Graduation + Diabetes + Long Distance=DMomma Stress

Hair done? Shaved?

Hair done. Not shaving.

Don’t forget that I want pictures!

Will do.

Insulin full? Site good? Meter in your pocket? Got a cough drop in case you go low?

Yep, but I forgot the cough drop.

That is part of the conversation between my son and I as he prepared to attend his girlfriend’s grad.  As he was getting ready, I could picture things like a site failure during her procession.  I could imagine him not having enough insulin and sitting at their meal wondering what he would do. I could see him dropping low after hours of dancing and festivities.  I wondered about the alcohol and events that would occur after the ceremony. How would he handle all of it?

Mom’s worry.  That seems to be their job.  grad dance

Son’s on the other hand? Well, in my case, he allows his mother to carry the worry load.  When asked if he had some glucose to take with him, he replied, “I’ll grab a cough drop.”  Hence the cough drop reference in our conversation.

I asked about alcohol.  I got “I can handle it.”  I worried.  I do not condone underage drinking but I am not a fool. I know that it can and will happen. I have talked to my son about it. I am sure that his team has as well. I have shared great posts like this from Diabetes Mine.  He says that he has it covered. I have to believe him.

He made it through her graduation ceremony and the after party.  He claimed  no ill effects.  He did not attend his own graduation ceremony but did manage to show up for a few group photos (minus any suit).  Just as important…Mom survived as well.

grad photo

 

 

 

JDRF 2015 Telus Walk To Cure Diabetes

jdrf walk
I have been involved in a number of walks to raise money to support diabetes charities over the years.  I have organized walks. I have fund raised for walks.

This year I was asked if I would take some time to learn and write about the Juvenile Diabetes Research Foundation’s Walk to Cure Diabetes.  I am always willing to promote diabetes related events so I gladly said yes.

My son has never been involved in a JDRF walk.  When he was younger, outreach had not yet made it to our small community but we did experience the value of getting together with families living with diabetes.  Being able to see other people testing their blood, counting their carbs, injecting or pulling out a pump was a great way for us to feel less alone. I therefore knew that an event such as the JDRF Telus Walk to Cure Diabetes would mean a lot to a lot of people.

In order to fully understand what is involved in a walk, I was invited to attend the Community Engagement luncheon in our city back in March.  Despite an impending spring snow storm, the room was full of amazing people and incredible energy. It was a wonderful experience to sit and listen to people who lived with diabetes and those who didn’t explain why they were involved in the walk.

I sat at a table with one of the walk’s Youth Ambassadors.  She was a lovely young girl who felt that her diagnosis had opened many doors for her.  A new volunteer also sat with us.  She did not have diabetes herself and was thankful that her child did not have the disease either. She was there because of a friend.  Her friend’s child was living with Type 1 diabetes.  After seeing up close what it was like to live with diabetes, she wanted to do her part to help fund raise for a cure.

It has been over two months since I went to the engagement luncheon.  I have begun to see walk teams’ shirts and donation pages appear on my Facebook feed.  I see people searching for new ways to raise money and I notice the excitement building as they look forward to getting together with friends at the event in June.

The JDRF’s theme for this year’s walk is in keeping with their new motto of turning type one into type none.  They are asking participants  “What Type are You?” They want those involved to share what type they are using the saying “I am the ___ type.” on their fundraising page.  JDRF employee and awesome person living with Type 1 diabetes, Alanna has stated that she is the “I don’t want my job any more type“.  A friend and fellow advocate has indicated that her team is the “we can achieve anything type“.

According to the JDRF website, there are over 70 walk sites this year with over 45,000 participants.  If you are interested in finding out more about a walk in your area, click here and then select your region.  Walks are scheduled for June 14th but check with your walk location for the exact time and place.

If you are not interested in walking this year but would still like to get involved, contact your local JDRF chapter.  Volunteers are always required to make events like this special for everyone involved! If you can’t make the dates, don’t forget that you can still donate to many of the great teams online through various safe pay options..I did!

Diabetes Blog Week Memories

How did it happen? Diabetes Blog Week is coming to an end already. I admit that it has been a huge challenge to take part this year.  It happened to fall on the week of my stepson’s wedding.  This meant that while I did my very best to have posts ready to go a bit ahead of time, I really didn’t get the chance to read as many posts as I wanted. I plan to make up for that next week!

