Tag Archives: parenting a child 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.

Diabetes is hard! Some days you’re the windshield…some days you’re the bug

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. 

Diabetes is hard

“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 and was off 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 (288) 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  and created a pool of  blood. 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 new equipment.

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.

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 pillow case.  I cleaned it off as best as I could and  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 retest.  He was  5.5 (99) and I was finally off to bed for two hours before it would be time to test 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.

 

 

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.

 

 

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!

Sad to see Dex Leave

Ready to use DexoCom!
Ready to use DexoCom!

As I mentioned, we were privileged to be able to try using a DexCom for seven days over the Christmas holidays. I was super excited. My son however was not exactly thrilled but willing to see what all of the fuss was about.

I am pretty sure I allowed him to put down his suitcase and open his Christmas gifts, but I don’t believe I gave him time for much else before we learned how to start the DexCom process.  I had been encouraged to watch the video a few times before actually inserting the device, so I had my son sit with me as we began.  The video paused and allowed you to do a step before continuing.  This was very user-friendly.

As we reached the insertion stage, my son suggested that we stop a bit and replay multiple times before injecting him with anything!  I agreed.  I was terrified that I would mess up.  Not only are these sites expensive, but we only had one to try and our rep was away enjoying the holidays.  I had to be perfect!

I was finally confident that I should be able to do this. My son was not exactly feeling the same level of confidence but eventually relented and allowed me to jab his body with the large contraption. It was a success! The sensor was in his body and he had not died. I asked him about the level of pain he experienced.  (It didn’t look like a big needle so I never even suggested asking him if he wanted to numb the area–bad mom)  He said it was close to having a site inserted–maybe a little less painful.  I was psyched!

Next came putting on the transmitter.  That was a challenge. I understand that it gets easier with time but I will say that figuring out how to get it to attach the first time took us a bit.  Once it was on, it was time to wait our two hours before the first calibration.  I was super excited to see what would happen.  My son was still not as thrilled but glad to no longer have his mother poking at his belly.

Two hours later we did our first calibration and my son resumed his normal activities. One of the first thing he did after putting in the sensor was to enjoy a nice jacuzzi tub.  The sensor is waterproof but I was still having a mild heart attack wondering if it really could take this.  I told my son that all was fine as long as the receiver stayed dry…but I was still nervous.

Would the jacuzzi mess things up? Despite telling him that he didn’t have to test as much with the DexCom, I made him test a few times just to prove to myself that it really was as good as everyone said.  The research didn’t lie.  The end users didn’t lie.  This little machine was awesome!

The accuracy was not perfect the first few days.  I had been told that the DexCom accuracy was not as great on the high-end as it was on the low-end.  We found that to be true.  When it said he was high, he was often higher still. That didn’t bother me though. It showed me a trend. He was high and going higher (we had a bad site).  It really didn’t matter if he was 15 or 25 (270-450). He was high and needed a correction. A finger stick gave us where to correct from but the DexCom told us if we were on the right track.  For me, the combination was amazing!

image
Yes! It really did say he was dropping!

During the trial period, we had extreme highs (First lesson–do not calibrate when high. Since the accuracy already isn’t great, your sensor will be off a bit more than when its calibrated at reading closer to in range).  We also had lows.  The first low my son had while wearing the sensor came as we arrived at our cabin. We were unpacking our gear and of course he couldn’t help.  He was low.

“Really? Is it working? Did it tell you that you are low? Can you feel it? Are you actually low?”  My son scarcely avoided an eye-roll and passed me his receiver. It read low! There were downward arrows! He said that yes he felt low and we treated him.  The DexCom then told us that he wasn’t falling any more.  He could help us get the rest of the gear out of the truck and he would be fine! Oh happy days!

Yes, I loved the DexCom.  As we became more familiar with it, the accuracy also improved. I am not sure if  the sensor was working better with his body or if the increased data that it had to work with through a few days of calibration improved the accuracy but it was wonderful!

At night, I would get up and take his receiver into my room so that he could have a break from diabetes care.  It sat on my night side table and instead of getting up and poking him, I could roll over and watch a graph.  A non-D parent will never know how soothing looking at a graph can be but let me tell you, it was AMAZING!image

There were nights that my partner wanted to throw it out the window.  My son was high.  The DexCom told me so.  We corrected. The DexCom said it didn’t work.  We injected.  The DexCom said he was falling.  We wanted that.  The constant dialogue of beeps and vibrations were sending Larry over the edge while giving me peace of mind.

