Tag Archives: children with diabetes

Diabetes Diagnosis day…It slipped my mind

Celebrating 17 years of health and wellness
Celebrating 17 years of health and wellness

It slipped my mind…sort of…well, more so than ever before. Today is the day that Diabetes turns 17 years old in our house.  Strangely, it hasn’t consumed all of my thoughts this month.  I haven’t planned this post for weeks in advance…in fact I actually had another post planned for this week when I realized the date!

That is unheard of for me.

Every March I think of two things…what will I get my oldest son for his birthday and how long diabetes has been a part of my youngest son’s life.

This March has been a bit different.  I was busy this March with other things.  For the first few days of the month, I got to spend time with my nephews after not seeing them for a  few years.  I was able to meet my youngest nephew for the very first time.  We enjoyed cuddles and goofing around.  It wasn’t until I was home that I thought about his little life and the life of his older cousin–my youngest son.

When my son was his age, he was being stabbed with a needle somewhere in his body 5+ times per day.  At the age of 3, his little fingers had tiny marks from testing his blood glucose levels 8 or more times per day.  My sweet little nephew had bruises on his knees from playing outside with his trucks.  When my son was that age, he had similar bruises but there were also bruises that would sometimes find his arms, legs or stomach after an injection.

I am so glad that none of my nephews have had to go through this.  I remain in awe of how well my son has managed to cope.  He won’t even notice this day.  Life with diabetes is all that he has ever known.  For him, it is simply be St. Patrick’s Day–an excuse to go out with his friends and have a beer.

I will pause as I always do.  Most likely I will message a dear friend whose son shares this “dia-versary”.  On this day, I will  be extra grateful for the many incredible and lasting friendships that diabetes has brought into my life.  I will also take a moment to cry for the friend who lost her child last year–we were brought together because of our sons’ common diagnosis of type 1 diabetes.

Today I am sure that I will slip back in time for a moment.  There will be a pause in my day when I vividly recall the lifeless child that I held in my arms 17 years ago.  I will remember the prayers that I said and the prayers that were offered as we rushed to the hospital.  At one point today I will see, in my mind’s eye, the doctor who sent my son to ICU and told me, “if he makes it through the next 24 hours, you will need to learn a lot about diabetes.” The phone calls, the terror, the uncertainty will all come flooding back just like it was yesterday.

Today I will quietly cry for the life that was lost but I then I will wipe away the tears.  As I tell others, today is about celebrating.  Today marks 17 years that my son has lived strongly with type 1 diabetes.  He has never let it stop him from doing anything–except for shovelling the driveway in the winter.  He seemed to often be conveniently low as a child during that particular chore.

My son now manages his diabetes his way. I don’t test him.  Rarely do I know what his blood sugar levels look like.  I can’t tell you his insulin to carbohydrate ratio or even his basal rates. Diabetes is his disease to handle now.

It hasn’t all been perfect. There have been stumbles along the way.  I still remain there to help when asked.  We discuss carb counts or extended boluses.  I still do site changes when required. Seventeen years later, we are both finding our way  but he is healthy and thriving.  I can ask for nothing more…except a cure of course.

 

All Children with Diabetes are still not safe in school

school1It has been over 15 years since I was first asked to take part in discussions surrounding the issue of children with diabetes in schools.  I still speak publicly on the issue. I still assist parents but I honestly thought that after 15 years, more insulin pumps and other awareness activities that things would be vastly improved–that all children would be safe in school.

Things have changed.  Years ago, very few school had policies in place protecting our children with diabetes in schools.  Very few educators knew their roles and parents struggled as well.

Today there are provinces that  have stepped up to the plate offering guidelines and even legislation surrounding this issue.  Sadly there is still a long way to go.  There are still parents who do not feel safe sending their children to public schools.

I once looked to the US as a standard to achieve.  The rights of their children with diabetes are protected under the American Disabilities Act.  That had to count for something!  A lawyer friend of mine reminded me that this was a just a law.  Enforcing it could often be just as frustrating and overwhelming for families in the US as it was for families here in Canada.

The moral? Keep fighting. Keep educating, Continue helping and that is what I am doing.

Many years ago, just after a change in rulings on the Disability Tax Credit, I met a wonderful lady. She worked for what was then called the Canadian Diabetes Association.  She was there first formal advocacy employee.

