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Tips and Tricks…day 5 of Diabetes Blog Week

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Oh my goodness, today’s prompt is seriously probably the hardest of the week.  Share you best diabetes tips and tricks. Do I have any? We put one foot in front of the other hand hope for the best. Does that count?

Okay, tips and tricks…well, the first trick I learned was when my son was first diagnosed.  We didn’t have Rufus the bear with diabetes but I knew that my toddler needed to feel that he was not alone. The way I did that was to give Elmo diabetes as well.  He had a stuffed Elmo that somehow made its way to the hospital with us.  As I was learning to inject a doll, I have my two year old a needle and supervised him giving Elmo injections.

Writing that sounds crazy. I gave a 2 year old a needle? I did. It was a pen needle and the tip wasn’t in it but I gave him the pen filled with insulin and let him pretend to give his stuffed toy an injection.  He was making his friend feel better just like I was helping to make him feel better.  It worked for us!

As he aged, new issues came up and bribery was introduced.  Okay, we didn’t use the term “bribery”, we referred to it as rewards.  If he ate his breakfast without a fuss, he received a sticker.  After a certain number of stickers a reward was earned.  It worked for a bit.

What tips did we use for storing supplies? Well for us storing diabetes supplies was relatively simple…totes.  We have totes on wheels and when they were too full, we also had totes that went under the bed.  This allowed us to have a large supply of glucometers and pump supplies for times when insurance coverage was not available. My son still has both the cart and the tote.

Finally our rule for travel is simple…always pack twice what you think that you will need and then throw in a little more!  Whenever my son travels, he seems to experience a lot more highs than normal.  We do more site changes.  We bring more supplies.

I have also learned to store insulin in more than one place when you leave home.  We traveled across Canada once many years ago.  All of the insulin was in the cooler.  The cooler was somehow put on the heater setting.  All of the insulin was at risk of being spoiled. I never did that again. Insulin is now scattered among bags for safe keeping.

The final trick we have used is all my son.  When your sites are starting to peel up but the insulin is still flowing, you don’t want to make a change and your readings are still good–use duct tape! We have medical tape.  We have opt-sites.  My son uses duct tape to hold his sites in place.  Yes, they do make a mess of your skin after but they do hold your site in! –You may be a diabetes redneck when??

The Healthcare Experience…Day 4 of DBlog Week

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

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Today’s prompt is a tough one and a very interesting one.  I no longer have a lot of  dealings with the health care system regarding my son but over 16 years we have definitely had highs and lows.

Our initial foray into the world of diabetes, involved a horrific healthcare experience–my son was misdiagnosed, sent home and almost died.  Thankfully that was probably the worst of it (I know it couldn’t get much worse could it?).  The upside was when he was finally diagnosed, we were given a doctor who truly helped to set us on a course for success.

My son’s doctor believed in the most advanced treatments.  He encouraged me to learn and to try new things.  The rest of our diabetes care team was the same.  They taught us carb counting when others were still using exchanges.  Equally important, as I began to learn and explore the world of diabetes, they were eager to learn from me.  That was both empowering and endearing.  They cared–we were a team.

Not everyone we encountered “got it” however and it has been important for me to try to empower my son in his own care.  Soon after my son moved away, he had some sort of an attack (for lack of a better word).  The doctors worried that it was his appendix but they never did establish what had happened.  He was rushed to the hospital and the health care team attempted to manage his diabetes.  My son told them point blank “You deal with what brought me here. I will handle my diabetes.”  I was very proud.  My son is quiet.  It was very important for him to be able to do this for himself.

He is now a young adult.  He now sees a new team of doctors.  He faces new challenges…and as a mom on the sidelines it is driving me crazy.

He doesn’t feel that the new team has any idea about his diabetes care.  From my limited knowledge, I believe it is made up of people used to dealing with older adults with Type 2 not young people who have lived with Type 1 all of their lives.  Because of the area that he lives in, he is unable to “fire” them and find a new team.  I have reminded him to politely let them know that he does know what he is doing.  If he is showing them readings like I saw when he visited me, they prove that he does have this down pat.

For the moment, he is biding his time until he can move to a new team.  I am hoping to see him move back with me this fall to attend trade school. I have a friend who is now a CDE for adults. I am hoping to be able to get him in with her. I think it will be a huge help to him on all levels–she is a nurse, she lives with diabetes, and she has had diabetes since she was his age. A win-win-win.

In the meantime, the issue does continue to frustrate me.  Youth with diabetes have enough challenges.  They face many issues with transitions and lifestyle changes. It would be nice if more of their diabetes teams could be supportive and work with them.  There has to be a mutual respect of knowledge.

