Tag Archives: diabetes

Why November 14th is Special

Banting birthdayNovember 14th is  World Diabetes Day.  Those who live with diabetes often remark that every day is diabetes day! That is true but November 14th is special.

The 14th is the day that Frederick Banting was born. For those who don’t know, Banting was a Canadian born medical scientist.  He received the Nobel prize for his work isolating insulin for therapeutic use with his colleague Dr. Charles Best.  He is the reason that my son is alive and thriving today.

Before 1922, a person with Type 1 diabetes was not expected to live long. The only way for them to survive was on very strict diets and those diets often left them malnourished.  Injected insulin came along and changed that.

The incredible before and after image of Leonard Thompson shows us just how dramatic of an impact insulin had on the lives of those living with diabetes.

From https://www.trumanlibrary.org/histday/insulin/impact.html

While my own son wasn’t as emaciated as poor young Leonard, he was gaunt and skeletal before he was diagnosed.  He had been a thin child.  He had been sick but seeing him teetering in the bathroom after he began to receive insulin sent me into shock.  His skin was hanging off of his tiny body.  It had happened so quickly.

Thankfully on November 14, 1891 a man was born who would find this miracle elixir.  He would discover a way for my child, and millions like him, to receive the insulin that they were lacking in their own bodies. Dr. Banting gave them their lives back.  He gave parents back their children.

Those of us who use insulin, no that it is not a magic pill. We understand that it must be respected.  People living with diabetes quickly learn how the smallest doses of insulin can have life-threatening consequences. Despite the risk, the reward is incredible.  We have our children, our partners, and our friends.  They thrive, contribute and enrich our lives.

On this day we say “Happy Birthday Dr. Banting!! Thank you so very, very much for giving us this incredible gift of life.”

 

The DTC…We have come a long way. We will win the war!

we will win dtc warThe past few weeks have been incredibly busy and I have never been more proud! I have been battling the Federal government over the Disability Tax Credit since the early 2000s.  There have been victories and most recently there have been setbacks but we have come a long way!!

Let me give you a bit of history.

Back in 2002 or so, a lady named Shelley Tyler took the Canada Revenue Agency to court and won.  She believed that her son was eligible for the Disability Tax Credit because they took an inordinate amount of time to feed him and keep him alive.  Her son had type 1 diabetes.

Mrs. Tyler was kind and shared her experience with others.  I used some of her work in preparing my own application.  Others did as well.

More and more families were applying for the Disability Tax Credit.  They were still being turned down, but even more where refusing to take no for an answer.  They were taking their cases to Tax Court–and winning!

Families like the Chafes were winning the argument that insulin therapy was administered 24 hours a day when using an insulin pump.  This led to a year of qualification for all pumpers.

(The irony of recent comments that the increased use of insulin pump therapy is why applications have been denied is not lost on me. )

Changes were happening.  The diabetes community was roaring.  We were a grassroots group.  The Canadian Diabetes Association was only in the infancy of creating a dedicated Advocacy Office and JDRF was focused on funding research. That was okay because the diabetes community was powerful in its own right.

Together we rallied. We worked on court cases.  Friends and family members contacted their MPs and demanded fairness. The diabetes community was represented at the Federal review of DTC fairness.

The result was legislative change.  Children with diabetes were now given the tax credit based on a certified diagnosis of type 1 diabetes.  Adults were also allowed the credit but their means test was a bit more strict.

Recently there seems to have been a change in how disability tax credit applications are handled for people with diabetes.  We have discussed it before.  One thing hasn’t changed however and that is the power of the diabetes community.

Thanks in part to the power of social media,  the community voice is louder than ever and I couldn’t be more proud!

Diabetes Canada is sending well-spoken, knowledgeable individuals to meet with CRA and voice our concerns.  JDRF has been delving into the issue for months as well.  Together they are creating a powerful voice.  Behind the scenes, there are many more grassroots groups working together.  Everyone is pushing the same  message.  “Diabetes is a 24/7 job.  People living with insulin dependent diabetes take more than 14 hours per week to perform life-sustaining therapy.”