Our sons were of similar age.  She listened to our struggles and empathized.  Over the years we have worked together on certain projects and simply managed to touch base now and then to see who the other’s family is faring.   The yesterday she sent me an email asking for help.

She too is still working on the national issue of safety for children with diabetes in schools.  There are still many families who are fearful of sending their child with diabetes to school.  There are other families that send their children to school but are constantly at odds with the system to achieve optimal care for their children.

This saddens me greatly.  If you are one of those families that are still having issues with your child with diabetes in school, please comment or message me (advocacy@diabetesadvocacy.com) with your email address. I will pass your information along to my friend and she will contact you. Hopefully together we will be able to highlight the problems and finally work towards a resolution to this issue for everyone.

 

 

I wish I could bring him back for you

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In the diabetes online community, the appearance of a blue candle suggests that someone has lost their life to diabetes.  Its a time of sorrow.  Its a time to hug our loved ones a little closer. Its a time to test a little more often and then we move on.

Last week I received a message that made my heart stop.

I headed over to a friend’s Facebook page.

I saw the blue candle.

I couldn’t breathe.

I read her post.

The tears began to flow.

Through the tears I sent a message to my friend.  She confirmed my worst fears with her words “I just want him back.”

“Oh, I wish I could bring him back for you!”

That’s what I replied through the tears.  I was numb.  The blue candle was no longer for a stranger who could have been my child.  This candle was for a child that I had watched grow through our online communications. This was happening to a friend who had been there for me through highs and lows of  16 years with diabetes.  I wished I could bring her son back to her.  The pain was too much for me, I couldn’t begin to imagine how she was feeling. It hurt too much to try.

No mother should bury their child. We shouldn’t have to mourn for those who have yet to have fully enjoyed their lives. There is something fundamentally wrong with that. It makes our hearts ache.

When we hear of a child lost, we hurt but we push it away. It happens to other people.  It is horrible but it happens to other people.  But what about when it doesn’t? What about when it hits your family?

Last week it hit my family and the pain is still fresh.

15 +years ago, I became connected to the internet.  I reached out to find “parents of children with diabetes”.  I found an information email list, or so I thought.  What I really found was a family.

I found people, some that I would meet, some that I would talk to on the phone, and some that I would never know beyond the keystrokes of a keyboard. All of them would become family.  They would be by my side through the good times and the bad.  They would understand diabetes –its peaks and valleys but they would also understand me.  They would be there for me at all hours from around the globe.  They were Friends for Life–they were family.

Over the years, some of those connections have been neglected.  Our children have grown.  Some of  the children have become parents themselves.  We watched each other’s lives on Facebook and occasionally wished each other well.

Other connections remain strong. We reach out regularly.  We still see each other. We have kept in contact and fondly look back on where we have been.

No matter whether we are close or drifted when tragedy strikes, we are all one big family again. One family united by pain.  One family sobbing with each other.  One family holding each other in virtual hugs with real tears.

Tragedy isn’t supposed to hit us. Not a direct hit. Not taking a child that we “knew” and watched grow but it has.  And it hurts like no other.

I know that the pain will fade for some of us.  It will dull a little for my friend but that missing piece will never be replaced.  I am lucky.  In 16 years, my son has stayed quite healthy.  In all of this time, I have only known of one person–whom I had met, spoken with, and been friends with, who had died because of diabetes. Now there are two.

I don’t want there to be any more.  We need a cure.  We need better access to treatments.  We need more awareness. We need more…

We will continue to work harder. We will bike more. We will walk more. We will advocate louder.

Our hope will remain.

We came together because of diabetes.  We stayed together because of an incredible friendship that knows no borders.  I pray that one day we will celebrate a life without diabetes.  Until then, hug your loved one a little closer today.  Send prayers and strength to the families who have lost someone during our fight. I am grateful to each of you who have become such an important part of my life.

 

 

Mothers Day Reflections

In North America, Mothers Day is this weekend.

I have seen that JDRF Canada is doing promotion this week on #Type1derWoman  This looks really fun and I can’t wait to see more.

A few years ago, the DRI did a segment on the Real Moms of Diabetes.  A few of my friends took part. It was equally as moving.