I continue to remind my son that the health care providers have something to offer and he must share with them that he is knowledgeable as well.  He finds it a challenge.  He feels his knowledge is far greater than their’s and sadly, it may well be true.  I then remind him that he has been very lucky. Over the years he has sat and spoke with some of the greatest diabetes minds in North America.  This is not a privilege that everyone has had.

Is there an answer? Balance.  I truly wish that there was more balance.  Patients are learning more now through their own research and through the experiences of others.  Doctors and educators are also learning but there must be a partnership.  Neither should be in a power position.  Both should be working toward the common goal of best physical and mental health for the individual.

What’s in a Word? Day 3 of Diabetes Blog Week

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“The pen is mightier than the sword.”

“The tongue can pierce a heart. ”

“Words can inspire and words can destroy. Choose yours well.”

We have all heard the sayings.  We have also all felt the sting of words.  Words are very powerful.  They have a huge impact on our lives.

Today’s prompt for Day three of Diabetes Blog week, asks us to discuss the power of words.  How do we feel about the word “diabetic” for example?

I always refer to my son has  a person with diabetes.  “Diabetic” is not a word I have ever used around him or anyone that I know living with the disease.  Despite that fact, he will occasionally call himself a diabetic.  Does this mean that he seems himself as the disease? No but this condition has been with him for as long as he can remember.  It is as much a  part of him as his pump, meter and lancing device are.  They keep him alive.  He has a bum pancreas.  He understands that his daily routine is different from others. He doesn’t see it as a major obstacle.  Diabetes, diabetic, person with diabetes….they all just seem to be terms to him–terms that really don’t change much.

Some people are offended by the use of the word “diabetes”.  It is a word that is thrown around by the media and accompanied with a great deal of blame.  Diabetes happens to fat people who don’t care about their health. Diabetes is what happens when you feed your child a diet of chocolate bars from birth to age 12 non-stop.

Can you see the insanity? To me, the solution is not a name change.  The name has been changed–we once had juvenile and late-onset diabetes, and now we have Type 1 and Type 2 diabetes.  Another name change personally will change nothing.  The attitude and awareness must change.

No one should be blamed for their illness.  Education must continue.  We should unite in that effort not add to the shaming.  Cartoons that suggest that if Jimmy had twelve cupcakes and ate ten that he would have diabetes are just wrong.  I don’t care that it doesn’t say he will have Type 2 diabetes…it shouldn’t say diabetes period. It is not funny. It is simply cruel and that is wrong.

There are words used in diabetes care that  matter deeply to me.  The words “test your blood sugar” for example.  Those are words  that I have worked to be exceptionally careful with.

“Test” is a word with strong connotations in our society.  It suggests a black and white outcome–pass or fail, success or failure.  Blood glucose readings are often high or low and sometimes even “in range”.  To call the task to get those readings a “test” suggests that the number will show your worth–how good of a pancreas you were.

Yesterday we discussed the mental drain of diabetes.  For me, equating a reading with passing or failing adds to that burden.  It was very important to me, especially remembering that my son has been hearing readings since he was two years old, that numbers be just that…numbers.

I tried to stress that readings were tools.  They were a reference point to move forward from.  A reading that was too high was not a fail, it meant that he needed more insulin and next time we may need to factor in something else when dosing.  A reading that was too low as again something to learn from.  Of course a reading that was perfect was reason to dance, celebrate and pat ourselves on the back for being just plain awesome.

Words are powerful.  They can make you feel strong and invincible.  They can cut you to the core and make you feel worthless.  In life, I try to choose my words carefully. I make mistakes. We all do. I am not hypersensitive to the words that others use. I take my cues from my child and continue to make sure that he is not defined by the word “diabetes” but accepting of a life with this unwanted passenger.

Diabetes Blog Week Memories

How did it happen? Diabetes Blog Week is coming to an end already. I admit that it has been a huge challenge to take part this year.  It happened to fall on the week of my stepson’s wedding.  This meant that while I did my very best to have posts ready to go a bit ahead of time, I really didn’t get the chance to read as many posts as I wanted. I plan to make up for that next week!

I am not sure how many of the past six years of Blog Weeks that I have participated but I have to thank Karen so much for doing this! Each year I find the topics intriguing and find more and more people to follow and read.

As I said, I still have many more posts to read (and I do plan to read a lot more and continue reading them long after this week has ended). Of the ones that I have read, a few have struck me for different reasons.  Thank you to Arden’s Day for opening your blog to guest bloggers.  I have enjoyed Scott’s posts and of course loved his book but his post from Kelly Griffin really touched me.  My son is very private about his diabetes care and her words gave me a better understanding of him.