The message is getting out there.  This issue was all over the media.  My Twitter feed has been blown up with articles and Tweets.  I am proud! The diabetes community is coming together.

Some members have voiced their frustration. This should have been finished years ago.  People living with diabetes have enough to deal with.  Fighting their government for a credit that they obviously qualify should not be another stressor. They are right of course.  I totally understand their get their pain.

I have been in this battle since the beginning.  It’s been a long one but please don’t lose hope! This is not a war that is lost.  It is a battle that will see victory.

The diabetes community is a powerful voice.  Canadians with diabetes are coming together in record numbers.  We are using that voice to let CRA and the Minister of Finance know that we are not prepared to back down.

Now is the time to keep the momentum going.  Write your letters to your MPs. Answer the call when one of the diabetes organizations calls looking for your story.  Our voice is strong.  We have come a long way and together we will finally win the war.

Six things not to say to parents of children with diabetes

things you dont say to a parent of a child with diabetesPeople generally mean well but sadly many just don’t think before they open their mouths.  I therefore thought that it might be a good idea to create a little list for them of thing that you really should NOT ever NEVER say to parents of children with diabetes. Consider it a personal service announcement if you will…

My cat had diabetes

Really? Seriously? Because we know that you injecting your cat’s fur with insulin is really identical to chasing a toddler around the room with a syringe,  pinning them down and explaining that you are stabbing them for the fourth time today because you love them.  Yes, I am sure they are exactly the same.

Yes, there was an eye roll here.

My great-aunt Thelma died of diabetes

Thank you.  I needed to hear that.  I have guilt on top of guilt about not protecting my child from this disease and you tell me that your 90 year old aunt died because of diabetes?

Odds are that she had Type 2 diabetes and at 90…well her odds weren’t the greatest for lasting long anyway but yeah, I can see where I needed to know this.

This is why parents of children with diabetes have bruises on their heads. They spend a lot of time banging it against a wall in frustration. .

Don’t worry. I am sure that your child will grow out of it.

The odds of my child outgrowing their diabetes are lot  less likely than as you overcoming your ignorance of what type 1 diabetes really is.

Nope, growing out of diabetes is not an option.  My child’s pancreas is just no longer doing its job.  We have tried everything we could to revive it but its dead. Gone. No functioning beta cells to produce insulin.  No hope.

On the upside, I would really encourage you to do a bit of Googling or even ask some questions of me and then listen.  Truly listen to what I will tell you and you might be surprised at what you can learn. Your ignorance can be cured!

Perhaps if you hadn’t given your child so much sugar, then he/she wouldn’t have gotten diabetes.

Perhaps if you had not thought that they said “trains” when they were handing out “brains” and decided that you didn’t want to go for a ride, you would have a bit more of a clue.

Having a child with diabetes brings enough guilt.  I fret over what I could have done. I berate my faulty gene pool for allowing this to happen to my baby. Despite these things, I did not cause my child to develop diabetes. What my child ate had nothing to do with his diagnosis.  Really.

Would she prefer a diabetic chocolate?

Eeeekkkk!! Run! Fast! Actually if you eat many of those chocolates you will have to run fast–to the washroom.  Many diabetic candies are filled with sugar alcohols that can cause diarrhea.

Thankfully, my child is able to balance insulin injections with food intake so regular candy is just fine.  We do appreciate you trying though.

Perhaps you may want to relook at how many of those candies you have as well.  I kid you not.  They are nasty!

Is their diabetes under control?

Control? What is that???  A parent of a child with type 1 diabetes is trying to keep a blood sugar fluctuation of .54grams per liter on a constant basis despite over 25 influencing factors trying to mess with things.   Imagine that…trying to maintain a balance of less than one gram of sugar with the influence of stress, food, exercise and 20+ other things!  Can you see why  as parents we simply celebrate when they get even two readings in range?

It’s a big deal.  Diabetes is a really complicated disease.  Most parents of children with diabetes are doing their very best to balance allowing their child to be a normal kid and trying desperately to manage blood sugar levels so that their children feel healthy.  It is a huge challenge.

Parents of children with diabetes appreciate when you care.  Really we do, but please, please, please, think before you speak!