And of course there is the incredible poem written by my dear friend Linda Kaniasty that mothers in the UK put to video.  It still makes me cry.

All of these posts have me thinking about life as a D-momma.  My role has changed a lot over the past 16 years.

I started out as the mother of a toddler with diabetes.  I was lucky.  He didn’t mind the shots.  He was okay with finger pokes.  He hated to eat however.  That was a challenge.

If I had it to do all over again…and it was 2016 and not 2000, well I would be putting him on a pump right away.  There is no need to fuss with injections, a pump would give us the flexibility to let him eat the way  he wanted.  I would have a CGM so that when he fell asleep, I would know if he was just napping versus having a low and couldn’t tell me.

I would still use bribery.  Stickers and rewards were a fabulous way to get through everything from potty training to meal fights.  I would still allow him to inject and have control of the diabetes care for his toys.  This was a great way to give him power.  I would still worry and log like crazy but that is me.

Eventually my toddler grew and went to school.  The worry again was tangible.  I had friends who would be watching out for him in school but I was terrified.  There was so much that could go wrong.

If I had to do it again, I would have released the terror.  He was left in the care of teachers who truly cared about their students.  He had friends who cared about him.  They all would do their very best…or call me if in doubt.  I didn’t need to hover. I didn’t need to stress–as much.  It was okay.  Yes, there would be wrinkles along the way but they were small. He would survive.  We would all learn. It is important to relax a little during these years as greater challenges will come.

As my child became a preteen, the issues again changed. We struggled to find a balance between what he should be expected to do and what I should be expected to do.  I ached that he was expected to do so much.  I grew frustrated when one of us failed.  If I had to give myself advice for that time looking back it would be that it will be okay.  You will find your way.  If he didn’t die,  learn from it…both of you.  Work hard. He is listening in his own way.  It will be worth it.  He can stumble a bit.  Its okay to wipe his knees but he will get it.

When my son became a teen…well didn’t that change everything!  There were now hormones.  There was the teen brain.  There were struggles.  There were worries.  How do you balance allowing him to be a normal teen (with all of the worries that comes with that stage) and being a teen with diabetes? You ask for help.  You reach out to those who have been there…and you pray.

As a teen, my son decided that he knew it all.  He decided that he really didn’t need the care of Mom any more.  He moved away and decided to finish high school while living with his father. I foresaw many problems.  Some of them came to pass…some didn’t.  I felt like a failure. I was a parent whose child didn’t want to live with them.  People reminded me that it wasn’t about me, this was about him.  It still hurt.  My one clearly defined role now became more blurry than ever.

My son is now a young adult.  He is 18 and learning to live with the choices that he has made.  He has stumbled.  He has tripped a few times but he has done okay. He is getting stronger in more ways than one.  He understands his body he tells me.  He is tightening his control.  He has learned. He knows he can still come to me when he loses his way.

So what would I tell that Mom of a toddler now? You’ve got this.

What would I tell that mom who is watching her son head off to school? The school and his peers have your back.

What would I tell that mom of a teen? He really did listen and learn when you were sure he wasn’t.  Somehow you will both live to go through another stage of parenthood.  Some days will hurt but most days will be a blessing because when you look back at where you have been, where things could have gone? Life is amazing!

There are still challenges.  We still have a long road ahead of us.  No matter how old my children are, I am still their mother.  They are still my children. I worry. I care. I love them deeper than I could have ever imagined.  They make me shake my head at times but they also make me proud.

For all of you fellow D-mommas, take a moment and be proud.  Be proud of YOU and all that you have accomplished when faced with this huge burden.  YOU are amazing!

liam barb sept 1999b

 

 

He’s Got This

Over Easter, my youngest son came to visit.  Each time he visits me I am shocked by how much he has grown. My little boy is long gone and a young man is emerging. A child with diabetes is being replaced by a young person with diabetes and I stand in awe.

This time I stood back a bit more. I tried not to fall into old habits of taking over care or nagging about testing. I gently reminded. I compared carb counts now and again when asked.  I tested him at night at his request but mostly I sat and watched.

I wondered how his care was going. He hasn’t told me an A1c in years. I worried about his rates. I worried about his health.  The more I tested, the more I watched, the more my pride grew.

