Its a new year. A lot of people make resolutions to do things like lose weight, check their blood sugars more often, or to get a bit more active. Another option is to choose a word to live by for the year. This is a word that inspires you and encourages you. A word that resonates with you and helps you move towards your goals. My word for this year is growth.
If you have been following Diabetes Advocacy for any length of time, you have seen a lot of changes.
We started out as a place for people to share information about the Disability Tax Credit. We grew to help families who were struggling with their children with diabetes in schools. Diabetes Advocacy became a hub for insulin pumpprogram advocacy and so much more. Over the years, we added a blog to document our lives, review books and products, and share information.
Diabetes Advocacy has also undergone some cosmetic changes. The website is now completely mobile friendly. We can be found on Instagram, Twitter, and Facebook. We have a monthly newsletter once again that shares tips and information.
Do you see how perfectly the word fits? Diabetes Advocacy is growing! This year I will continue to update the site and provide great content and more products. There will be more downloads and tools to make your life easier! There will be more of the great content you have come to love over the past 16 years.
What would you like to see added to the Diabetes Advocacy site? What topic would you like to see us tackle?
All of our downloads can now be found in our new digital store! We will continue to add more products on a monthly basis so be sure to take advantage of our growth!!
Did you make a resolution this year? Do you have a word that will inspire you? Let us know!
Life with diabetes is stressful but often we can find humour in the most interesting places! Here a few things that have made us all chuckle over the years.
Who can forget this video….
Where is the strangest place you have ever found a test strip?
We all know that test strips are actually alive. They move on their own. They can be found in the most unique locations. Here are some of the interesting places that we have heard of. These ones made us laugh…a lot! Please feel free to share with us some of the strange places your test strips have ever been found.
“Somehow, a One Touch Ultra strip ended up in my coffee cup at work this morning. No idea how it got there, but probably involved a morning blood test of 211 that caused me to cuss and toss my case across my desk. There must have been flailing test strips at hand, also. So, in the spirit, my Blood Meter decided to pose nearby the swimming test strip.”
Teresa I. found one in her daughter’s thick, curly hair after her daughter brushed it with a brush that was next to Teresa’s bed. The strip stayed in there through a full day of school!
Someone else found on that had been used as a bookmark in a school novel!
Test strips have also been found…
In the yard
Frozen in the ice
In a salad
In the washer and the dryer
Fishing tackle box
The teacher’s sweater pocket
On the back of the toilet tank
In a make up kit that was cleaned out on a weekly basis. How do they find their way to these places??
In a clean pair of underwear!
and of course…
On the stove!
Strange infusion set locations!
Not to be outdone, we have also found infusion set sites in some very odd places. We have found them in the tub, by the garbage, in the car and even the bottom of my Swifter vac! Always something new.
Fun Diabetes Diddies
Here are some great diabetes poems and tunes that make us laugh and appreciate the creative people in the diabetes community!
Oh A1c, Oh A1c, I raise my voice to heaven Oh A1c, Oh A1c, in hopes it’s less than seven The past three months we’ve had a slump Despite corrections from the pump Oh A1c, Oh A1c, just please don’t be eleven
Oh A1c, Oh A1c, we’ve tried to stay in range Oh A1c, Oh A1c, so it seems very strange That when I download from her Flash I see the spikes and then the crash Oh A1c, Oh A1c, you shall this Mom derange
Oh A1c, Oh A1c, I wake with such a fright Oh A1c, Oh A1c, to my alarm’s delight But one day when the Cure has come I’ll beat that clock until it’s dumb Oh A1c, Oh A1c, and sleep a silent night
Count the Carbs
Count the carbs with cups and scales Fa la la la la la la la la Guesstimate when all else fails Fa la la la la la la la la Hands and fists are quite a treasure Fa la la la la la la la la When without a one cup measure Fa la la la la la la la la
Factored carbs are even greater Fa la la la la la la la la But require a calculator Fa la la la la la la la la Units you must designate Fa la la la la la la la la Don’t forget to tare the plate! Fa la la la la la la la la
Candy canes are roughly twenty Fa la la la la la la la la You will have to fudge a-plenty Fa la la la la la la la la Guess them now and fix it after Fa la la la la la la la la Just correct and meet with laughter Fa la la la la la la la la
By Barbie Paulsen
I have a little meter I use it through the day, When finger’s done with bleeding Then dreidel I can play
Chorus: Oh, meter, meter, meter I use it every day And when I’m done with testing I throw used strips away (Hah!)