I am not sure how many of the past six years of Blog Weeks that I have participated but I have to thank Karen so much for doing this! Each year I find the topics intriguing and find more and more people to follow and read.

As I said, I still have many more posts to read (and I do plan to read a lot more and continue reading them long after this week has ended). Of the ones that I have read, a few have struck me for different reasons.  Thank you to Arden’s Day for opening your blog to guest bloggers.  I have enjoyed Scott’s posts and of course loved his book but his post from Kelly Griffin really touched me.  My son is very private about his diabetes care and her words gave me a better understanding of him.

I absolutely loved reading Rick Phillips post called Wearing your Pants Backwards.  This quirky view on life in general was perfect and fits very much with the attitude of myself and my children.

The absolute, without a doubt best, more inspirational and moving post that I read this week had to be from Life on T1.  Alanna’s open and honest post struck me and brought tears to my eyes on so many levels.  I have heard many wonderful things about Alanna in the past but when this post came up in my news feed…well do yourself a favor and read it especially if you are a woman. Heck, if you are a person, you should read Alanna’s Clean Out.

Of course, Diabetes Blog Week also gave me a chance to catch up on the writing of old favorites like Mike from the Corner Booth. Whether posting on his own blog or writing for Diabetes Mine, Mike’s writings are always great to read.

Thank you to everyone who stopped by this week to read and leave comments. I appreciate your kind words and I look forward to keeping up with many more of you in the coming year!thank-you

My Favourite Blog Post?

 

Today’s Diabetes Blog Week prompt asks for my favourite of those that I have written.  Seriously? That is a challenge!! First, I don’t write thinking,” Wow, I am awesome!”  I used to write thinking that no one would ever read what I had to say.

As I realized that they did, I just wanted to post things so that other parents would know that they were not alone. I tried to find humour in some of those events.

I have written posts that have come from my own struggles and guilt as a parent of a child with diabetes.  The post written after my son told me that he wanted to move back with his father for his final two years of high school was definitely one of the hardest to write. Trying to find a balance of honestly, emotion and not sounding as lost as I felt was a huge challenge. The positive comments made me feel better for sharing.

I have tackled topics that many of us want to ignore like Dead in Bed but lately I have tried to educate through posts like my most recent Dear John and Jane Public and looking at the cost of diabetes care if it were me and not my son with the disease.

What is my absolute favourite? What makes me smile? Any post that shows my son’s great attitude and quirky sense of humour.  There have been many comments over the years that have come out of nowhere. Some of them I have caught and  published like when he told me…”“You know Mom, if I had to explain to someone what it felt like to be high or low all I would have to do is tell them to watch Suzie and Sweedums eat breakfast.  Suzie is what its like to be low and Sweedums is what its like to be high.” Suzie will  demolish a bowl of food before I have put food in Sweedums’ bowl.  Sweedums will eat one piece of food at a time, analyzing it and taking over to a mat to eat every single morsel.

The one post that will make me smile every time is when I described my son’s logic when it came to site changes. He was a day late doing his site change.  I was leaving him to it when he stopped me asking me why I was leaving?  When I told him that he was more than capable of doing a site change he replied…

“Yes, but Mom, you realize that you only have four more years to do site changes for me. I will turn 18 and move on and you will never have this opportunity again.  You should be savouring these times just like you say how important it is to share each birthday with me before I leave home. Actually, think of these site changes as being just like my birthday but every three days.  Treasure them. In fact, we can make it like my birthday if you want. You can even buy me presents for each site change done!”

Ironically, he is right about me missing it that is. I still get to do site changes when he visits. I don’t miss diabetes or harping on him to do a site change but since it is a part of him and I miss him, well I do kind of treasure those times when I did do his changes.

 

The post just once again showed his unique perspective that some days makes me want to bang my head against a wall but most days makes me smile and proudly say “Yes, that is my son!”Celebrate

 

 

Bolus Worthy

Today’s Diabetes Blog Week prompt asks about food.  More specifically it asks us to describe a typical day of eating.  I asked my son at the beginning of the week to do this for one day and send me what he ate.  He told me that yesterday morning he was low so he had some orange juice and around lunch time he ate two cereal bars because he had run out of bread for sandwiches.  This seemed like a pretty light day especially for him.  He said that since I wanted to know what he ate, it was easier to eat less.  So much for that idea!