He wasn’t perfect.  He still doesn’t test as much as I would like but when he did test, his results were awesome. When he ate junk, which he doesn’t do as much any more, he nailed the bolus.  When he spiked because of a low cartridge and air being delivered instead of insulin, the spike was no longer in the 20s (360+) it hovered in the low teens.

I sat back and realized that he’s got this.  All of those years of preaching, teaching and sharing have paid off.  He is taking care of himself.  He is trying to protect his body from itself and doing a good job.

In a recent conversation I reminded him that he is the expert in his care.  It is his job to ensure that he is able to demonstrate that to medical professionals that he sees.  He should listen to them and be willing to accept their help but he may also have to remind them that he has been doing this all of his life.  He has been privileged to be trained by some of the very best people in diabetes care in the world.  He has a very good handle on things and a huge support network to reach out to when he is in doubt.

He explained that he finds that very frustrating.  He doesn’t want to get into a contest of who knows more when he sees someone but he feels that after all of these years he does know his body.  He is very healthy.  He has got this…and he has!

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You always get the neatest things!

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I recently received my “Peace Love Insulin”  window clings.  I was so excited to receive them that I actually opened them in the car on my way home.  As I sat there, I wondered if I could put them on my car window right then.  The instructions said that I need a clean window, so I figured that I should wait until I was home and had a chance to make sure the surface was perfect.

When I got home, I immediately took a picture of my clings and shared them on Facebook and Instagram.  I wanted my friends who had created and mailed them to me to know that I had received them…Okay they were actually just too cute not to share!

After posting the image, another friend quickly commented, “you always get the neatest things!”  I realized that it is so true! I am blessed to have met so many incredible people on this journey with diabetes.  I have made connections all over the world. These fabulous people have shared things with us over the years and brightened my day with the smallest of gestures. That remains the most special part of this crazy life.

I have shared away of the diabetes shoelaces but if you would like to get “Peace Love Insulin” window clings, I can still set you up!!

Contact my incredibly talented friends over at the Diabetes Scholars Foundation. They have an Etsy page set up to take your order and send you out your very own clings.  You can stick them on your car, on your computer, wherever your heart desires!  Your money will go towards the incredible work done by the Diabetes Scholars and you will be the coolest person in town!

#PeaceLoveInsulin
#PeaceLoveInsulin

 

You really do make Friends For Life

barb and jo 2015

This past weekend I had the honor of being able to take part in the Children with Diabetes Friends for Life Canada Conference.  Being asked to speak to attendees truly is an honor that I never take for granted.

For me, Children with Diabetes (CWD) has been a lifesaver and I don’t mean that lightly.  In 2000, my youngest son was diagnosed with Type 1 diabetes at the age of just two years.  I was terrified.  I knew no one else with a child with this disease.  Our clinic gave me the phone number of one other parent.  She was just as new at this as me and lived an hour away.  I had no immediate family nearby.  I had amazing friends and kind in-laws but I still felt alone.

When my son was diagnosed we didn’t have internet. That sounds strange today when we have Wi-fi in our cars but in March of 2000 this wasn’t the case.  Our computer was used to type up documents and for my older son to play games.  By the fall of 2000,  my mother had convinced me to try this new thing…dial up internet.  At that moment, my world expanded.

I had been fighting trying to get a 2-year-old to eat after he had had his insulin.  The results were exceptionally stressful for everyone involved.  There were a lot of tears.  A search for “parents of children with diabetes” lead me to an email support list.  I joined and posted my first question…”how do I get my son to eat breakfast after I have given him his humalog?”  The answer was instant.  Two women replied…”Don’t inject him until after he eats then only give him insulin for what he ate not what you wanted him to eat.”

The answer was simple.  It had been suggested to me by my clinic but when it came from these two  women it finally clicked.  Fifteen years later, I am still friends with one of the ladies that replied.  We have met in person and I have been able to thank her for changing my world.

From that moment forward, I became a part of a community.  We cheered each other on and debate certain issues. We shared new technologies and tips that helped to make our lives easier.  Everyone involved had lived the same life at some point.  We shared hopes, dreams, and frustrations. It was (and is) the most amazing group of people whom I ever had the pleasure of interacting with.