There are certain things that you really truly should not say to parents of children with diabetes.  Offer them a smile, a sympathetic ear, a kind word even.  Honestly, they are much more appreciated.

How to Fight for the Disability Tax Credit with Type 1 Diabetes

How to fight for the DTC with T1DDiabetes Canada recently released a statement claiming that the Canadian Revenue Agency (CRA) is now declining 80% of applications for the Disability Tax Credit (DTC) submitted by people living with type 1 diabetes.  I cannot confirm or deny these figures. I can state that I am seeing a significant increase in the number of people contacting. They are reaching out because they  or  their clients have been declined for the DTC.

What is going on with the DTC?

No one seems to know.  CRA claims that there has been no change in policy.  Public concern seems to suggest otherwise.

For years, people with diabetes have often received a follow-up letter when they have made their application asking for more details from their doctor.  In the past, that letter was filled out in a similar manner to the initial application and the claim was approved.  This seems to be happening with less frequency now.

People living with diabetes are often receiving a letter stating that “an adult who independently manages insulin therapy on a regular basis generally does not meet the 14 hours per week requirement unless there are exceptional circumstances.”.  In some cases this is followed by a request for more information but in other cases it is part of the denial for their claim.

Does this mean that I should not apply?

No.  People living with diabetes usually spend over 14 hours per week to intensively manage their diabetes.  Granted this does not include all people living with diabetes but does include a large majority.

You should continue to send in your detailed applications. Make sure that you are adding tasks that are approved and that your total is over 14 hours.

What happens after I apply for the DTC?

Once you and your doctor have completed your forms and returned your application, there will be some time before you hear back from CRA.

Odds are high that your doctor will be contacted and asked for more information.  Again, make sure that the follow up letter is detailed. Take care to  clearly show that you spend over 14 hours per week on your diabetes care.

What if I am rejected?

If you are turned down for the Disability Tax Credit, you have a few options.

First you can ask that your file be reassessed by another officer.  Sometimes fresh eyes will give a fresh perspective and the ruling can be changed.

Second, you can formally appeal their decision within the first 90 days of your rejection letter.  This is a detailed process but does not necessarily require a lawyer.  If you choose to go this route (and I would encourage everyone to do so), be sure to keep careful and detailed records. You must also contact CRA for a copy of your file under the Access to Information Act to better understand what you are fighting against.

Write your Member of Parliament

Finally, at any stage of the process, I would encourage you to ask for the assistance of your MP.  Whether you are thinking of applying, have applied or have been rejected, it is important for Members of Parliament to be aware of this situation.  Diabetes Canada has written a great template for people to send to their MP.  Download the letter. Be sure to personalize it to your situation and forward it on.  Remember that letters sent to a Member of Parliament in Ottawa do not require postage.

The more MPs that contact the Finance Department and ask them what is going on, the stronger the case for change and fairness.

Together we were able to get access to this credit for some people living with diabetes over 10 years ago.  Working together again, we will create change for even more individuals!

Animas, We are Heartbroken

Animas insulin pumpers heartbrokenJohnson and Johnson announced on September 5th of 2017  that they were closing the doors on their insulin pump division in Canada and the US.  Animas Insulin Pumps would be no more. Animas insulin pumpers in North America were heartbroken.

While some saw it coming in the corporate rumour mill, others were blindsided.

Animas had done something that many companies in many industries are striving to do…they had  created a feeling that you were family.  Whether you were an Animas insulin pumper or you used another brand, you had probably attended an Animas event and were treated royally.

The employees with Animas all seemed to genuinely care about you.  They checked in on you and took the time to know your family.  I had the pleasure to work closely with many members of the Animas family over the years.  They will be huge assets for the next company that employs them. I am sure that many of them are just as saddened as we are.

This is not the first time that an insulin pump company has closed its doors.  We have been here before…twice.

Cozmo (personally a pump like no other) closed its doors in 2009.  We still have two in my son’s closet.  I have friends who still wear this as their pump of choice.  It is doable even 8 years later.

Most recently, Asante, a pump revered by many who tried it,  was also forced to step away from the insulin pump market.  Their users were devastated.  They were heartbroken and felt lost–just like Animas insulin pumpers are feeling today.

