Category Archives: children with diabetes

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.

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

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.

 

 

The Bionic Pancreas Moves Closer to Reality

For the past year or so we have been hearing clips about the Bionic Pancreas Project.  I was lucky enough to have heard  Dr. Ed Damiano present about his  work at the CWD Friends for Life Conference in Toronto.  It was the first time that I was truly excited by what was happening in diabetes research.

This was a project that was privately funded and motivated by a father’s love. There was no political agenda to hold things up.  There was only his passion and desire to see his son safe when he could no longer be there to watch him at night.  His drive pulled at my heart and for the first time gave me hope.

This summer, clinical trials are continuing.  More adults are getting to experience life with the bionic pancreas.  More children are getting to experience it as well. According to the latest video, they are now reaching the stage to change the design making things more streamline.  This is moving quickly to become a reality!

Being me, and spending so many years advocating for access to better treatments regardless of income or insurance coverage, I can’t help but wonder what direction this project will take.  To me, and I am sure to Dr. Damiano, this device is the diabetes equivalent of a pacemaker and should come under the larger umbrella of our health care system making it available to everyone who is insulin dependent.

At this stage, they are far from knowing how things will proceed in terms of distribution.  We will have to wait.  While we wait, I will continue to work to see access to insulin pumps and CGMs for all people with diabetes regardless of age.  I will continue to put money into my son’s RDSP just in case he does have to purchase the system out-of-pocket to begin with.  If need be, we will advocate for access for everyone to this life changing technology but for now, I will watch and cheer from the sidelines.  I will hope that this will be the technology that changes the life of my son and all of our children with diabetes (no matter what their age).

Support in the Strangest of Places

I am an avid reader. I have loved to read since I was a child. If I could find a way to read for a living, I would be a very happy and ideally very rich person.  I read everything. I read action books, mysteries, spiritual books, diabetes books, and most recently a book about a mother of a girl who has anorexia.

I am not exactly sure what made me decide to open this book and read it.  Perhaps it is my own struggle with my body image. Perhaps it was the fact that is was a mother telling a story of her struggle with her child’s potentially lethal disease.  Whatever it was, this book quickly showed me that being a parent of a child with a disease–any disease, sadly puts you in a club with more similarities than differences.

Brave Girl Eating by Harriet Brown, first hit home when she wrote “you’re not to blame, you’re not alone, and you can make a difference in your child’s life“.  What a powerful statement! It needs to be a poster in our diabetes clinics.  It is a statement that each and every parent of a child with diabetes needs to fully understand and embrace.  As I have said before, we carry our own guilt and are further burdened by the misconceptions of others. We need to know that we are doing our very best and that is all that any one can ask.

For some reason, Ms. Brown seemed to make more than one comparison of life with anorexia and life with diabetes.  I am not sure if she knew someone living with diabetes or in her research she found some similarities but she does make reference to living with the disease on more than one occasion.  She also makes many statements that could easily apply to living with a child with diabetes.

She talks about feeling overwhelmed by her daughter’s illness and then feeling guilty about it. “I can take a walk, read a book, shut out the anorexia for a little while. But its insider her. She can’t get away, not for a second.” How many  parents of children with diabetes have felt that exact same way? How often have we felt guilty because we could sleep through the night when our child went away to camp or when we went on vacation and left them with a responsible parent or loved one? It hurts us to know that we can leave it behind but our children can’t.

She talks about things like her daughter lying to her about food and again the issue crosses over easily into life with diabetes.  In our case, our children tend to reach an age where they lie about food intake, insulin dosing, or bg level readings.  The violation of our trust is devastating either way and in both cases the lie is brought about by frustrations with a disease. It isn’t any better no matter where it comes from. The pain and sadness as a parent is equally overwhelming.