Not all nights were full of alarms.  The DexCom allowed me to also see my son have some of the best readings.  I watched one night in amazement has he maintained a steady 4.9mmol (88mg/dL) for hours.  Such a lovely number would normally have sent me into a night filled with stress. Would he drop? Would he rise? I would be testing a lot wondering or I would be pouring chocolate milk down his throat hoping to slow down a decline in blood glucose levels.  With the DexCom, I was able to simply relax and  watch a perfect night unfold in front of me.

The biggest gift that the DexCom brought me was pride in my son.  When he moved away to live with his father, we said he would share readings with me and we would talk about his care.  Well, reality was very different and with the exception of “yep, all is fine”, I have had no real information on how he was doing.  When he visits with me, there are often problems due to change in activity levels and eating as much of Mom’s food as he possibly can in a short window of time.

He still ate a decent amount.  He also was a little less active that he might have been at his father’s but his readings were generally quite good.  The DexCom showed us a few issues–some of which he knew about but hadn’t dealt with. Together we talked about changes.  He challenged me about some ideas and after a discussion, we made the adjustments that we both felt were required.  I was proud to see that he had listened to what he had been told over all of these years.  He was taking ownership of his disease and doing a good job of it.

I was sad to see day 7 arrive.  It was the end of life with a CGM.  It also meant that my son was heading on a plane back to school and his other home.  The last part was the hardest but it also hurt that he would be leaving without this amazing technology.

I asked him what he had thought about the whole thing.  Once again, he was not impressed with the extra site. I think he quite enjoyed being able to simply look at a graph to know what to do about his readings–he was rising, he was falling, he was nice and steady.  He is not quite ready to carry a second device however nor is he ready for a second site.  I see that changing in time.

Our rep kindly offered to let him use it again in the near future if he wants.  I am sure we will take her up on that offer.  I can see his attitude towards the DexCom changing with both use and the changes in his circumstances–moving from the classroom into the workforce.

I was always a firm believer in the benefits of this technology.  This one week trial just confirmed it.  Anyone living with diabetes should have access to this device.  It will change their lives and improve their diabetes care.  A running live-stream movie of blood glucose readings rather than snap shots throughout the day offers such incredible freedom and peace of mind. It should be a standard of care for everyone who has to live with diabetes.

 

So much changes when you are 18 and have diabetes.

My son is 17. That in itself is a shock.  How did my baby become 17? His older brother has been in the work force for a few years and now owns his own house.  Again, how has any of this managed to have happened so quickly?

When your child is born, they tell you to savor each moment because time will pass faster than you could imagine. Some days, when your children are small, the days can’t pass quickly enough. You try to hold onto time as much as you can but despite your best efforts you wake up and have to plan for the graduation of your youngest child.

I have my son’s graduation ring purchased.  We will get his pictures done in the coming months.  There will be a suit and shoes to buy that he will either purchase with me or with his father.  There is planning for what school he will attend in the fall and registering for programs.

That is where the normal part of being 17 ends.  Being a person with diabetes who is 17, there are other things to consider as well. He is counting down the number of appointments left with his childhood endo. He will be turned over to a different doctor when he turns 18 in the fall.

He doesn’t think about it but he only has 8 years left under our provincial insulin pump program.  I worry about what sort of benefit program he will have in his chosen field. I will be looking into it soon…just in case.

Because my son will be 18 in the fall of 2015, his Disability Tax Credit certificate will also expire.  In order for him to continue to own his RDSP, I have to ensure that a new DTC application is filed and approved within the next year.

The last year of high school. So many wonderful memories but when you are a child with diabetes, there are also so many new changes to consider.  New schools, new doctors, new insurance issues, new responsibilities. Where did the time go? happy18thbirthday

I am the Robert Munsch Momma. What type are you?

I was recently approached by the Outreach Coordinator of Oscar Health Insurance and asked if I would do a post on what it was like being a mother of a child with diabetes. She asked that I look at a title along the lines of “I am a mother.  What type are you?”  I thought that there could be a lot of posts with that title so I decided to make my title a bit more specific to my situation.

When my children were small I loved reading Robert Munch books to them.  One book that resonated with me was “Love you Forever“.  A lot of people find the book creepy. Sadly, to me it makes a lot of sense.

My youngest son was diagnosed with type 1 diabetes when he was only 2 years old.  He is now 17.  I have spent a lot of nights crawling quietly into his room to test him, feed him, or give him insulin–all while he remained sleeping.  I have spent a lot of those nights watching over both of my children thankful that they were alive and praying that they remained safe.

The days, just like for the mother in the book were different.  When my son was small, getting him to eat was a challenge. Like his mother, he was not big on breakfast.  Unlike his mother, he had injected insulin in his system that demanded food to cover it. Our life was hell.  I would have to force feed a willful toddler who had no idea why this was happening to him,  Despite the tears and frustration of the long days,  each night I still would see his beautiful sleeping face and I would again be grateful for that insulin that was keeping him alive.