I have a little meter, It counts down really fast And keeps a steady record Of when I tested last
I have a little meter I take it everywhere But when I need to use it Sometimes it isn’t there
No More Lows!
(to the tune of “Let It Snow!”)
Oh the numbers at night are frightful And the meter now seems spiteful I’m exhausted and I think it knows No more lows! No more lows! No more lows!
All this sugar shoving has me praying That those teeth are not decaying How much longer is this going to go? No more lows! No more lows! No more lows!
For a while things worked out right Numbers were steady till dawn But now it seems every night I’m thinking about Glucagon!
Now I’m thinking it would be nifty If we could see one-fifty ‘Cause the glucose tabs are running low No more lows! No more lows! No more lows!
Rufus the Type 1 Brown Bear
by Alissa and Samantha
Rufus the Type 1 Brown Bear Had to always prick his toes And if you checked his sugar You might come to find he’s low
All of the other brown bears Thought that Rufus had Type 2 So when they had some candy, They would tell him, “Not for you!”
Then one day a CDE Helped him to explain, “I take insulin, you see, Sugar is just fine for me!”
Then all the brown bears nodded As they came and shook his hand “Rufus we’re really sorry, Now we finally understand!”
(to the tune of “Latkes”)
Test strips, test strips, I see test strips Not a little, but a lot of test strips Test strips, test strips, I see test strips Not a little, but a lot! Of test strips
Test strips are so useful when they show me my bg But they turn up later, reproducing magically!
Test strips, test strips, I see test strips Not a little, but a lot of test strips Test strips, test strips, I see test strips Not a little but a LOT!!
The weather outside is frightful! The temperatures are dropping and we are in the midst of deep winter cold. Managing to stay warm can be a challenge on days like these. How do you manage your diabetes as well? Here are a few things to remember…
Insulin is liquid. It can freeze. Make sure not to leave insulin in your car. When you are outside, keep it close to your body. This also means that if you are pumping, make sure to tuck your pump close to your body to keep things running properly.
If you think your insulin has been frozen, throw it out! Don’t take any chances. It will not work as efficiently once the proteins have been frozen.
That means keeping your diabetes devices warm as well! I just told you to keep the insulin in your pump warm, but did you also know that your pump (like your phone) also needs to stay warm? Keep your pump and CGM under your winter clothing and as close to your body as you can.
If you are using a tSlim pump, watch for the low-temperature warning on the pump. This will tell you that your pump is not functioning as it should because of the cold.
Check your blood glucose level.
I know, you normally check but when it is cold out make sure that you still check…a lot. Some people see their bg levels rise in the cold weather while others see it go up. Don’t guess or go by how you feel–check then adjust with food or insulin.
Before you check, make sure that your meter is warm as well. Glucometers function poorly below 40F (4C). If you feel that your glucometer could be too cold, warm it in your armpit for a few minutes. It will quickly return to a functioning state.
Keep your hands warm.
It can be hard to check your blood glucose levels when fingers are cold and blood isn’t circulating properly. Keep your hands warm and toasty to help making finger sticks a bit easier. Wear warm gloves. You may want to consider using mitts that have removable fingers to make it easier to check .
Carry glucose that won’t freeze.
Juice packs are a handy way to treat lows but when you are playing in the snow, glucose tablets and granola bars are probably a better choice. Also make sure to keep your glucagon warm and safe. Frozen glucagon will be as useful as frozen insulin.
Winter activities can be fun but make sure you are prepared. Follow some of these few hot tips and enjoy your time in Mother Nature’s deep freeze!
Diabetes is hard. Whether you live with the disease or you are the parent of a child with diabetes, diabetes is hard! I know, I said it twice because it is true. It can be exhausting and overwhelming. There is never truly a time when you can relax and say “whatever will be will be.”
There are times when you want to relax. You want to throw in the towel. There are times when you want to simply say “ENOUGH!!!” and hide under the covers for a the day. I am here to tell you to do it! Seriously, take a minute or an hour or a day and just throw in the towel so that you can pick it up again with more strength than you had before.