Like many people with diabetes, my son has heard, “Oh I would offer you one but I know you are a diabetic and can’t have that.”  Of course, like everyone with Type 1 diabetes, the only thing my son can’t eat are poison…and cookies with poison. For every other food, he does his best to balance insulin to what he eats.  And being a teen, he can eat!

I am not sure if it is because of  diabetes and spending a life time educated on nutrition and exercise, if its him or if it is a phase but my son has become very mindful of what he eats.  It is not uncommon for him to sit down to a tin of tuna and a cup of green tea.  He enjoys his fruits and yoghurt.  He can make a mean smoothie (according to him).

He is human however and he is a teen, so he also enjoys certain treats especially when he comes to visit Mom.  He loves his grilled cheese sandwiches. He can eat a pot of boiled eggs for breakfast if given the opportunity. He requests homemade mac and cheese when he arrives.  He enjoys eating snowballs and can demolish a berry pie if allowed.  He can nibble at a tray of cookies or leave an apple with nothing but the stalk.

When he goes to A&W and orders a Grandpa burger meal, does he stay in range? Rarely but he also does not do it every day.  Each time is a challenge to balance the fat, protein and carbs but he does it. He feels it is definitely worth the effort.  Those high effort, high insulin foods are known as “bolus worthy”.  They are the foods whose taste far outweighs any aggravation after the fact.

At 17, my son is very aware of his body.  He lifts weights.  He watches his food intake, not just because he happens to have diabetes but because he wants to stay fit and healthy.  I think he has managed to handle the issue of food very well. Nothing is off-limits–a banana split for lunch? Why not!  Anything in moderation–well his idea of moderation anyway!

Homemade black forest birthday cake...definitely bolus worthy

Homemade black forest birthday cake…definitely bolus worthy

Going to School with Diabetes Has Changed

Today’s prompt for Diabetes Blog Week asks what changes we have seen since diagnosis.

In the past 15+ years, we have seen a lot of changes.  We have seen 5 second glucometer results instead of 30 torturous seconds. We have seen long acting insulin, smart pumps and now sensor augmented pumps.  We have seen Continuous Glucose Monitors go from blinded instruments that you could only get from the hospital to tools that you can wear every day to watch real time trends!

One of the biggest changes that I have seen since my son was diagnosed with diabetes however is how provinces, school boards, and schools are now dealing with children with diabetes here in Canada.

I first began dealing with this issue when my son was 3.  He still had a year to go before he would enter the school system, but the school knew about my knowledge of diabetes care.  They wanted a heads  up on what to expect when a recently diagnosed student returned to school.  Together we were able to explore the roles and needs of both staff and student.

I spent time looking at what was being done in other provinces and other schools.  The results shocked me.  With the exception of New Brunswick, most areas had little to no policies for children with diabetes in schools.  The only thing that they tended to note was whether or not (and usually it was not), they would administer insulin in school and where the insulin was to be kept.

At first I was shocked. Diabetes was not a new disease.  How could it not be dealt with in the school system? Easily…in previous years multiple daily injections, home blood glucose monitoring and insulin pumps were not the norm in diabetes care.  Times were changing and school policies needed to change as well…and they have.

In 2015 provinces such as Newfoundland and Quebec now also have provincial policies in place.  Provinces such as British Columbia are working with their nursing staff to see better protection in place.  In other provinces, people are still working to find something that works for all parties.

The big difference is that today, provinces and parents are talking. Today, school boards are contacting myself, the Canadian Diabetes Association, and parents of children with diabetes to ask what our children’s needs are. There is a willingness to learn and a willingness to create change.

This does not mean that the problem of care for children with diabetes in Canada is solved. It does not mean that parents have no concerns when they send their children with diabetes to schools.  It means that in more places, there are less concerns. It means that in more schools there is already education and policy in place. That is a wonderful thing.  It shows that over time things can change for the better. I am positive that the next 15 years will see many more leaps and bounds for our children with diabetes as they return to school.

diabetes in school
Heading to school with diabetes can be stressful

Swept away and retired to a desk

Today’s prompt for Diabetes Blog Week asks what is that one thing that we are still clinging on to that we need to let go? What in our diabetes closet needs to be cleaned out?