Ms. Brown talks about wondering if her daughter’s behavior is because of anorexia or simply because she is a teen?  When my son was small and would fall asleep during the day, I would panic and test him.  Was he sleeping because he was a toddler who was tired or was he low and had passed out? If he threw a tantrum, was he being a child full of spite and temper or was his rage fueled by high blood glucose and therefore he may not completely responsible for his actions? How did I decide? How did I find a balance with punishment? Like the author, I struggled.

In Brave Girl Eating, the author also talks about stigma.  In this case the stigma of a mental illness. In diabetes, we know that there are many stigmas and fighting the public’s misconceptions can often be almost as difficult as battling bg levels.  To make things even worse, there are an increased number of people living with diabetes who also are dealing with eating disorders (is it any wonder when their lives revolve around food 24/7) as well as depression.  They must understand this book in more ways than I can begin to imagine.  How painful.

Ms. Brown also speaks to the idea that anorexia has taught her to live in the moment. Ironically diabetes has had a similar effect on my own life.  Learning to live life four hours at a time was the only way for me to cope.  Nothing else mattered. Tomorrow was too far away but his NovoRapid would kick in within four hours and it could fix that high, maintain his perfect reading or be just enough to send him low and create more havoc for me.  Four hours–just get through four hours and then go forward.

As I mentioned, ironically she notes the similarity to diabetes more than once. In learning to live with the new normal of life with anorexia, she wrote, “I told her if she had diabetes, she’d have to test her blood sugar every day; at first it would be a pain, but she’d get used to it.  It would become just one of those things she had to do, like brushing her teeth.  It would become part of “normal” for her.”  We know that diabetes is a bit more than testing daily.  We know that you never really get used to lancing your finger each day, but it is something that has to be done…like brushing your teeth.  It is something that you somehow have to come to accept in order to move forward with your life.

Its funny where you find inspiration and camaraderie. I started this book because I was in part looking for insight into my own body image issues.  I finished this book realizing that parents of children fighting illnesses may have many more similarities than we thought possible.  When we open our minds and our hearts, we find support in the strangest of places.
eating

The Weight of Guilt

As I started to read Ginger Vieira’s book Diabetes Burnout, I was hit by an incredible sense of guilt.  Did I push my son too hard? Did I expect too much? I was later vindicated but I was reminded  the overwhelming guilt that comes with being a parent of a child with diabetes…or maybe its just me.

Well meaning people share with us many “reasons” that children develop diabetes and somewhere in the back of our mind’s ( well my mind anyway) we ask was that it? Was that why my son developed this disease? Did I not breast feed my son long enough? Did I feed him cow’s milk too soon? Was vaccinating on schedule a bad thing? Was there a family history that we missed? I know that I didn’t feed him too much junk.  I know that it wasn’t two years of chocolate bars that did this to him but maybe that first time that he seemed off months before I should have realized that he was seriously ill and that it wasn’t just the flu?

Eventually I realized that I couldn’t spend all of my energy feeling guilty about the “what ifs”.  Diabetes took up enough of my energy on its own…but that led me to a new source of guilt.  Had I denied my other son because diabetes took so much of my energy? My older son never complained but it was a question that popped into my head now and again.  We went to diabetes related events and he met many new friends. He always seemed to have more fun than my child with diabetes.

I was there for my oldest son in his events and activities.  He knew that when there was an issue that required someone to stand beside him, I always did.  I was also there for the softball games, school events, report card days, sick days, and driving school.  I was pretty sure that I had successfully found a balance.

But what about a balance with diabetes and my youngest son? Did it take over everything? Did he hate me because I punished him for diabetes related offenses? Did he feel that I had robbed him of his childhood by focusing on testing and injecting when he wanted to play and forget it all?

My children seem to be well-adjusted. We have memories of family vacations and times spent with each other. We communicate regularly.  I guess I didn’t scar them too badly–I hope.I didn’t have to feel guilty about robbing my children of their childhoods.  Diabetes changed things but it didn’t destroy it.