It’s in your best interest and the interest of those you love to take time for you. Take time to just let it all go. Here are five easy ways to reset yourself so you can continue on your journey with diabetes.
1. Hide out in the shower.
The shower is an amazing place. You can lock the door. The water pouring over your body can be calming and soothing. It washes away your tears gently and without judgement. The sound of the running water also drowns out your anguish.
When things seem bad…When you are tired and just want a break… take 5 minutes and hang out in the shower. Cry or vent. No one needs to know. No one needs to see. You can simply let out all of that pent up anxiety and allow it to flow down the drain.
After you are finished crying and yelling, you can dry off and get on with your day!
2. Go for a walk.
Ideally, go for a walk by yourself but if you can’t take the kids and just go! Power walk at first until you have spent all of that stress and tension out of your body. Let all of your frustrations be released in your strides. Slowly let everything go until you can slow down and enjoy the scenery. Breathe and just let it be.
Your heart will thank-you and so will your psyche.
3. Pass the buck.
Whether you have diabetes or you are the caregiver, let someone else deal with things for an hour or a day. Let them do the testing and the injecting. Give the meter or CGM receiver to a trusted companion or family member for a bit. Allow them to deal with things in their own way. Allow yourself to forget just for a bit.
It can be hard at first. Diabetes is so all consuming but it can happen. Don’t be concerned if the other person is doing things differently than you would. Let go. As long as no one’s life is in danger…let it go.
I have done this for my son before. There would be a day when I would do all of the testing, bolusing and carb counting. He would simply hand me a finger or his pump. Diabetes was not something that he was going to actively concern himself with managing for that time period. He loved the break.
4. Enjoy a date night.
If you are a parent of a child with diabetes, this is super important. Make time for you and your partner. If you are single, then make time for you and your close friends. Take time once a week or at least once a month, to focus on relationships. Leave diabetes in the hands of someone you can trust. Do not spend all of your time looking at your phone or texting home. Focus on enjoying yourself and recharging your batteries.
5. Meet up with other D-peeps.
This one may seem a bit strange. If you are overwhelmed by diabetes, why or why would I suggest that you hang out with other people who are just as stressed as you? Because they get it!
Seriously, meeting another person who lives with diabetes can be so liberating. They truly do understand carb counting and pump problems. They are the ones who understand the A1c report card and so many other aspects of your life.
Go to conferences, events, or socials. Talk to that co-worker who also has diabetes or that Facebook friend you met in a group. Share with each other. You won’t just talk about diabetes but they will understand that diabetes factors into so many other aspects of your life.
These are just a few things that can help to relieve some of the stress of living with diabetes. There are many other things that you can do. If you reach the point of feeling completely overwhelmed, please consider talking to your doctor or a therapist. Diabetes is hard. You need supports. Make sure you find them and use them for the sake of you and all of those who care about you.
Johnson and Johnson announced on September 5th of 2017 that they were closing the doors on their insulin pump division in Canada and the US. Animas Insulin Pumps would be no more. Animas insulin pumpers in North America were heartbroken.
While some saw it coming in the corporate rumour mill, others were blindsided.
Animas had done something that many companies in many industries are striving to do…they had created a feeling that you were family. Whether you were an Animas insulin pumper or you used another brand, you had probably attended an Animas event and were treated royally.
The employees with Animas all seemed to genuinely care about you. They checked in on you and took the time to know your family. I had the pleasure to work closely with many members of the Animas family over the years. They will be huge assets for the next company that employs them. I am sure that many of them are just as saddened as we are.
This is not the first time that an insulin pump company has closed its doors. We have been here before…twice.
Cozmo (personally a pump like no other) closed its doors in 2009. We still have two in my son’s closet. I have friends who still wear this as their pump of choice. It is doable even 8 years later.
Most recently, Asante, a pump revered by many who tried it, was also forced to step away from the insulin pump market. Their users were devastated. They were heartbroken and felt lost–just like Animas insulin pumpers are feeling today.
How did they go forward?
One step at a time. The great thing about insulin pumps is that, while some have quirks, many are pretty sturdy and last. If you have more than one pump in your house–usually because one was out of warranty and you purchased a new one right away “just in case”, relax. If for some reason, you current pump stops functioning, go back on your old one while you decide which pump to try next! Just make sure to write down those settings and keep them in a safe place.
