you didn't test on this meter?"

There was no comment. He swore that there had to be more testing. I just left the room with the reminder that that was not the way to maintain a great A1c.

This was last week and I have not brought it up since.  I have been checking his meter from school.  I have been pleased to see him carry his new AccuChek Mobile when we were rushing off to check on the cabin.  He is making some progress but there is such a long way to go (like the difference between "carrying the meter" and actually using it).

Last night, after I checked him and got a slightly high reading, I corrected and decided to check his pump.  I hadn't seen him get insulin from the fridge to fill his pump in a bit.  I also don't remember a site change happening this week.  The last site change I remembered was when he came back from his father's--after leaving the site in for a week, after the previous one week old site named "Timmy".  I was sure I would see that he had missed a site change...again.

I scrolled through the alarm history and sure change reminder: May 5th.  Crap! When will this kid learn???!!!??? Breathe, go to bed.  Deal with him in the morning.  I went to bed with visions of taking over his care and doing all of his sites in his butt where he has refused to ever inject or insert.  I wanted to do something to kick him into remembering. I really wanted that pump with the electrodes that worked like a cattle prod whenever its alarms went off.

I had asked people to build one for years.  My son completely ignores all alarms on his pump.  I am not sure why I bother to set them. For my own peace of mind I guess because he ignores them. Its now time to wake him up and remind him about the site change.  He will tell me he will do it after breakfast. I will threaten to insert it in his tush.  He will tell me that he will put it in his leg right after he is done eating. He probably will get it done because his cartridge is getting low.  Then again, he has been known to change a cartridge and leave a site.  He will tell me that he hasn't changed this site (insert the latest name here) because this site is working so well. I will remind him that he was high last night.  He will come up with an excuse like the fact we had pizza for supper. I will remind him that it was homemade and he doesn't have issues with my pizza.  He will mutter and shuffle off to his room. 
Oh the joys of teens and diabetes care.  I remember when I dealt with all of this stuff myself.  I forgot things but I knew that they were done as well. Letting him fly and fall is a lot more frustrating.  The joys of being a mother of a teen with diabetes...Happy Mother's Day all!!

Thursday, May 5, 2011

What to get a mom of a CWD? sleep?

Its that time of the year again. Its a time that my boys hate--Mothers Day followed too quickly by my birthday.  They stretch their brains trying to figure out what the heck to get me for both occasions and I kindly tell them to use their imaginations. Some of my favorite gifts from them have been the ones that have taken child hours rather than Mommy dollars to come up with.

Again, this does not help my youngest son to prepare for shopping.  He is not a shopper.  In previous years I would drop him and his older brother off at a few stores and they would hunt.  I would get candles and earrings.  There would be an occasional top or other item of interest.  I have to admit that they have purchased some great things for me over the years. This year he is on his own and in charge of "the shopping trip".

This morning, as I crawled back into bed, I began to think that for my birthday or Mothers Day I would love to just be able to truly sleep without worry.  I thought about this a bit more throughout the day.  To go to sleep and know that everyone will be safe and all will be okay when you wake?  To wake and be truly refreshed? Nah, can't happen!

I have said it before--I am a worrier.  I worry about my oldest son.  I worry about my youngest son. I worry about the people I love in my life.  I worry about their health.  I worry about their happiness. I worry about being able to do enough. I worry about living up to my own potential.

I don't worry about world peace. I don't worry about global warming. I don't worry about our latest election results.  I do have limits but I worry way too much.

I then moved my thoughts to what if there was a cure? Maybe I should be one of those people asking for a cure for the Mothers Day/birthday combo attack? Nope, again its not me. Its not like I don't want a cure. I would love to only worry about my sons dealing with regular teen stuff, university, driving, girlfriends, and growing up without the added pressure of diabetes looming in the background. I just don't see it happening any time soon.

For some reason I paid a little closer attention the other day to closed loop research.  Let's simply say that I was unimpressed.  I haven't paid attention to other research projects. I have not looked into xenotransplants in years. I have no idea what the DRI is doing.  Has I have said many times, my son does believe that he will see a cure in his lifetime. I am not sure that I will be on the right side of the sod at the time to celebrate with him. I can hope and support him but that's as far as it goes.