One other area of guilt seems to always flutter on the sidelines.  I know I am not alone in with this one. I have heard other parents mention it. Its the guilt that comes when our children go away and take diabetes with them.  It’s that time when they go to the other parent’s house, spend the night with a friend or with grandparents.  It’s that time when they go to camp for a week or move away from home. It is then that a new guilt moves in.  I no longer have to think about diabetes 24/7.  Oh I still wake at night. I still look at a meal and automatically count the carbs and dose insulin in my head.  I wonder what my child’s blood glucose level is at any given time.  I worry and wonder if he is taking proper care of himself, but I have a break.  I  don’t really have to be awake at night. I can enjoy that extra glass of wine without fear of dealing with a low later that evening.  I don’t have to remember to test after that walk.  I have it easy.  It’s not fair.  The guilt becomes stifling.

As a parent, I want to carry the burden of this disease for my son but I can’t.  I want to give him a break but I can’t even if I  get one! It doesn’t seem right. I must be a terrible parent…but maybe I am not.

When my son is with me, I help him with care when he wants.  When he has an issue and he is away from me, he calls and asks for help.  We talk about readings…when he is ready.  We talk about other things as well.  I work hard to make diabetes the last thing I ask him about not the first.

Guilt doesn’t get me anywhere. It’s a backwards looking emotion. Life didn’t come with a guidebook.  My children were not born with a manual attached.  I do my best. We all do.  Guilt must be released not harbored…and I do.  I have made mistakes but my kids are okay.  They are strong.  They are relatively healthy.  They are smart.  They do me proud.  Why waste energy with guilt? Move forward and smile.  It’s the only way to go.

Gifts like this make me realize that all is very well indeed.

Gifts like this make me realize that all is very well indeed.

Mom! It looks like I’ve Been Shot…Again

In honor of Throwback Thursday, here is a humorous post from May 4th, 2010. Enjoy!

Last night I wrestled my son to the ground and later heard about the consequences. You see said child, admitted that no he hadn’t been spending his time mulling over the perfect gifts to purchase for his devoted mother for either Mother’s Day or her birthday.  In some countries I am sure his actions would have constituted a hanging offense but in our house in meant that I tackled him, interrupted his Wii game, pinned him down and tickled him.  Thankfully I still have a few pounds and an inch or two on him so I can still win. 


The downside to this fun when you have a child on an insulin pump who wears sites in his leg is obvious to those of us who live there.  After the screams of “I’ve gotta pee!!!!”, came the grumblings of “You pulled out my site!”.  With the cost of pump supplies being covered for us, it felt good to say “Well, just go and change it.”  Once upon a time, I would have cried at the $20+ that I had just wasted even if it was in the name of fun. 


Being a teen, my son was in no rush to change the site and Mom had visions of highs for the rest of the evening.  The longer he waited, the less insulin he would get, the higher his bg levels would climb I was sure.  Again, being a teen and being my son, he stated that the site was salvageable and he had simply taped it in place.  I was worried.  Was the site really still in? Yes he assured me as he headed off to the shower.  His grumbling about being bested by his mother had been replaced by the comment that if Mom could wrestle him then wrestling with his brother should once again be allowed (It was discontinued after brother’s elbow met son’s eye and left a nasty shiner).  I attempted to burst his bubble but he still was quite proud of his logic as he headed off for his marathon shower. 


Once he undressed he proclaimed “Mom, I look like I have been shot!”  What did that mean? He told me that there was blood all over his leg.  I said that was it, the site was gone! He had to change it.  He proceeded to shower and I never got to really check out the damage.  He kindly left the dead and bloodied site in the shower for me though.  Ironically he was disgusted when he found it on top of an envelope later.  I had taken a picture and left it for him. He told me that the site should be in the garbage! Um, who left it in the shower to start with? Oy!

Another Corner Turned

The weekly bg reading review that I had dictated in September has long gone by the wayside. I occasionally ask about readings on the phone or over text conversations but I try to keep it to a minimal.  If my son gets into real trouble, he calls or texts me with his SOS.  Diabetes care is remaining in the periphery of our relationship as he strives to make it on his own. We still talk about care and I still like to know what is going on but I think I truly have turned a corner in my new role and acceptance of it.