Honestly, I was going to use a wildcard for this one. I thought it didn’t apply to me any longer.  Diabetes does not live with my full time any more so what could I possibly need to junk out? We cleaned out most of my son’s diabetes supplies when he moved.  Anything left here he needs when he visits. Obviously this was a topic that I was going to have to give a miss. Or maybe not….

sweeping up
Sweeping out the old

There is something that I have been working on for…cough, cough, almost….two…cough…years.  It is something that I need to let go of, clean out, sweep away. My challenge is to sweep away that need to know all and me hands on 100% of the time.  It is now physically impossible and thinking otherwise is emotionally draining.

I have to adjust to the role of no longer being that person in charge. Learning my new role as the person standing in the office listening to what is going on in the trenches but removed from the actual events is a huge challenge.

I no longer have to wake up at various times during the night to test my son. That has its own guilt.  I still wake up through the night out of habit but as time has gone on, I no longer wake in a panic wondering if he is okay and if he is testing.

I have gotten better at having him text me readings.  Originally I wanted to know every reading.  I would stay up to all hours just so that we could talk and he could tell me what his readings had been like.  That didn’t work. He did his best to be busy when I wanted to call and talk.  I had to get rid of that need to know. I had to learn that it was now truly his disease.

We still talk daily.  I don’t know his readings from day to day.  He calls me when he has a problem. We troubleshoot issues together.  I still work on being okay with the fact that I don’t know his A1c.  I still struggle with not being able to hook him up to the technology that I want him to use.  Sweeping out the DMomma who is hands on and replacing her with the DMomma who is just there to help out when things get a little messy or he needs a break has truly been my biggest challenge.

As I have have been swept out of the trenches, I found myself struggling to understand my place on the sidelines.  I worried that I had not prepared him enough. I worried that I would not matter any more. I worried that I would no longer have a role in that community of diabetes parents that had been my home for so many years.

Just like cleaning our house can give you a new perspective, cleaning out my role as a DMomma did as well.  I have seen my son thrive on his own. I have seen him put to use what he has been taught and develop his own confidence.  Standing back has allowed me a new role in the diabetes community and in my son’s life…and its not that bad!

Sorry but its private

Day two of Dblog Week asks what we keep private. What is it that is off limits for sharing with our readers or maybe even family and friends? What will you never read about on these pages?

This is actually an interesting topic.  Once upon a time, there was almost nothing that you would not read on my blog pages. I was an open book in part because I never thought anyone else would read what I had to say.  It was my personal journal, sharing my most raw emotions. As friends and strangers began to read, things began to change.

I no longer write when emotionally charged. I still write posts with emotional attachments but I try to wait, write, re-write, wait, and then post after the fact. I want people to understand some of what I deal with as a parent of a child with diabetes but I don’t want them to lose the point in a sea of anger or frustration.

I no longer write my son’s name and very rarely the names of anyone around me out of respect for their privacy.  My son spent a lot of his early life with diabetes in the spotlight.  I wanted people to know more about the disease but I never considered that he’d preferred anonymity.  He did.  At 16, he laid down the law.  He wanted his privacy. He did not want to featured in diabetes related campaigns or any other displays.  I have learned to honour that.

Over time my life has changed and so too have my blog posts.  I now seek out topics that advocate and highlight issues of awareness.  Our life with diabetes has changed. It no longer consumes me 24/7.  It is simply a nagging thought in my head but a burden for my son to now carry almost solely on his own.  I can no longer moan about sleepless nights but I will still share my feelings of guilt at being able to sleep.

I will still share many emotions and experiences in my blog posts. I try to keep them real and from the heart.  Yes, there are a few things that you will never read about.  There are a few things that family and friends will never understand either but the important things that educate, advocate and raise awareness will always be shared.

Private!
Do not enter

 

 

Diabetes Made me Do it

Its the first day of another Diabetes Blog Week! I am so excited to be a part of this wonderful adventure once again.  As a blogger, it allows me to have topics chosen for me and write about topics that I may not have otherwise thought about.  As a reader, it gives me the chance to see many new blogs that I may not have come across before.  In other words, its a win-win week that I hope you enjoy as much as I do!