What do I do now?
You don’t have to stockpile supplies You don’t have to run out and buy a new insulin pump tomorrow. The Animas press release stated that warranties will continue to be honoured until September 2019. Cartridges will be be available until that date as well.
Statements from both Animas and Medtronic note that supplies will still be able to be ordered in the same way as before. Nothing changes, except when your Animas pump stops working, you will not be able to purchase a new one.
So while we take a breath and rethink our next steps…our next pump…our next option, I want to take a moment and say thank you. Thank you to the men and women who worked so hard to make Animas a different company. I truly appreciated getting to know so many of you. You brought us a new experience in caring. I hope that we meet again soon, with a new company perhaps bringing new options in diabetes care.
Options are the most important thing. Make sure to always know your options and always choose the option that works best for you and your lifestyle.
This post was originally written in 2012. The sentiments remain the same. 9/11 was horrible. When you live with diabetes, 9/11 brought out fears and concerns that you would never previously have considered…
September 11, 2001. Is there any adult in North America who does not remember where they were on that fateful morning?
I had left my house early to drive to the airport 2.5 hours away to pick up my grandmother who was coming to visit from the other side of the country. My oldest son was in school and my youngest was with me for the ride.
I stopped to do a bit of shopping and was looking at paper towels when my cell phone rang. I was told “A plane has hit one of the towers in New York. There has been a terrorist attack.” It made no sense to me and I didn’t believe it. There had to be a mistake so I continued my shopping before the next leg of my trip.
A few minutes later my phone rang a second time. This time it was a woman from Air Canada who said, “We have your grandmother here. The plane can’t fly her because all air traffic has been grounded. We will be putting her on a boat and you can meet her tomorrow morning.”
What? The terrorist attack was real? Planes grounded? I was shocked to the core as I spoke to my grandmother who was in great spirits and excited to experience an Atlantic Ocean ferry boat crossing. We headed home and like many others, I alternated between being glued to the tv and checking my computer for updates from friends and family.
I had a cousin who was an NYC police officer. I had to find out if he was working that day or safe with his family on Long Island. Another cousin was due to go to traffic court that day in one of the Towers and I wondered if he went before the collapse? It was a day of chaos, fear and some relief.
By the end of the day, everyone was accounted for. There were a lot of prayers for those lost as well as those who made it out alive. As the dust settled–figuratively and literally, a new fear began to permeate. I live on an island in the middle of the Atlantic Ocean and can easily be cut off from the rest of the world–the rest of my family.
More importantly, if we were cut off how would I get insulin or diabetes supplies? My youngest son relies on insulin to live. What if we couldn’t get it as easily any more? How would I keep him alive? What if the terrorist attacks continued? Would they target pharmaceutical factories? Could I feed him no or low carb foods? Would he be okay? I could feel the panic welling.
I wasn’t alone in my concerns. Other friends with children with diabetes were thinking similar thoughts but some were much more resourceful than me. One friend investigated getting insulin from rabbits to use for her child.
Thankfully we never had to be concerned with any of those fears coming to pass. My grandmother is now passed on. Each year, we all continue to remember exactly where we were on that day and we say an extra prayer.
For those of us living with diabetes, we give an extra pause. We remain grateful for access to the supplies that keep our loved ones alive. It is oddly funny however that once diabetes enters your life, it permeates everything–even memories of disasters.
Heading back to school can be stressful. There are new books to buy. Every child seems to need classroom shoes, gym shoes, walking to school shoes and then there are the gym clothes, jeans and more! The list is endless but when you are a parent of a child with diabetes, the list is longer still. Thankfully there are a few basics to remember when sending your child with diabetes back to school.
Meet with staff
No matter where you live, you should always make sure that you have a meeting with school staff before your child heads back to school. If you live in an area that has 504 plans or any sort of diabetes care plans in place, this meeting can be where details are finalized. If you don’t have any sort of official plans in your district, a meeting with staff is still important.
You want to meet with staff to discuss what they can expect when they have a child with diabetes in their school. While your child may not be their first child with diabetes, each child’s care needs are different. It is important that they understand your child’s individual treatment plan.
At this meeting you will work together to establish roles. Carefully outline what do you expect from the teacher and the support staff. Make sure that they understand what they can expect from you. Finally, ensure that everyone knows what tasks your child can do on their own.