A couple of weeks ago, I suggested that we have a phone conversation about his readings in the coming days.  My son told me that he had an upcoming appointment with his CDE.  I then suggested that we wait until after the appointment and then we could discuss what was or wasn’t done and see how we felt about it.

My son thought that was a great idea and we set our new date to chat.  Last week that day arrived.  I knew that my son’s readings had been uploaded by his educator (my son has managed to lose two cables for his pump and I feel bad contacting our rep for a third one). I went online to see what the readings looked like.

As I opened the screen I laughed and laughed.  There were a lot of boluses and insulin cartridge fills but I only saw two readings. I laughed some more! For a change, it was not me who got to look at no data and try to sort things out. It wasn’t me to go…”What gives?” only to be told that he had used other meters but didn’t have them with him. This was not my problem.  I laughed some more
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It felt good to have that burden lifted. Whether there were or were not readings, I was not the one who would bang their head in frustration and begin the tedious task of trying to track down information. The smile remained on my face.

Later that evening I called my son and we discussed his appointment.  It had gone well. He had readings on a different meter and the two of them had discussed the area my son knew was a problem.  My son was pleased that he wasn’t told what to do but asked his opinion on the problem.  Suggestions were made by both parties and my son left happy.

Mom wasn’t needed.  For a change, that felt okay.  My son was happy. He had made his own decisions. He had been able to talk to someone about his care and share his knowledge. It was a win-win situation as far as I could tell.

I will still call and talk readings. I will still be here to troubleshoot and to cheer from the sidelines but my son really is taking charge. He can do this. I always knew he could but the fact that he is doing it makes me feel a bit better…well for today anyway.
corner

Looking from a distance

Diabetes Blog Week
Today is Saturday’s snapshots. At first I was a bit troubled by this.  What does my life with diabetes look like these days? Well its different than even one year ago.  Should I show pictures of my son’s life? I decided that I shouldn’t.  My pictures would be of my life with diabetes…living with it at a distance.

Now when I find test strips at the bottom of my purse, I don’t swear and wonder how they got there, I think of my youngest son and smile instead.
IMG_1553IMG_1554


















My conversations are often done via text rather than in person…

















IMG_1494But we still get a chance to spend time together and share care when we can.

Fighting the Darkness

Diabetes Blog Week 
May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)

I love being part of Diabetes Blog Week because of the vast array of topics that make you stretch yourself, think and explore new avenues.  Today’s topic is one that is very personal and very difficult. I have dealt with some of the dark issues surrounding being a parent and living with a child with diabetes in last year’s webinar “Normal is Just a Setting on the Dryer” as well as throughout my blog over the years.

Most likely you have heard about the strong correlation of diabetes and depression for people living with the disease.  Diabetes presents many management challenges in learning how to be a pancreas.  It presents financial challenges in being able to afford the best care to be able to obtain your best bg levels.  Diabetes is often looked upon as something that the patient themselves caused.  Bg levels and A1cs are often judged as “good” or “bad”.  It is therefore not surprising that the stigmas and challenges of the disease can quickly become overwhelming.

As a parent, we do not have the same direct issues as our children with live with diabetes but in some respects perhaps its a bit worse because we carry the blame for it all. We ache when our child is having to deal with any of those issues. We desperately want to take all of the pain away from them.  We feel that we would gladly carry this disease to save them such pain and anguish.