Like Robert Munsch’s character, my son grew, and grew and grew until he too was a pre-teen who walked his own path.  No matter how long he had lived with diabetes, he forgot to test. He missed insulin doses.  He forgot to change his infusion sets…and he lied about it.

There is a lot of guilt when dealing with a child with diabetes. We, as parents, should have been able to protect them from such an evil disease. They should not have to bear this burden.  With the help of people like Joe Solowiejczyk, I learned that it was okay to punish for diabetes related lapses just as I would for failure to brush his teeth or do his homework.   I learned that  as this was the hand that we were dealt and it was up to us to make the very best of it.

My son continued to grow.  He grew and he grew until he was a teenager and once again, there were new challenges for both of us.  As he grew, he worked to push me (and diabetes) further away as he struggled for his own independence.  He no longer wanted to be bothered by a mother asking about readings.  He wanted to work-out and talk to his friends. He wanted to do it on his own…and I was terrified.

When my son turned 16, he took the biggest leap towards his own independence.  He chose to move to finish his last years of high school. Today, I no longer see my son daily. He lives about 1000km away from me.  We text and call. When he has a problem, I am always there at the end of the phone but he deals with his own doctors appointments and daily diabetes care. I still worry.

He comes to visit me during the holidays and instantly my “momma clock” returns and I am awake to test him during the night. He enjoys the break and I am once again the mother in “I’ll Love you forever”. I am creeping into this big, young man’s room, quietly lancing his finger and saying a prayer of gratitude when the readings are okay and I know he is safe.

In another year, he will be finished high school and plans to move back in with me to complete his post-secondary training.  It will be a different dynamic for both of us. He is no longer the little boy I once rocked to sleep. He is now a young man with a full life ahead of him but no matter what…well my boys will always still be my little boys and I will always be just like that momma in Mr. Munsch’s story….  I will love them forever. I will like them for always.  As long as I’m living my babies they will be.

LoveYouForever

What if it were me?

For those who don’t live with diabetes and don’t know, November is Diabetes Awareness Month. It’s a month that people who have lived with diabetes, share and work to educate the public to the realities of diabetes.

As the mother of a person with diabetes, I know a lot about diabetes. I know how dangerous it is. I know how difficult it is to maintain healthy blood glucose levels. I know that it is a 24/7 job. I understand the technology. I understand the cost but I don’t live with it going on in my own body.  I can only empathize and guess.

The other night my mind began to wander as it normally does.   I started to imagine what it would be like to be the one living with Type 1 rather than just the support system.  It was terrifying and overwhelming.

I didn’t think about the lancing of my fingers. I jump at the sound of the lancet being shot out so the process would take a ridiculous amount of time for me.

I didn’t think about injecting myself with a needle or infusion set. I cringe at needles and look away when I am getting blood work done but do what I need to do when I must.

I didn’t worry about counting carbs for every single morsel that entered my mouth. Its something that I tend to do without thinking about it after years of totalling my son’s meals.

I did think about living life on a roller coaster however.

As a parent, I know how rare it is to have more than a few hours of blood glucose levels in range at any given time.  Yes, you can be in range for 4, 6 or even 12 hours at a time but depending on the regimen and your activity level that is a lot of work to maintain.  The rest of the time you are fighting highs or lows.

Dealing with numbers is one thing.  Dealing with the physical feeling of your body being high, being low, being “normal” must be incredibly difficult.

I thought about being low. I know how horrible I feel when I am overly hungry.  I know how I feel when I have somehow missed a meal and my stomach begins to growl, my head pounds and I feel more agitated than normal.  I also know that during those times my blood glucose level is usually only hovering between 4.2 and 3.9 (75-70). In other words, just barely low if low at all.  My son can be much lower and I don’t hear him complain.  What must he and others be going through?

I thought about being high. I don’t have a lot of reference there. I have had that occasional meal that you know is a major carb overload and I feel lazy and sluggish.  I am guessing a person with diabetes feels that way and worse.  When it gets really bad, my son is constantly in the washroom, guzzling water and fighting the need to throw up.

I appreciate that the extreme end of vomiting when high is not a norm, but I am sure that some of that stuff like the drowsiness or the thirst is relatively common as his numbers climb.  That has to be annoying.

Just in case it isn’t enough to have to monitor your food intake without respite, and just in case it isn’t torture enough to be jabbed and stabbed multiple times per day, factor in the physical response.  Factor in the response  of your body to your errors in providing the exact right amount of insulin for all situations.  Consider how you would feel if your blood glucose level suddenly plummeted as you were in the middle of something important.  Consider the feeling of a sudden spike because you are facing an anxious situation. This the rollercoaster that you ride every minute of every day when you live with diabetes.