I absolutely loved reading Rick Phillips post called Wearing your Pants Backwards.  This quirky view on life in general was perfect and fits very much with the attitude of myself and my children.

The absolute, without a doubt best, more inspirational and moving post that I read this week had to be from Life on T1.  Alanna’s open and honest post struck me and brought tears to my eyes on so many levels.  I have heard many wonderful things about Alanna in the past but when this post came up in my news feed…well do yourself a favor and read it especially if you are a woman. Heck, if you are a person, you should read Alanna’s Clean Out.

Of course, Diabetes Blog Week also gave me a chance to catch up on the writing of old favorites like Mike from the Corner Booth. Whether posting on his own blog or writing for Diabetes Mine, Mike’s writings are always great to read.

Thank you to everyone who stopped by this week to read and leave comments. I appreciate your kind words and I look forward to keeping up with many more of you in the coming year!thank-you

My Favourite Blog Post?

 

Today’s Diabetes Blog Week prompt asks for my favourite of those that I have written.  Seriously? That is a challenge!! First, I don’t write thinking,” Wow, I am awesome!”  I used to write thinking that no one would ever read what I had to say.

As I realized that they did, I just wanted to post things so that other parents would know that they were not alone. I tried to find humour in some of those events.

I have written posts that have come from my own struggles and guilt as a parent of a child with diabetes.  The post written after my son told me that he wanted to move back with his father for his final two years of high school was definitely one of the hardest to write. Trying to find a balance of honestly, emotion and not sounding as lost as I felt was a huge challenge. The positive comments made me feel better for sharing.

I have tackled topics that many of us want to ignore like Dead in Bed but lately I have tried to educate through posts like my most recent Dear John and Jane Public and looking at the cost of diabetes care if it were me and not my son with the disease.

What is my absolute favourite? What makes me smile? Any post that shows my son’s great attitude and quirky sense of humour.  There have been many comments over the years that have come out of nowhere. Some of them I have caught and  published like when he told me…”“You know Mom, if I had to explain to someone what it felt like to be high or low all I would have to do is tell them to watch Suzie and Sweedums eat breakfast.  Suzie is what its like to be low and Sweedums is what its like to be high.” Suzie will  demolish a bowl of food before I have put food in Sweedums’ bowl.  Sweedums will eat one piece of food at a time, analyzing it and taking over to a mat to eat every single morsel.

The one post that will make me smile every time is when I described my son’s logic when it came to site changes. He was a day late doing his site change.  I was leaving him to it when he stopped me asking me why I was leaving?  When I told him that he was more than capable of doing a site change he replied…

“Yes, but Mom, you realize that you only have four more years to do site changes for me. I will turn 18 and move on and you will never have this opportunity again.  You should be savouring these times just like you say how important it is to share each birthday with me before I leave home. Actually, think of these site changes as being just like my birthday but every three days.  Treasure them. In fact, we can make it like my birthday if you want. You can even buy me presents for each site change done!”

Ironically, he is right about me missing it that is. I still get to do site changes when he visits. I don’t miss diabetes or harping on him to do a site change but since it is a part of him and I miss him, well I do kind of treasure those times when I did do his changes.

 

The post just once again showed his unique perspective that some days makes me want to bang my head against a wall but most days makes me smile and proudly say “Yes, that is my son!”Celebrate

 

 

Diabetes Made me Do it

Its the first day of another Diabetes Blog Week! I am so excited to be a part of this wonderful adventure once again.  As a blogger, it allows me to have topics chosen for me and write about topics that I may not have otherwise thought about.  As a reader, it gives me the chance to see many new blogs that I may not have come across before.  In other words, its a win-win week that I hope you enjoy as much as I do!

Today’s prompt asks me to share  what I have done because of diabetes that has made me the most proud or what good thing has diabetes brought into my life?

Obviously I am proud of the way my son is learning to handle his own diabetes care.  How much of that is up to me and how much is just his personality? We will never know but he takes each day in stride and never seems to complain about his lot in life. I can’t ask for much more than that!

For me personally, diabetes has brought an incredible network of friends.  Those friends have encouraged and inspired me to be involved and help to create changes to the world of diabetes in Canada.

It amazes me to look back at how long I have “known” some of these people.  There are the core group of parents that I met on the Children With Diabetes Parents Email list almost 15 years ago.  They have been with me through the good and bad.  They have been there with a hug or a shove in my personal life as well as in our life with diabetes.  The connections made there have been some of the dearest of any I have ever made.  They are truly the very, very best thing to come out of a life with diabetes.