Parents struggle with their guilt.  How did we let this happen to our child? What could we have done differently? Should we have breastfed longer? Was it a vaccine that caused this? Did we pass along faulty genes? It is our job to protect our children and we may feel that we have failed to protect them in the most profound of ways…we allowed them to develop type 1 diabetes.
Now I know intuitively that this is not the case. I know that I did not cause my son’s disease but was it my fault that he was so sick before he went into the hospital? I am educated. Shouldn’t I have known something was wrong? If I am honest, I did know that something was wrong. One day in the summer prior he was pale and sick…but it was just one day and we assumed he had a bug.  Before his diagnosis when he had thrush and was not himself, we had taken him to the doctor.  He said my son was fine.  I did take him back to my own doctor a few days later when things did not improve. I could not have prevented this but still the guilt lurks.

The guilt can get in the way of parenting a child with diabetes as well. We have so many issues swarming in our heads.  We have failed our children once by allowing them to get diabetes (yes, parents may have a bit of a God complex), so now it is vital that we work to keep them as healthy as possible. We get frustrated when our children lapse in their care. We become terrified when they are in the care of someone else. Will they be able to manage? We struggle to find a balance between allowing our children to learn on their own and the need to look after them at all costs.

In my own case, there were times that I would reprimand my son for forgetting a meter or strips when I really should have thought of them myself.  The frustrations of not being able to keep his bg levels always perfect, of seeing him sitting inside waiting for a low to come up when his friends were playing outside, the injustice of him having to carry so many supplies and medical devices just to go to a friend’s house would overwhelm me and boil over into anger at the silliest things. I would then worry that I had left my child with nothing but horrid memories of an ogre parent.

As my son has grown, I have come to my biggest challenge yet…letting go and finding my new place.  For the past 14 years, my one focus has been being a mom.  I managed to stay at home with both of my boys as they grew. I was able to devote a lot of my time to diabetes advocacy efforts and the care of my children which included 24/7 diabetes care for my youngest son.  My nights were spent fighting highs and lows.  My days were spent reminding him to test and bolus and helping him to count carbs.

One day it all changed. My son decided to move back to his home town and felt it was time for him to learn to care for himself. I was lost. I would wake up in the night and there was no one to test. I would sit down at a meal and I didn’t need to count those carbs. Yes, the world of diabetes advocacy still existed but did it still need me? There were many new parents who were just as passionate and they had children at home to speak about.

I had experienced depression before when dealing with a child with diabetes. As I mentioned, the frustration, guilt and anxiety can be overwhelming.  I got through with the help of some amazing online friends as well as supports in my life that were there to pull me out when I got too far down.  It was important for me to talk to people who lived there and got it, as well as people who had no clue but just wanted me to enjoy life with them.  That balance saved me on more than one occasion.

Having my son move away was different. Yes, I had many friends how also had children move away but their children had moved away for school.  Their children were out of high school and they seemed to have strong identities of their own.  I didn’t feel that way. Yes, I had a strong identity but in part that was because I was a parent of a child with diabetes and I spoke firsthand of bg testing and the challenges of raising him. Who was I now? I was not sure. I had started to expand myself and create a new business venture but it was not heading the way I wanted it to…and then my son was leaving. I was now a complete failure. I had no idea how to get out of the darkness this time.

Once again, my heart knew I wasn’t a complete failure or a bad parent (just as it said I was not the reason my son was diagnosed in the first place) but I still felt that way. The move wasn’t personal it was about a young boy wanting to stretch his wings and go back with lifelong friends rather than continue to hang out with his mother in a city that had not provided the same life-long friends. I had to get over myself. It has taken a lot to get used to the change. It has taken a lot to find my new place even in his life.

I don’t have a cure to get out of the darkness that can accompany raising a child with diabetes. I don’t have an answer that has worked for me. I still stumble and wonder “what do I do now?”  I am lucky in that I have a very supportive partner who is patient. I am slowly dipping my foot back into a bit of advocacy work.  I am working to find my way in life.

Diabetes is a challenge in itself but it also brings many hidden challenges for those who live with the disease inside of them as well as for those of us who just carry it in our hearts. The only thing we can do is move forward.  Seek help when you need it–from friends, from family and even from the medical or counseling community. There is nothing wrong with support. It is the only thing that gets us through and its strength can carry us through anything.
candle