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.

Do you know the signs of diabetes?  We now have a great download to show you the symptoms of high and low blood sugar levels

Diabetes is harder some days than others

This post was originally written in 2009.  My son now manages his own diabetes care.  He wakes for his lows.  He treats his highs but one thing remains the same–diabetes is hard no matter who is responsible for care for the daily tasks. 

bug on windshield from Diabetes Advocacy

“Some days you’re the windshield, some days you’re the bug.” Today I am definitely feeling like the bug!

It was after midnight and of course I was dying to get to sleep. I had set my alarm for early the next morning.  It would be my son’s last day of school.

I found a meter and a strip. I grabbed a lancet, waded through all of the junk that the boys had left on the stairs rather than putting away. Off I headed to test my son’s blood sugar level. I hope it would be the last check for a few hours. One check and I could sleep!

We had been out for pizza earlier that day to celebrate good grades so I was certain that my youngest son would still be high. He had been  16 mmol (288mg/dl) earlier in the evening, so you know I was certain that I was going to be able to rest.

Wrong! Diabetes doesn’t work that way.

I took the meter. I lanced his finger. A pool of blood was created. The strip refused to suck.

What the???? Okay, I cleaned the finger. I got more blood. I tried again. The glucometer just barely accepted the blood. I waited for the reading…E5. It was an error reading!!

There hadn’t been enough blood to get a blood sugar reading. Oh the lovely four letter words that were on the tip of my tongue as I headed back downstairs to get more test strips and another glucometer.

I found a new meter. I was certain that this one had to be better than the last. A new test strip was in my hand. The same lancing device was being used. Back up the stairs I went.  This time I grumbled and picked up items as I went by.

Once again, I lanced my son’s finger. Again, I got a large amount of blood. The strip sucked the blood this time! I walked towards the stairs not even considering having to correct a high blood glucose reading. That was a good thing because he didn’t need insulin.  He was 3.2 (57).

He was low!

I uttered a few more choice words as I shuffled off to get some juice. I filled a glass, found a straw and trudged up the stairs for a third time in less than five minutes.

My son wasn’t keen on drinking. I continued to cajole him until he finally began to sip. Thankfully he drank it all except the last few drops. Those were sucked up into the straw and somehow flew all over his pillow.  I was not happy.  There was now strawberry juice all over a cream pillowcase.  I cleaned it off as best as I could.

I waited.

Fifteen minutes can become a lifetime when you are dying for sleep. These are the moments when you just think to yourself…diabetes is hard.  Why us?

Eventually, it was time to recheck.  He was  5.5 (99) and I was finally off to bed for two hours before it would be time to check his blood sugar again.

Diabetes is hard.  Diabetes care is a challenge.  Some days things seem okay…and other days you feel like you are a bug squished against a windshield.

If you are feeling overwhelmed by diabetes, join our online group and share your feelings with others who live with diabetes too.

What Parents of Children with Diabetes Wish You knew…

parents of children with diabetes

Have 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….

time together

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 anyway 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…

insulin pump tattoo

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 must use at all times.

An insulin pump is not a cure either. 

An insulin 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.

Swept away and retired to a desk

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

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

sweeping up
Sweeping out the old

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

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

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

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

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

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

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

The many ways we feel guilty as a parent of a child with type 1 diabetes

I originally wrote this post in 2014. My son is now an adult but no matter what his age, the words below still ring true. After all of these years, my children continue to make me proud but I still occasionally feel guilty as a parent of a child with type 1 diabetes.

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

As I started to read Ginger Vieira’s book Diabetes Burnout, I was hit by the many ways that I feel guilty as a parent of a child with type 1 diabetes.  Did I push my son too hard? Did I expect too much?

As I read further, I felt vindicated but I was also reminded of the overwhelming guilt that comes with being a parent of a child with diabetes.

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 occasionally ask, was that it? Was that why my son developed this disease? Did I not breastfeed my son long enough? Did I feed him cow’s milk too soon? Was vaccinating him 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. 

Did I spend enough time with my child without diabetes?

feeling guilty as a parent of a child with type 1 diabetes

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 a hint of guilt still tugged at my subconscious.