With their encouragement and prodding, I began to look to see what I could do to better improve the lives of people with diabetes.  It led me into two areas–both dealing with fairness.  First there was the issue of fairness in our tax system.

Not long after my son’s diagnosis, I learned of a thing called the Disability Tax Credit.  In reading the description, I knew that my son qualified. In time,  I came to learn that the Canadian Revenue Agency did not always see things the same way that I did.  Some people with diabetes were qualifying, some weren’t.  Some people with diabetes were fighting for this right in court, some weren’t.  I sought to equalize the playing field and make the powers that be understand what was really involved in living with diabetes.

During this process, I met more amazing people.  There were families struggling to get by. There were adults who just wanted to be treated equitably and see some financial relief from the burden of diabetes care costs.  I interacted with many people, some I still hear from and others I see in posts on various social media platforms.  Each one was vital for their support and their belief in what we could do.

Together we did make a difference.  Today, all children under the age of 18 are given the DTC upon receipt of the T2201 from their doctor indicating a diagnosis of Type 1 diabetes.  Adults are also eligible for this credit but still must first prove that they are intensively managing their diabetes care and that it takes over 14 hours per week.

When I read posts online about people getting this credit or when  I read others advising their friends to check out my website for tips and information, my heart swells. I know that I have made a difference.

The other thing that I have done because of diabetes that makes me proud is my work with parents and educators in regards to sending children with diabetes to school.  This issue has been something that I have worked on since my son was 3 years old.  He will soon be 18.  The situation is not perfect, but I am happy to say that there have been profound and real changes in how diabetes care is viewed in many Canadian schools.

When I began this journey, the only province to have any sort of legislation or provincial policy in place was New Brunswick.  To date, provinces such as Quebec, Newfoundland, Nova Scotia and BC all at least mention the care and treatment of children with diabetes in schools in their provincial education policies.

We still have a long way to go but I no longer receive numerous telephone calls each fall from parents struggling to get help.  I hope that that is a sign that there is more and more support out there for families and students.

Diabetes is a crappy disease. It ruins holidays. It never goes away. Its unpredictable at times and never takes a rest.  It has however brought me a network of friends that have kept me sane throughout the years.  It has allowed me to help in areas that I never would have known about otherwise. For those things, I am truly happy to be able to say that “Diabetes made me do it!”d made me

 

 

Hello…I’m a Glucometer

Diabetes Blog Week

Write a short story personifying a diabetes tool you use on a daily basis. A meter, syringe, pump, pill, etc. Give it a personality and a name and let it speak through you. What would it be happy about, upset about, mad about?  (Thank you Heather of Unexpected Blues for this topic.)

Hello, my name is Fred and I am a glucometer.  You would think with a job as important as mine that I would get a lot of respect but I don’t.  I am shoved in dark pockets, thrown around and basically taken for granted. Its a very rough life.

I am expected to be ready for service at all times of the day. It doesn’t matter if I worked hard all day, they still expect me to be bright-eyed and shining at three in the morning. And when I say shining, I mean that they really want me to light up all nice and bright showing them glowing pretty numbers. When they are done with me, they just toss me off to the side again.

My job is tireless.  They smear blood all over me.  They curse at me when they don’t like what the reading is.  Like that is my fault? How is it that I control what their blood glucose is going to be? I deserve a lot more respect.

The only time I get respect is when the parents or the doctor take a look at me.  They know how important I am.  They look at my display as if they are reading a holy gospel.  They value me and my knowledge.  My owner? Well, he looks at me like I am a rock, a burden that he is forced to carry around. I am the unwanted younger brother that he has to take everywhere.

Why does he have to think of me that way? It hurts my feelings. I am just trying to do my job. I am trying to work with him to keep him healthy.  I know that it can be tedious. It’s not picnic for me either. I mean, I have to be on all of the time! There is no time when I can be just a little less accurate. I have to bring my A-game every time we meet.  Its exhausting but I don’t get any praise or appreciation.

He just doesn’t get it and some times I get mad as well and when I do, I get even in my own way.  When he just grumpily and shoves a strip in me and expects me to instantly produce results, I come back and tell him “Error 4”.  Oh does that get his goat! He has to retest and take his time to treat me a little nicer–getting all of his blood just so on the test strip so that I will read it for him.  After he has done that, I reward him by saying “HI” but he doesn’t often see the humor in that one. I don’t understand why.  Isn’t it important to be friendly now and then? Perhaps if he could be a little nicer, we could work together a bit better and I wouldn’t have to resort to cheap jibes.