How did they go forward?

One step at a time.  The great thing about insulin pumps is that, while some have quirks, many are pretty sturdy and last.  If you have more than one pump in your house–usually because one was out of warranty and you  purchased a new one right away “just in case”, relax.  If for some reason, you current pump stops functioning, go back on your old one while you decide which pump to try next! Just make sure to write down those settings and keep them in a safe place.

What do I do now?

You don’t have  to stockpile supplies   You don’t have to run out and buy a new insulin pump tomorrow.  The Animas press release stated that warranties will continue to be honoured until September 2019. Cartridges will be be available until that date as well.

Statements from both Animas and Medtronic note that supplies will still be able to be ordered in the same way as before. Nothing changes, except when your Animas pump stops working, you will not be able to purchase a new one.

Thank you…

So while we take a breath and rethink our next steps…our next pump…our next option, I want to take a moment and say thank you.  Thank you to the men and women who worked so hard to make Animas a different company.  I truly appreciated getting to know so many of you.  You brought us a new experience in caring.  I hope that we meet again soon, with a new company perhaps bringing new options in diabetes care.

Options are the most important thing.  Make sure to always know your options and always choose the option that works best for you and your lifestyle.

 

9/11 and Diabetes Created New Concerns

Remember 9/11This post was originally written in 2012.  The sentiments remain the same. 9/11 was horrible.  When you live with diabetes, 9/11 brought out fears and concerns that you would never previously have considered…

September 11, 2001.  Is there any adult in North America who does not remember where they were on that fateful morning?

I  had left my house early to drive to the airport 2.5 hours away to pick up my grandmother who was coming to visit from the other side of the country.  My oldest son was in school and my youngest was with me for the ride.

I stopped to do a bit of shopping and was looking at paper towels when my cell phone rang. I was told  “A plane has hit one of the towers in New York. There has been a terrorist attack.”   It made no sense to me and I didn’t believe it.  There had to be a mistake so I continued my shopping  before the next leg of my trip.

A few minutes later my phone rang a second time.  This time it was a woman from Air Canada who said,  “We have your grandmother here.  The plane can’t fly her  because all air traffic has been grounded.  We will be putting her on a boat and you can meet her tomorrow morning.”

What? The terrorist attack was real? Planes grounded?  I was shocked to the core as  I spoke to my grandmother who was in great spirits and excited to experience an Atlantic Ocean ferry boat crossing.  We  headed home and like many others, I alternated between being glued to the tv and checking my computer for updates from friends and family.

I had recently found an online support group  for parents of children with diabetes. The people there had not only become my lifeline, but also my family.  We were frantic to hear from people that we “knew” living and working near the towers in New York.

I had a cousin who was an NYC police officer. I had to find out if he was working that day or safe with his family on Long Island. Another cousin was due to go to traffic court that day in one of the Towers and I wondered if he went before the collapse? It was a day of chaos, fear and some relief.

By the end of the day, everyone was accounted for.  There were a lot of prayers for those lost as well as those who made it out alive.  As the dust settled–figuratively and literally, a new fear began to permeate.  I live on an island in the middle of the Atlantic Ocean and can easily be cut off from the rest of the world–the rest of my family.

More importantly, if we were cut off how would I get insulin or diabetes supplies? My youngest son relies on insulin to live.  What if we couldn’t get it as easily any more? How would I keep him alive?  What if the terrorist attacks continued? Would they target pharmaceutical factories? Could I feed him no or low carb foods? Would he be okay? I could feel the panic welling.

I wasn’t alone in my concerns.   Other friends with children with diabetes were thinking similar thoughts but some were  much more resourceful than me.  One friend investigated getting insulin from rabbits to use for her child.

Thankfully we never had to be concerned with any of those fears coming to pass.   My grandmother is now passed on.  Each year, we all continue to  remember exactly where we  were on that day and we say an extra prayer.

For those of us living with diabetes, we give an extra pause.  We remain grateful for access to the supplies that keep our loved ones alive.  It is oddly funny however that once diabetes enters your life, it permeates everything–even memories of disasters.