Did I focus too much on diabetes care when dealing with my child with diabetes?

diabetes supplies

As a parent of a child with diabetes, I also felt guilty as I wonder if I had achieved a balance with my youngest son? Did diabetes 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 blood checks 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.

I feel guilty that I can take a break from diabetes but he can’t.

feeling guilty when taking a break from diabetes care

One other area of guilt as a parent of a child with type 1 diabetes always seems to flutter on the sidelines.  I know I am not alone in with this one. I have heard other parents mention it. It is 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.  Often, I still wonder what my child’s blood glucose level is.  I worry and wonder if he is taking proper care of himself while I have a break. 

It isn’t like I really have to be awake at night. When he isn’t home, 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 of a child with diabetes, 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.

Your best is all you can do.

best mom pendant

Guilt doesn’t get me anywhere. It’s a backward-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.  The guilt we feel as parents of children with type 1 diabetes must be released not harbored…and I do. 

I have made mistakes but my kids are okay.  They are strong.  My children are relatively healthy.  They are smart.  My boys do me proud. 

Don’t waste energy on feeling guilty as a parent of a child with diabetes. You cannot feel guilty about all of the things that weren’t perfect. Move forward and smile.  It’s the only way to go.

Having trouble moving forward? Remember to take life four hours at a time.

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_1553 My conversations are often done via text rather than in person…IMG_1554 But we still get a chance to spend time together and share care when we can.IMG_1494

 

 

Fourteen years of living with type 1 diabetes

child with diabetes

14 years ago today my world turned upside down. It was not a fork in the road. It was not a minor blip on the radar of life. A bomb exploded and it forever changed the landscape of my life. It was the day diabetes entered our life.

14 years ago this morning, I was looking at a sick little boy in my arms and was waiting to be able to take him in to see our doctor.  I was ignorant of what was to come.

And just like that, he is a young man who happens to have diabetes

14 years later, my son is a young man making his own decisions and stretching his wings…who just happens to live with Type 1 diabetes.  I am stumbling to come to terms with my new role of no longer being a hands-on mom and often find myself looking back to see what I have done in hopes of figuring out where I will go next.

There have been a lot of changes in diabetes technology

insulin pumps after 14 years of type 1 diabetes

14 years of type 1 diabetes have brought many changes.  Insulin pumps are more readily available and continuous glucose monitors are no longer things found in hospitals that are blinded for 7 days.  They are real tools that families and individuals are using in real-time to help fine tune their care.

14 years later and still living strong with diabetes

14 years ago, type 1 diabetes threatened to take the life of my son.  Today he is strong, vibrant and learning how to handle his disease.  Diabetes does not control him. It’s just his “thing” to live with.

We have not always seen smooth sailing. We have had our moments.  He has driven me crazy at times–failing to test or change infusion sets. He still can drive me nuts. I have yelled at him because of my own failings and frustrations.  We are not perfect but we are living. As the commercial says, we are living with diabetes. It stops him from little.

Type 1 diabetes has brought us life long friends

friendships after 14 years of type 1diabetes

Type 1 diabetes has brought me the most incredible friendships.  I have friends throughout the world who have reached out at various times in my life to help me up or shove me forward. I hope I have done the same for them.

14 years seems like such a long time and yet I can see us back in that ICU just like it was yesterday.  Some things you never forget…my son has but I haven’t.

Thank you

On days like today,  I look back and say thank you! Thank you to the doctors and specialists that kept him alive and have taught us through the years.  Thank you to the Higher Power that has been with us through it all. Thank you to the friends and family who have joined us on this journey. Thank you for 14 years of good health and improved technology!

Diabetes sucks but life after diabetes…well it’s still life and that is pretty amazing!

Back Away from the Pump. It is NOT Your Toy.

At the end of August, my son got a new pump. We had been lovers of the Cozmo pump for over 10 years.  It physically hurt to have to put it away but with no warranty and a child living hundreds of miles away, it seemed best to make sure that he had a pump with a company still behind it if he had any issues.

We both shed a few tears as we put his beloved “Lean Green Pumping Machine” in a box and brought out his new pump.  When we sat down with his pump trainer, the trainer dealt with my son. Mom stayed in the background.  The trainer talked to him when going through how it worked. My son is too big for me to hover over his shoulder so again, I just sat back and let him learn. It felt a little strange.