Maybe one day he will get it. One day he might understand how important I am! Oh well, at least he takes me most places. I usually only hear about the spots that we go to from the inside of a pocket but at least I get to tag along.  It’s not easy being me.  I guess it’s not easy being him either, but I still say, “work with me dude! It will make things so much easier!”  Darn! I shouldn’t have said that so loud, here comes another check. Back to work!

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Four Hours, Just Four Hours

Diabetes Blog WeekYesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day.  Or more specifically, a hard diabetes day.  Is there something positive you tell yourself?  Are there mantras that you fall back on to get you through?  Is there something specific you do when your mood needs a boost?  Maybe we’ve done that and we can help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.)

Is there a mantra that I fall back on to get me through a hard diabetes day? Absolutely! It is one that I share with newly diagnosed adults and parents who are struggling to get through. I remind them to look at life in four-hour blocks. If you take everything in four-hour strides and you can ride through anything.

When diabetes seems to be kicking your butt every morning, look at how things are going between lunch and supper. Are things okay? Give yourself a mental high-five and celebrate that victory rather than dwelling on the post-breakfast spike that this threatening to drive you over the edge.

Do overnights seem overwhelming? Again, break it down.  How are things from snack until 12 or 1am? What is life like in the deepest part of the night? Are things settled before breakfast or has chaos been awakened in those four hours? If you break it down into six four-hour periods, life becomes a bit more manageable and instead of seeing all of the bad, you can savor some of the good.

Why do I have a four-hour mantra? Because early on I learned that my son’s Humalog was supposed to last about 4 hours.  He was injected at 8am for breakfast, then at noon for lunch, around 5pm for supper and then again at 9pm for his nighttime snack.  I was going crazy trying to see a perfect 24 hour day. I realized that looking at a complete day was never going to make me happy. The only way to see success was to look at small chunks of time.  Coincidentally, that was also how we would make changes to his regimen.  Was his breakfast ratio of carbs to insulin off? How about at bedtime? Life was naturally being broken down into 4 hour chunks for me so why not work with that?

Now I know some of you will say, but we are using a pump so that won’t work for me.  Yes it will!  Chances are high that you are still doing things like having breakfast, lunch and supper.  You are probably still going to bed at one point as well. All of these events can be broken down and again my four-hour mantra applied.  Was I a successful pancreas this afternoon? Yes? AWESOME!! Let’s break out the happy dance!!! Did I have an issue after supper? Okay, let’s look at what can be done.

Life is less overwhelming in four-hour shots. It can be applied it outside of diabetes as well.  Are you wanting to change your eating habits? Did you have a great breakfast? Pat yourself on the back. Over did it at lunch? Do better tomorrow. Can you see how easily this works?

Life can be overwhelming.  As we discussed yesterday, life with diabetes can make it worse.  Taking life four hours at a time has allowed me to focus on what I need to change and to praise myself when I get it right…and we all need a lot more praise in our lives.

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Fighting the Darkness

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

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

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

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

Parents struggle with their guilt.  How did we let this happen to our child? What could we have done differently? Should we have breastfed longer? Was it a vaccine that caused this? Did we pass along faulty genes? It is our job to protect our children and we may feel that we have failed to protect them in the most profound of ways…we allowed them to develop type 1 diabetes.

Now I know intuitively that this is not the case. I know that I did not cause my son’s disease but was it my fault that he was so sick before he went into the hospital? I am educated. Shouldn’t I have known something was wrong? If I am honest, I did know that something was wrong. One day in the summer prior he was pale and sick…but it was just one day and we assumed he had a bug.  Before his diagnosis when he had thrush and was not himself, we had taken him to the doctor.  He said my son was fine.  I did take him back to my own doctor a few days later when things did not improve. I could not have prevented this but still the guilt lurks.

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

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

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

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

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

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

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

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

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

candle

 

Ode to a Needle

Diabetes Blog Week
 Day two of this year’s blog week asks that we create poetry. I have not done poetry since high school and sadly that was not yesterday.  I therefore cheated and enlisted the help of my children.

This is what we came up with…

syringeNeedles are wonderful
Needles are fine
They poke and jab and and puncture me,
But keep me alive.

Some folks thinks needles are scary;
With that I must agree
But the needles that I must use
Allow me to continue to laugh, and play and be this awesome person–me!

By Liam and Barb…and don’t worry folks, we will not be taking up poetry as a full-time thing