Over the years, I have stayed in contact with many of them.  We have reached out to each other in private emails, text messages, phone calls, and in person visits.  When you  attend a Friends for Life event it  truly is a large family reunion.  It is time spent with amazing people who have been in my life for over 15 years and have made a profound difference to it.  They have motivated me and encouraged me.  When we get together, it is as if we have never been a part.

Going to a Friends for Life event is a chance to reconnect with old friends and make new ones.  There are so many names that I recognize at registration that I get to put a hug to when we meet.

It truly is a gift to be a part of such an event.  I treasure every minute and hope that everyone gets the same chance at one point…to find amazing friends and incredible supports to help you through this journey of life with diabetes.

 

Its the most wonderful time of the year!

I am trying to be calm, but I am so terribly excited.  I have gone over my presentation for one last time.  I am thinking about starting my laundry and finding a suitcase.  Inside, I feel like a child getting ready to head to Disneyland tomorrow.  Most people would think I am crazy.

I will be spending most of my weekend inside a hotel.  I won’t be sharing that time with my partner.  We won’t be enjoying a private, romantic getaway.  Why would I be so excited?

Because this weekend is special.  This weekend has taken two years to plan and  arrange.  This weekend I get to spend time with some of my absolute favorite people on the planet.

I will be with  friends who have been there through thick and thin.  They have encouraged me and given me the kick that I have needed through the highs and lows of life over the past 15 years. They are my diabetes family.

I truly consider it an honour to be able to be a part of the Children with Diabetes Friends for Life Canada conferences.  I know how important these conferences are for families so it pained me a few years ago when I found out that there would be no more conferences in the immediate future.  With the work of many incredible people, we were able to change that.

This weekend, CWD will return to Canada after a brief hiatus.  Families have been talking about it since the end of the last conference.  I am so excited for them.

Many people don’t understand why I get excited about this conference.  They figure it’s just the time away or something like that.  They are wrong.  This is a time, an event, at which I can give back.  I can share what I have learned over the years with families and in return I get smiles, hugs and new friendships.

To sit in a hotel filled with people who have experienced what you have been through is a huge gift.  Each time that I am able to share in that experience, I consider myself to be the luckiest person on the planet.  It brings a song to my heart and a smile to my face to know that I get to be a part of something so incredible!  Have to get some laundry done and get packing!!FFL-Canada-2015-450

 

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

He’s Got This

calling momIts 7am. My phone rings.

“Mom, what is the pump log?”

“It is probably a sheet for you to put all of your pump information as well as everything you ate and bolused for the past 5 days.”

“But I put that on the other sheet.”

“They send out two sheets. One is for those on injections to fill out and one is for pumpers.  It doesn’t matter which sheet you used as long as you provide them with all of the information that they need.”

“Okay.”

I hung up and began my day.  My son was heading off to what could be his last appointment at his diabetes clinic.  He will be 18 at his next appointment and will most likely be transitioning to adult care. Oddly, this was not the first appointment that he has gone to without me but he seemed to want to get this one right. I was impressed.

At 10am I got my second call…”Mom, can you go into the pump manual and figure out where I find my Insulin Sensitivity?”

I dug around in the closet, pulled out the pump box, found the manual and began searching through pages.  I gave him the instructions and took a guess at the answer.  I was wrong.  I guess I am a bit more out of the loop than I thought.

I wished him luck and he continued on with his appointments.

Later that day I asked him how things went.  He told me that he is done with the clinic. They will refer him to something a bit closer to home for all subsequent appointments. I asked if he had been referred to a new doctor. He said no, his doctor was keeping him on for another year.

He was looking forward to a new doctor so I asked him how this appointment went. He said it was great! It was short (could that be because he actually was prepared, looked like he knew what he was doing and they didn’t have to pry answers out of him??).  They were both happy.  There were no A1c results because he only went to get his blood work done the day before his appointment but he would live for another six months so all was good.

The day was an interesting experience for me as the mother of a child with Type 1 diabetes.  My son was/is independent in his daily care and now in his medical care as well.  Despite that, he knows that he always has a someone who will help him whenever he calls.  I no longer hover with advice or suggestions (well not a lot) but he knows that if he presses my number, I will help no matter what.  That is a very good feeling.