Tips for Managing Diabetes in the Summer

diabetes family summer partyIts summer!! I mean it really is finally summer! Some areas have been enjoying great weather for a bit but where I live–well, I kind of wondered if summer was ever going to show up.   Now that it is really here, let’s talk about a few tips for managing diabetes in the summer months.

Keep your insulin and test strips cool.

Summer heat can literally ruin blood glucose test strips and insulin.  If you are on injections, make sure to keep your insulin stored in a cool place. If you are pumping, again, make sure that your pump doesn’t get overheated.  You may even want to consider changing out your cartridges more often to ensure that your insulin is fresh and hasn’t been compromised by the heat.

Test strips also react to extreme temperatures.  Again also make sure that they are stored in a cool place.  If you are traveling to the beach or theme parks, you may want to invest in a FRIO Insulin Cooling Pump Wallet.  They are convenient little cooling packs that will help to keep things chilled.

If you don’t have access to Frio packs, another great suggestion is to use frozen juice packs.  You can keep your supplies cool and are prepared for lows!

Mastistol and Antiperspirant are pumpers’ new best friends.

Summer often means swimming and swimming can mean chlorine. Chlorine can bring extra headaches for people with diabetes using an insulin pump in the summer. Personally,  the only way for us  to keep sites on in chlorine was by making sure that a product  like Fernandale Mastisol Liquid Adhesive was used on the skin prior to set insertion.

For people using an insulin pump and/or a CGM, you may also want to look at using an antiperspirant on the site.  Apply a light coat of antiperspirant (not deodorant) to the insertion site area.  This will help to keep sites in place when your body begins to sweat!

Have snacks everywhere.

Summer heat can bring its own challenges for managing diabetes. It tends to mean more exertion and rapidly dropping blood glucose levels.  Make sure to carry extra snack foods with you wherever you go.  One parent suggests that you stock up on Freezies.  They are perfect treats for lows and also help ward off dehydration.  Other families have suggested fruit and frozen grapes as must have snacks for on the go.

Drink lots of water.

Dehydration is a real problem in the heat.  It is especially important for people living with diabetes to stay hydrated because dehydration will cause blood glucose levels to spike.

Test often.

Heat, exhaustion and the fun of the sun can really mess with blood glucose levels so make sure that you test often to avoid any serious diabetes related emergencies.

Bring extras!

As I have said, infusion sets can fall out.  Blood sugar levels can go crazy.  It is vital that you carry extras of everything–extra snacks, extra water, extra test strips, extra insulin and extra infusion sets just in case.

Wear sunscreen.

I know, everyone is supposed to wear sunscreen so really is this a diabetes issue? Well no…and yes! It turns out that sunburns have been known to really mess with blood glucose levels.  The moral of the story? Stay hydrated and wear sunscreen to help keep blood glucose levels in check.

Have fun!

Finally, in Canada especially, we just don’t seem to see summer for long enough so plan ahead and enjoy all that this summer has to offer you and your family!

*please note that affiliate links have been used in this post.  While these links do not direct to the only places to purchase the highlight products, purchasing from the links does support the work of Diabetes Advocacy

I don’t have diabetes but diabetes can still bring me down.

Diabetes is exhausting.  The emotional toll of test, calculate, bolus is incredible. I am lucky.  I don’t have diabetes, but diabetes can still bring me down.  Because I don’t have diabetes, when it does tend to be too much I can step away,  put it on the back burner and regroup before I dive  in again. I wish everyone with diabetes had it that easy.

For years I was my son’s external pancreas.  It was exhausting.  I never slept more than four hours at a time.  If I woke up during the night, I tested his blood glucose levels.  We had no CGMs.  We just had me. It was my job to make sure that he was in range.  I was the one to calculate carbs, adjust insulin ratios and log blood glucose readings.

My son tested and learned alongside of me but I carried the bulk of the burden…until he turned 16.  At 16, he decided that he could handle it all.  He carried the entire burden for the next three years unless he was visiting me.  When he was with me, I took over as much as he wanted.