Today’s prompt asks me to share  what I have done because of diabetes that has made me the most proud or what good thing has diabetes brought into my life?

Obviously I am proud of the way my son is learning to handle his own diabetes care.  How much of that is up to me and how much is just his personality? We will never know but he takes each day in stride and never seems to complain about his lot in life. I can’t ask for much more than that!

For me personally, diabetes has brought an incredible network of friends.  Those friends have encouraged and inspired me to be involved and help to create changes to the world of diabetes in Canada.

It amazes me to look back at how long I have “known” some of these people.  There are the core group of parents that I met on the Children With Diabetes Parents Email list almost 15 years ago.  They have been with me through the good and bad.  They have been there with a hug or a shove in my personal life as well as in our life with diabetes.  The connections made there have been some of the dearest of any I have ever made.  They are truly the very, very best thing to come out of a life with diabetes.

With their encouragement and prodding, I began to look to see what I could do to better improve the lives of people with diabetes.  It led me into two areas–both dealing with fairness.  First there was the issue of fairness in our tax system.

Not long after my son’s diagnosis, I learned of a thing called the Disability Tax Credit.  In reading the description, I knew that my son qualified. In time,  I came to learn that the Canadian Revenue Agency did not always see things the same way that I did.  Some people with diabetes were qualifying, some weren’t.  Some people with diabetes were fighting for this right in court, some weren’t.  I sought to equalize the playing field and make the powers that be understand what was really involved in living with diabetes.

During this process, I met more amazing people.  There were families struggling to get by. There were adults who just wanted to be treated equitably and see some financial relief from the burden of diabetes care costs.  I interacted with many people, some I still hear from and others I see in posts on various social media platforms.  Each one was vital for their support and their belief in what we could do.

Together we did make a difference.  Today, all children under the age of 18 are given the DTC upon receipt of the T2201 from their doctor indicating a diagnosis of Type 1 diabetes.  Adults are also eligible for this credit but still must first prove that they are intensively managing their diabetes care and that it takes over 14 hours per week.

When I read posts online about people getting this credit or when  I read others advising their friends to check out my website for tips and information, my heart swells. I know that I have made a difference.

The other thing that I have done because of diabetes that makes me proud is my work with parents and educators in regards to sending children with diabetes to school.  This issue has been something that I have worked on since my son was 3 years old.  He will soon be 18.  The situation is not perfect, but I am happy to say that there have been profound and real changes in how diabetes care is viewed in many Canadian schools.

When I began this journey, the only province to have any sort of legislation or provincial policy in place was New Brunswick.  To date, provinces such as Quebec, Newfoundland, Nova Scotia and BC all at least mention the care and treatment of children with diabetes in schools in their provincial education policies.

We still have a long way to go but I no longer receive numerous telephone calls each fall from parents struggling to get help.  I hope that that is a sign that there is more and more support out there for families and students.

Diabetes is a crappy disease. It ruins holidays. It never goes away. Its unpredictable at times and never takes a rest.  It has however brought me a network of friends that have kept me sane throughout the years.  It has allowed me to help in areas that I never would have known about otherwise. For those things, I am truly happy to be able to say that “Diabetes made me do it!”d made me

 

 

Dear John and Jane Public

Dear John and Jane Public,

I understand that you probably know very little about diabetes.  Before March 17, 2000 I was just as ignorant.  Not knowing is okay. There are many things that I don’t know about but I am always willing to learn.  I wish that more of you were as well.

If you open your mind and learn, I am hoping that you will also begin to have more empathy and feel less inclined to point blame at the victims.  For some reason, a lot of the general public thinks that it is okay to blame people with diabetes for their condition.  it doesn’t matter if they are 2 or 92, many people feel that if they have diabetes they must have done something to make it happen.

In making that assumption you are hurting people like me, my child and many others who did nothing more than be born with genes that led their bodies to attack themselves.

You would think that after 15 years I would have a tough skin–I do.  I am used to well meaning people passing judgments on food that my child can or cannot eat.  I am used to people telling me that they understand my worries because their grandmother developed diabetes last year at  age 75.  I am used to people saying that my child must have it really bad because he uses an insulin pump.