No wonder people burn out.  No wonder our children want us to take it away.  No matter what we do as parents; no matter how empathetic we are, most of us don’t live with diabetes on a daily basis.  We can’t begin to truly fathom how it physically feels.  No wonder many would just as soon forget.  After two minutes of thinking about what life must really be like for my son, I couldn’t handle it.  No one should have to handle it.

I am grateful for the discovery of insulin that allows people with diabetes to live, but insulin is not a cure.  They need a cure. safe_image.php

The Why

Diabetes Advocacy.  Its a simple name for a website that I created so long ago that I honestly can’t remember the exact date. The name happened when my mother told me to name it what it was…a site dedicated to advocating for people with diabetes.

An online dictionary defines advocacy as “the act of pleading for, supporting, or recommending”.  For years I have pleaded for changes in various aspects of life with diabetes. I have challenged the federal government in regards to their treatment of people with diabetes who were receiving life sustaining therapy.  I have supported efforts to raise awareness and fight for the rights of children with diabetes in schools.  I have recommended the coverage of insulin and CGM therapy by all provincial health programs in Canada.

Why do I do it? A lot of people ask me that question. Some people think that I do it for the money.  That’s pretty funny since no one pays me. I would love to be paid but I have yet to find a way to have that happen.  Is there fame in the world of diabetes? Yes, a few people seem to recognize my name but I am not a wildly famous superstar.  I am just a woman, a mom, and a partner who occasionally opens her mouth on issues that bother her. A few people assume that I do it for my son.

In part they would be right but I don’t just do it for my son.  Every time I hear from a person with diabetes, no matter what the age, I think of them as someone’s child.  I see my son in them and my heart aches.  There but for the grace of God is my child.

I want to get up in the middle of the night for them to give them a break.  I want to be there for them when they are alone and fearing a low that will leave them vulnerable and in danger. I want them to have a “normal” life with “normal” concerns like what will I have for supper not how will I pay for my test strips this month.  I want them all to live their lives to the fullest not live their lives to the fullest with diabetes. I want to wave a wand and make that last part of the sentence disappear for each and every one of them….including my son.

I am lucky.  People share their stories with me.  I hear about your triumphs and your pain.  I cry with each of you and celebrate your victories as well.  My son is very relaxed about his life with diabetes.  He knows that his momma’s got his back but in covering his back, I hope to also cover many others as well.

Why do I do this? Why do I take on challenges for strangers with diabetes? Why do I take my time and resources to share information, create webcasts, and take part in conferences? Because not everyone can but everyone deserves a voice. I do it because I want to fix it for all of you and it kills me that I can’t.  I want my children to know that I tried for them…and for all of the other children out there who couldn’t do it alone. It really is that simple.

The momma bear in me makes me do it.
The momma bear in me makes me do it.

Back in the Saddle

I am in heaven…night testing, bolusing, and test strips in strange places means my boy is home! Its a quick stop to buy school supplies and prepare to head back for his final year of high school, but I get to enjoy my son.

It has been almost a year since he moved away to finish his last two years of school. It has not been easy.  A very hands on Mom had to go cold turkey knowing virtually nothing about his daily care.  It still kills me.

Yesterday we splurged and hit Dairy Queen. A quick chat with Siri led us to the carb count of his monster treat.  I was scared by the amount of insulin it suggested. I know that he was a little nervous as well but we took a chance.  Despite Dairy Queen, a full supper prior, and  bag of popcorn after, when I checked him at 4:30 this morning his reading was perfect!

I didn’t really have time to celebrate however because when I grabbed his meter (which is also his pump remote), it told me that he was out of insulin! Despite his pump alarming, he was sound asleep and living on fumes. I had no idea how long his cartridge had been empty but woke him up to get it filled.  I told him that he was going to be high later. He was confident that he would be fine.

Three hours later, I tested him again.  He was right. We must have caught the pump just as it was alarming and somehow he avoided any bottom of the cartridge air bubbles because he was still perfectly in range.

He has only been here one day but his readings have been perfect. He has counted his own carbs.  He has tested (with some mom prompting of course) and his readings have been acceptable.  I don’t know what his A1cs have been like. I don’t know if this is the norm or we have been really lucky but I am going to be grateful for day one and leave it there.

I have my son here to visit. Diabetes is not getting in the way by making him miserable and unable to chat or do things with me.  He seems to be understanding how to handle “his disease” even if we do have the occasional differing of opinions on how to proceed.  Life is pretty darn good!

back-in-the-saddle