Taking over wasn’t the same as doing it 24/7.  That being said, being an external pancreas also wasn’t the same as being the one to experience the highs, lows and pokes with needles multiple times per day.  Not being able to “fix it” or take it away could (can) bring me down as much as the pressure of daily diabetes care.

I  still wish that I could take the pain away. I wish that my son would know a different life.  There isn’t a day that I don’t ache for the families and other people living with diabetes knowing that they can never stop testing or injecting.  Their very lives depended on it.

As I  brush away those feelings, a new sadness often creeps in and diabetes can bring me down again.  The new sadness often comes from   my advocacy efforts.

Ever since my son’s diagnosis, I have worked very hard in various advocacy arenas.  I have worked with grassroots groups, individuals and large organizations to see changes for children and adults living with type 1 diabetes.  This means that I also am exposed to the worst in the diabetes world.  People come to me when they are struggling and don’t know where else to turn.

Don’t get me wrong, I love being that shoulder. I love being able to give back to them in the same way that others were there for me.  The problem for me arises when we can’t see a perfect resolution.  I ache when someone comes to me with a situation that I know there is just no current solution for. I want to fix it desperately but when I can’t?  Diabetes can bring me down.

At some points that sadness because I can’t fix it has been overwhelming.  Those are the times that I have had to step back a bit. I have had to reduce the time I spent on issues and allow myself to step back from the advocacy arena.  During these times, I remind myself that there are many others out there who can handle it just as well and I regroup.

I will admit, sometimes diabetes has brought me down so far that I wondered if I would come back.  Had my advocacy usefulness past? Was I too cynical? I can’t really answer that but I can say that I recharge and am pulled back into the ring by families and individuals who continue to reach out looking to me for help.

I don’t have diabetes.  Diabetes can still bring me down but it never keeps me down.  Each day I wake ready to work a little harder.  Each day I will share what has worked for us and hope to inspire and assist others living with diabetes.  I will continue to work with individuals and groups to create better care for people with diabetes regardless of education or income level.  Diabetes can bring me down but it will not win. My battle won’t end until a cure is found.

Diabetes is not a joke. Diabetes kills.

candleDiabetes is not a joke. Diabetes is not about weight or junk food.  This disease requires those living with it to walk a fine line…too much or too little insulin can have catastrophic ramifications. The fear is real and justified.  Diabetes kills. 

The article below was originally published on May 11, 2016.  It was exceptionally hard to write.  As a parent of a child with diabetes, we know that diabetes is deadly but we hope it will never kill one of our own.  When it does….well your world is shaken to the core and is never the same again. 

I think of this family daily.  I can only begin to imagine their pain and the pain of others who have also lost their loved ones to this disease.  We will never forget. We will continue to work towards a cure. 

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 and a time during which we hug our loved ones a little closer. It is also a  time to test a little more often before we allow the memory to fade and we move on.

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

I headed over to a friend’s Facebook page to verify what I had read.

blue-candleThere was  the blue candle.

My breathing stopped.

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 and  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”.  Instead I found an information email list, or so I thought but 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.  This incredible online community 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 and some of  our children have become parents themselves.  We have watched each other’s lives on Facebook and occasionally we wish each other well.

Other connections remain strong. We reach out regularly.  We have remained 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–sobbing with each other.  A family holding each other in virtual hugs through real tears.

Tragedy isn’t supposed to hit us. Not a direct hit  like this one.  Diabetes in to supposed to take a child that we “knew” and watched grow but it has.  The pain is unbearable.

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 but now there are two. Those are two too many.

I don’t want there to be any more.  There must be a cure.  People with diabetes deserve better access to treatments.  We need more awareness. We need more…

Those of us in the diabetes community  will continue to work harder. Some people will bike more while others will walk more. We will all advocate louder.

Our hope will remain.

We came together because of diabetes but we have stayed together because of  incredible friendships 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.

What Parents of Children with Diabetes Wish You knew…

d parentsHave you read the blog post “What Everyone with Diabetes wishes you knew“? Go and read it if you haven’t. Bring tissues.  After I wiped away the tears, I began to think about “what parents of children with diabetes wish you knew.”  Some of us don’t have diabetes ourselves but we still have very strong feelings about the issue.  As parents of people with diabetes, we have things that we wish  our children knew.  There are also things that we wish that the general public knew.