I have learned to calmly tell those kind health care providers who ask if he will outgrow it that, no, he can’t grow himself a new lung and he won’t grow a functioning pancreas any time soon but thanks for asking!  I have learned to smile when I watch a TV show that suggests that they can track a missing person through the GPS on their insulin pump.  These are silly things that just get filed under “Things you deal with when you live with diabetes”.

John. Jane.  I do have to ask you one thing though.  You see, my skin has thickened. I know that I did not cause my son’s diabetes. He never had chocolate bars or was force fed jube jubes as a tot.  He had breast milk and few processed foods but that was not enough to protect him from developing diabetes.  His body still failed him.  It attacked himself leaving him terribly sick and almost killing him.

My genes may have played a role in this attack.  I have no family history of Type 1 diabetes and very little of Type 2 but I will accept that somewhere in my genetic makeup, there may have been some code that when passed onto his tiny body, created the havoc that led to his diagnosis.

I will accept that my ignorance of illnesses like diabetes and my faith in the medical community delayed my son getting treatment much later than he should have.  I believed the ER doctor who examined him and told me that he just had the flu.  That misdiagnosis almost cost my son his life but I will take the blame for listening to him even for a short while.

As you can see, I don’t need you to add to my guilt with nonsense. There are enough real contributors to keep me feeling horrible but they don’t.  Keeping my son alive and healthy for the past 15 years have been a greater priority.  It has been more important to learn about his disease, get him the best medical treatment, and teach him how to take care of himself than wallow in guilt and blame.

So John and Jane, what I am asking from you is for a bit more understanding.  You don’t have to know what my life has been like. You don’t have to know what my son deals with every minute of every day.  If you would like to learn more, please ask me and I will give you as much information as you want.  What you do can for me however, is to think before you speak.  You can think before you laugh at jokes about people getting diabetes.  You can think before you spread false information.

Please do not use scare tactics and tell your children that if they have one more candy out of the dish that they will get diabetes.  This is no more likely than your eight year old dropping dead of a heart attack because they had one more french fry.  You are right to teach your child the importance of healthy eating.  You are right to tell them how important eating balanced meals and staying active are but don’t make them think that the child in their classroom is responsible for her diabetes because she ate too much candy.  It isn’t fair to your child who may not want to be friends with someone who has such poor willpower,and it is not fair to that student who has enough going on in her body to deal with and could really use the support of friends.

Please Mr. and Mrs. Public, do not tell your friends about people getting diabetes because they are fat, lazy or because their parents didn’t care enough to stop them from eating junk. You may be sitting in a room with a parent whose child has diabetes.  That parent has struggled to make sure that their son or daughter has led a “normal” life while dealing with 3am low blood glucose levels that could kill their child.  That parent may have spent the past week worried about how their son would handle the pressures of graduation ceremonies and after parties while managing their diabetes care on their own.

John and Jane Public, I know that you cannot begin to understand what my life has been like for the past 15 years.  I know that you have no idea as to what my son deals with each day.  I don’t know what its like to deal with  a child with asthma or crohn’s disease but I would never blame the child or the parents for the disease.  I would listen and learn.  I would empathize and offer the little support that I could.

I don’t expect you to learn about diabetes.  I am not asking you to.  I will ignore most of your ignorant comments but if you let me, I will try to educate you a bit as well.  I know too much about diabetes.  I have spent the last 15 years immersed  in its world.  Don’t feel bad for me. I have met some amazing people and I have learned a lot.  My son doesn’t need your pity either. He is quite happy just leading his life but when you see his pump or watch him lance his finger remember…

Yes it hurts but it keeps him alive.

Yes, you could do it if you had to and hopefully you will never have to.

Yes, you should stay away from that junk food and exercise more.  It may or may not stop you from developing diabetes but either way, you will feel better.

Yes, he does have the bad kind of diabetes because there is no good kind.

Yes, its okay to be thankful that you don’t have to experience any of this….I really wish my family didn’t have to either but we do so please, think before you speak, and maybe, just maybe, take the time to learn about this disease that is impacting more and more families every day.

Sincerely;

A  tired mother of a young man with Type 1 diabetes.

Loving created by my dear friend Cheryl D

Loving created by my dear friend Cheryl D