You should also discuss things like, how will exams be handled? It is important that school staff understand that diabetes can cause cognitive impairment when the child is out of range.
You also want to establish a method of communication. The school should understand that they can contact you and that you would like to be able to stay in touch with them. Working together will make the year go smoother for everyone.
Depending on the age of the child, the list of supplies that you require can be different. A small child will require a change of clothes just in case he/she is high and has an accident in school. An older child may require access to a phone or cell phone to ask you questions about their care.
Here are a few basic items that can be left in a backpack or put in a safe place at school.
juice boxes or glucose tablets
granola bars or other carb rich and carb free snacks
spare test strips
a spare glucometer
extra needles or pen tips
spare insulin vial (to be kept in a fridge)
ketone meter and strips
spare infusion set
spare insulin reservoir
sharps disposal container
Other things to remember
If your schedule allows, volunteer to be a part of activities at school. This will give you a chance to get to know school staff and they will learn a bit more about you. It will also allow you to discreetly keep an eye on your child’s care without them feeling different.
For younger children, check to see if supports or nurses are available through your district. The school may be entitled to extra funding that would allow them to have one on one care for your child for all or part of the day.
Make the year fun! Your child is a child first. Plan ahead with staff regarding things like parties, extra curricular activities, outings and exams so that your child gets the most out of their school year.
For a guide to care policies in many Canadian schools please check out this link.
Diabetes is exhausting. The emotional toll of test, calculate, bolus is incredible. I am lucky. I don’t have diabetes, but diabetes can still bring me down. Because I don’t have diabetes, when it does tend to be too much I can step away, put it on the back burner and regroup before I dive in again. I wish everyone with diabetes had it that easy.
For years I was my son’s external pancreas. It was exhausting. I never slept more than four hours at a time. If I woke up during the night, I tested his blood glucose levels. We had no CGMs. We just had me. It was my job to make sure that he was in range. I was the one to calculate carbs, adjust insulin ratios and log blood glucose readings.
My son tested and learned alongside of me but I carried the bulk of the burden…until he turned 16. At 16, he decided that he could handle it all. He carried the entire burden for the next three years unless he was visiting me. When he was with me, I took over as much as he wanted.
Taking over wasn’t the same as doing it 24/7. That being said, being an external pancreas also wasn’t the same as being the one to experience the highs, lows and pokes with needles multiple times per day. Not being able to “fix it” or take it away could (can) bring me down as much as the pressure of daily diabetes care.
I still wish that I could take the pain away. I wish that my son would know a different life. There isn’t a day that I don’t ache for the families and other people living with diabetes knowing that they can never stop testing or injecting. Their very lives depended on it.
As I brush away those feelings, a new sadness often creeps in and diabetes can bring me down again. The new sadness often comes from my advocacy efforts.
Ever since my son’s diagnosis, I have worked very hard in various advocacy arenas. I have worked with grassroots groups, individuals and large organizations to see changes for children and adults living with type 1 diabetes. This means that I also am exposed to the worst in the diabetes world. People come to me when they are struggling and don’t know where else to turn.
Don’t get me wrong, I love being that shoulder. I love being able to give back to them in the same way that others were there for me. The problem for me arises when we can’t see a perfect resolution. I ache when someone comes to me with a situation that I know there is just no current solution for. I want to fix it desperately but when I can’t? Diabetes can bring me down.
At some points that sadness because I can’t fix it has been overwhelming. Those are the times that I have had to step back a bit. I have had to reduce the time I spent on issues and allow myself to step back from the advocacy arena. During these times, I remind myself that there are many others out there who can handle it just as well and I regroup.
I will admit, sometimes diabetes has brought me down so far that I wondered if I would come back. Had my advocacy usefulness past? Was I too cynical? I can’t really answer that but I can say that I recharge and am pulled back into the ring by families and individuals who continue to reach out looking to me for help.
I don’t have diabetes. Diabetes can still bring me down but it never keeps me down. Each day I wake ready to work a little harder. Each day I will share what has worked for us and hope to inspire and assist others living with diabetes. I will continue to work with individuals and groups to create better care for people with diabetes regardless of education or income level. Diabetes can bring me down but it will not win. My battle won’t end until a cure is found.