Parents of children with diabetes wish that the our children with diabetes knew that….

We would take this disease from them in a heartbeat…a heartbeat.

With every tear that they shed,  we have privately cried  a hundred more… We didn’t want you to see how much it hurts us to hurt you.  We told you that we do this to keep you healthy and alive (and we do) but it kills us too.

No matter how old you are, we still want to “make it better”. Seriously.  Still.

We know that you can handle it.  We just wish that you didn’t have to…As parents of children with diabetes, when we were completely responsible for your care, we got tired and wanted a break. We understand that you, as the person with diabetes must feel the same way at times. We wish we could carry the burden for you.

Even when we don’t ask you how your readings are, we are still wondering if they are okay…We know that you are more than a number.  As parents of children with diabetes, we understand that blood glucose levels are only part of the story but we want you to be okay.  We want to know that the readings are okay as well.

We have watched you sleep and cried at all of the holes that we have put into your body just to keep you alive.

Every night that we sat awake waiting for your blood glucose to rise or fall, we did from love and a need to keep you safe.

When we nag at your for not testing, injecting or rotating sites it’s because we want you to have a long and healthy life.  It’s not that we love the sound of our own voices. It’s not that we think you don’t have a clue. As parents, we know  that life happens and people forget. We just want to help.

If you need us to, we will still help you with any care or night testing.  Ask.  We might be out of practice but we are quick studies. We will help you any way and any time that we can. It’s just what parents do.

Even if you aren’t my child and you live with diabetes, I wish I could take it from you.  Honestly,  I wish I could help you carry that burden for a week and let you breathe.  I have told you this before and I mean it. I don’t care how old you are.  You are someone’s child with diabetes.  You carry the same burden as my own child.  It still kills me.

I wish you didn’t have to carry so much “gear” with you when you go out.  I wish you knew the luxury of just grabbing your wallet and keys and heading out the door without concern for insulin, pump, glucometer and glucose tablets.

We wish for a cure too. Until it arrives, we will work with you to have the best care, the best knowledge and the best tools that we can afford.

As parents of people with diabetes, we wish that the general public really understood that…

Type 1  is not the same as type 2 diabetes.  Each disease has its own challenges and issues.

We did not cause our children to develop diabetes.  Seriously, we carry enough guilt about not protecting our children from an invisible disease.  Your added blame is not required.

It is okay for our children to have treats now and again, the same as your children do. No child–or adult should live on junk food but a cupcake now and again will just brighten someone’s day…or raise a falling blood glucose level.

Insulin is not a cure. It just keeps my son alive…and can kill him. It is a carefully managed tool that he use must use at all times.

An insulin pump is not a cure either.  A pump is an expensive tool that not everyone can afford.  Even for those lucky enough to be able to use one, there is still much work to be done to be safe and healthy.

Diabetes is expensive. Let me repeat this….diabetes is EXPENSIVE. There are many great advances in diabetes care but they are only available to those with excellent insurance or deep pockets.  The cost of diabetes supplies can range from the equivalent of a car payment or  mortgage payment each month. Again, that is just for a person with diabetes to stay alive.

I look tired because I don’t sleep at night.  After years of worrying about my son’s blood glucose levels and testing him numerous times per night–well I still wake up. I still worry about what his readings are. I still don’t sleep properly

Worrying isn’t about being an overprotective helicopter parent or because I have nothing better to do with my time.  I worry because diabetes is deadly.  Errors in insulin, errors in tools or simply changes in activity levels can have lethal consequences for people with diabetes.  This isn’t just talk. This is real.  I have lost friends to this disease.  Parents of children with diabetes  have seen their children die because of diabetes. Diabetes kills. It is a scary disease.

As a parent of a child with diabetes, I hope both my child and the general public know that I will continue to work hard every day to improve the lives of people with diabetes. I will offer a helping hand, a strong shoulder or the voice of experience where necessary. I will continue to dream of a day when we can say that we are parents of children cured of diabetes.