So what will I take for Mothers Day? How about simply a day of not having to nag to test or bolus or even log? A day of good blood glucose levels followed by a night of Diabetes continuing to behave.  And then a few days later for my birthday? Well of course a second day of the same would be pure heaven so let's have that one with a double shot of white rum as a celebratory chaser? No this does not mean that my son is off the hook regarding shopping later this week but if he can get Diabetes to agree, that would certainly be a nice topper on two days that could potentially be about me!

Tuesday, May 3, 2011

The Real Moms...of diabetes

Mothers Day is on Sunday and perhaps I am a bit early with this post but watching a couple of videos yesterday motivated me to do this now. As you may have seen, the DRI  launched a new campaign called "The Real Moms of DRI".  It is incredibly moving and protrays some amazing Moms that I have the privledge to call friends. The vidoes were made by Moms of children with diabetes.  They spoke of what it is like to live in their world--their fears, their reality and their hopes. 

I didn't watch all of them.  I couldn't.  I fought the tears watching my friend Kim.  Her son and mine are close to the same age and have spent a day at the beach together.  Kim's son was diagnosed at 18 months while my son was not diagnosed until 30 months.  That extra year made the difference between calculating the carbs of food spit out on his bib (for Kim) versus calculating the food he vomitted into the toilet (my life). Kim is an amazing mom who has become an incredible source of support and inspiration to me.  Her children are all beautiful and a tribute to their parents.

I also watched Brenda's video. Again, she has been an amazing friend and source of support for years.  Her daughter Marissa is an incredible young woman.  Their family has done so much to help so many.  I listened to Brenda speak of her daughter's diagnosis at such a young age and growing into a young adult who is now planning her wedding.  She spoke of the support Marissa has from her fiance and the importance of him helping her with night time lows, etc.  Brenda has shown us what our children can do with the support of wonderful people. She offers us real hope for their future.

I loved the title of this campaign and began to think of the other incredible and completely "real" moms of children with diabetes.  I have been privledged to work with and devlope friendships with so many of these amazing moms.  Moms who live every day with the worry that their child will not wake up each morning. Moms who fight for the rights of their children in school.  Moms who fight to give their children the most normal lives possible.

They are an inspirational group.  There is Karen who son's shares my son's diagnosis date and lives in the same puberty nightmare as we do.  There is Stacey and Deb who kept us going in pump supplies and goodies when we had no coverage for such things. There is Sharon who was there at the very beginning when I was at the end of my rope and in tears.  Rena who makes me laugh with her blog and is so supportive of my ramblings. I can't forget Barb, Shirley, Michelle, Darlene, Barbara, Jen, Cheryl, Bonnie,Laura, Rita, Jo, Heather, Lauren, Michelle, Julia, Beth, Melinda, JoNell, Cyndi, Rachel, and the list goes on and on and on with hundreds of other incredible moms of children with diabetes.  I am so blessed to have met and had the support of so many great moms over the years. They have all had an impact of some sort on my life, the life of my son and of course have been a huge blessing to their own families.  They are all-- real moms of children with diabetes!

Sunday, May 1, 2011

Blood the car

I recently purchased a "new to me" car.  I love it.  It is spacious and roomy.  The boys like that they can adjust the backseats to recline and have space to fight if they so desire.

The car lot that we purchased it from was more concerned with selling vehicles than they were with cleaning.  Larry and I like our vehicles to be relatively neat and clean so between its original state and a 1500km drive home, the new to me car was in dire need of a cleaning.

I lovingly scrubbed here and wiped there. I Armoralled.  I Windexed.  The car was spotless. As I was cleaning my mind began to wander.  I had a car of this exact same color before.  As I vacuumed the seats, I thought of my old car.  We had done well at keeping the upholstery quite clean despite having two young boys and a light colored car.  The car was however fraught with blood stains. I remember thinking while cleaning it one day that a CSI unit would go crazy in my vehicle.  It looked like a slaughter on the side of the car where my youngest son sat. 

Times have changed.  My last car didn't have any blood splatter to speak of.  It had test strips, but no blood.  He even thinks that it was traded in with a bottle of hand wash still in the backseat, but there was no blood.

I am hoping that we have no blood splattered in this car either.  He has grown past the stage of wiping his blood on the nearest surface.  He never was a blood sucker. Now he simply wipes the blood on his pants or a dark shirt.  When I give him the "mom look", I simply get the blank stare back and "what???".  Oh well at least my car will be safe from blood smears!