If you have cancer, you are usually met with sympathy and compassion. A person diagnosed with heart disease is met with care and concern. When people find out someone has diabetes, the first reaction tends to be blame. What did the person with diabetes do to cause this condition? What have they done to have an A1c that high? Have you ever wondered what would happen if people with diabetes weren’t constantly subjected to blame and criticism?
Think about this….a woman goes into her doctor’s office and is told that she has breast cancer. What does her doctor do after breaking this news to her? Can you picture how her friends and family will react? Most likely the doctor offers support and treatment options. Her family will offer to assist her in any way that they can. Everyone offers sympathy and hope.
Next imagine what happens when a man walks into his doctor’s office and told that he has congestive heart failure. What does his doctor do? How how does his family react? Again, treatment options and hope are given we can be sure.
Now consider what happens when diabetes is the diagnosis…. A family walks into a doctor’s office. Their son hasn’t been himself lately. He is lethargic. He is drinking everything in the house and consequently is suddenly having accidents and can’t seem to hold his water. They know that something is definitely off.
The doctor tells them that their son has Type 1 diabetes. She asks if there is a family history of diabetes? She gives them a brief rundown of what diabetes is. The doctor provides a prescription for things like insulin, syringes, and blood glucose test strips. No treatment options are discussed. The doctor then tells the family that they will have to go immediately to a place called “diabetes education” for a bit more training.
The stunned family is pushed out of the door and heads to the next office. They are reeling. They don’t understand what they have been told. The poor family knew nothing about diabetes before this day. It was something that came from eating too much sugar but they didn’t feed their son sugar…did they?
The family has been told that they will have to inject their child with a syringe multiple times per day. The doctor has told them that if their son gets too much insulin, it is an emergency and he could pass out and die. They have been told that he currently has too much sugar in his body and he needs more insulin or he may got into a coma and die.
The doctor did asked them if there was a family history of diabetes. Now they wonder again if they caused this. Did they do something wrong? Did they pass on faulty genes to their baby?
This newly diagnosed family goes to diabetes education and learns all they need to know about diabetes in a few hours. They are told about carbohydrates, insulin, exercise and many more terms that are floating around meaninglessly in their heads. The family is overwhelmed and exhausted.
As the news of the young boy’s diagnosis reaches family and friends, well-meaning friends reach out and contact the family Their aunt tells them that their great-uncle had diabetes…the bad kind….he died. A neighbourhood child asks your son if diabetes is contagious because he is worried that he might “catch it” and then have to have needles too!
Can you see the difference in these three scenarios? In each incidence, the diagnosis is earth shattering. The people involved in all three stories are forever changed but in the first two cases, they are met with compassion and care rather than being the butt of jokes. When diagnosed with something other than diabetes, the individual does not seem to have to educate or correct misconceptions from family and friends.
Now imagine this…the same family meets with their doctor. She tells them that their son has diabetes. It is a serious life-threatening disease but working together, they will ensure that he will live a long and healthy life. She tells them about amazing treatment options and offers them numerous online resources.
A diabetes team comes in bring with them another family who also has a child with diabetes. This family will act as mentors for them. The parents will be able to share their fears and experiences and the children will be able to also share with each other. They will guide them to other supports. The family knows that they are not alone. They know that they will make it through.
Further imagine this family going home after insulin guidelines are established but they don’t come home to judgement and fear. Instead this family walks in the door to find that their neighbours have prepared meals with carb counts so that Mom and Dad can focus on their family. They see that Grandma has arrived to help out and learn diabetes care so that their son can still spend his summers with her.
The is way diabetes should be handled–with compassion and care. It does happen. There are some incredible diabetes teams out there. There are amazing people who understand and don’t judge.
Wouldn’t it be wonderful if this was the rule not the exception? Can you imagine if there were no more diabetes jokes? No more comments about Great Aunt Sarah dying from the bad kind of diabetes? What if parents no longer threatened their children with “if you eat one more of those candies you are going to get diabetes!”
That would be compassion in its purest form. It would allow families and individuals to deal with this new way of life with much more support and love.
It can happen but it takes work. We must continue to educate the general public. Educators and doctors must continue to offer compassion and support. It is important that those of us who live with diabetes constantly remain available and understanding towards those who are just learning about life with diabetes. Together we will create more compassionate resources for those with diabetes until there is a cure.
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….
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.