After she left, he let me touch the remote bolus and test drive it a bit.  Soon though, it was hands off. I could touch it at night if he was out of range but that was it. I had not other reason to use it. If there was a change to be made, he did it. If there was a site change to be done, he did it.

As time went on, I used the pump less and less and I began to put it out of my mind. This was not my new toy to check out. It was his.  When we had a problem, I grabbed the manual to help him figure out where to go but again, I checked a book while he was six steps ahead of me navigating through the pump screen itself.

It has been five and a half months since my son started on his new pump and now I can barely figure out how to bolus him with it. On the other hand, he has no problem making corrections, adjustments or anything else required.

A few weeks ago, a friend and I were talking about new pumps for our kids. Her child is also holding strong to her Cozmo but they know that a new pump needs to happen sooner rather than later. I casually told the mother not to be concerned about the pump that her child goes on next because she won’t be playing with it. It will be her child’s pump and Mom doesn’t need to know how to operate it.

She thanked me.  We have been so used to handling everything, checking out each device, and learning on an ongoing basis that as parents, we can forget that this isn’t our disease. When our children were 2, 3 or 5, this was our disease no matter what anyone else said. Now that our children are 16, 17 or 20 we have very little input.  We have been relegated to the sidelines whether we wanted to be or not.  We can make suggestions. We can nag a little but our children are now young adults who will do what they feel is best. The only thing we can now hope for is that some of what we have taught them along the way has found a home in their own thought processes. It’s a huge step but we can all do this with one foot in front of the other…and back away from the pump. animas-vibe

Another Day, Another Feather left behind

The tree is down.  The Christmas decorations are put away for another year.  The house is a little bit more quiet now without the steady banter of two young men and the constant opening of the fridge.  My children were home for a week and it still surprises me how much I miss them when they are gone.

In one week I crammed in as much mom stuff as I could.  There was providing them with food that they love, doing their laundry and sitting around enjoying conversations.  We watched the latest Hobbit movie together and all huddled around watching to see our cousin’s name in the credits.

There was the other stuff that moms take care of too like a stop at the bank to fix issues on both children’s bank accounts.  There was a call to a meter company to replace the iBGstar that my son refuses to part with even though the display was not working properly. There was also the purchase of the small things needed to make life run just a little smoother that only Mom would think of.

It was a busy week.  We quickly fell into the routine of Mom doing more testing and helping with carb counts.  I later wondered if I should have offered to do everything for one day to give my son a complete break. I realized quickly that the idea would not possibly work given his current eating habits. He eats 24/7. I would not be able to keep up. It was much easier to offer carb counts and test while he slept in.

Despite delays caused by Mother Nature, my boys have returned to their other home.  They are slowly getting back into their routine and I am slowly returning to mine.  I still smile however when I see those loose “feathers” in the strangest places.  There is a test strip on the floor in my office where they spent hours catching up on the latest season of Sons of Anarchy.  There is a piece of an infusion set sitting on a table in the living room. How it managed to end up there is beyond me but there is sits waiting to be used…or find a garbage can.

My new role in my son’s life still leaves me feeling off balance and unsure at times. I continue worry and sometimes feel guilty because I no longer have to think about diabetes 24/7.  That is how life goes.  We teach our children and then one day have to step back and pray that they have absorbed some of what we have given them…and remember that we are their for them when the stumble or just need a shoulder to lean on. d feathers

The WAG King

“Did you bolus for that?”

“No its Christmas. I am not bolusing for Christmas. I decided that I need a vacation.”

“Funny…NOT. How much are you going to bolus for that? Do you even know how much you ate?”

“I am thinking that 60 sounds good. I like it. I think I will bolus 60.”

“Have you actually totaled what you ate to get to that number?”

“No. It just sounds good.”

At this point I mentally groan and begin to do the calculations….”You had potatoes, dressing, some carrot, a glass of milk, and then there was the pie.”

“Don’t count the pie. I just bolused the pie. The pie is covered.”

“Okay so your main meal.  That would be about 58g CHO.”

“See I told you 60!”

Darn, he still has it. He can still make a complete guess on a meal and manage to come within grams of what I would think the carb count for the meal would be.  The WAG King holds his throne for another day.

IMG_0090
No this wasn’t his 60 CHO meal honestly 🙂