Still Finding Feathers

My nest has been empty for over a month now and it still taking a bit to get used to.

My son has been quite good at making sure he uploads his pump for me to look at his readings. He appears to be testing more than once a day so I try to offer little criticism and simply make gentle suggestions where needed.

Moving diabetes to the back of my mind after all of these years is a challenge.  I still wake up a lot during the night. I still worry but that is what Moms do. I worry about both of my children. Diabetes just gives me one more thing to be concerned about.

I really don’t miss diabetes. I don’t miss having to get up in the middle of the night. I don’t miss wondering why he had a higher or lower reading than expected. I don’t miss time spent at diabetes clinics.  I don’t miss trying to figure out a new insulin pump.

I do however miss my son. Don’t get me wrong, I miss both of my boys but I have had a bit longer to get used to my oldest being away.  My youngest and I have spent a lot of time together over his lifetime.  His best friend is my best friend’s son.  We visited together. We went on trips together, we counted carbs together.  He is now enjoying life on his own–doing stuff without Mom always there. I am sure he is loving the freedom! It’s different for me.

I still miss walking into the kitchen and seeing him sat at the table surrounded by a fridge full of food.  I miss seeing his chin up bar dangling from a door way. I miss his dry, quick whit and timing. I miss the chicken fights that we would break into as we met in the hall. 

We text every day.  We talk at least once a week. I make sure that diabetes is the last thing that we discuss. It is rarely ever the very first. I ask about his day, his school work, his friends…then I ask about readings, meters and his pump. When he tells me “I screwed up.”  I try to remind him that his job as a pancreas is both unnatural and exceptionally difficult.  As long as he knows what he did wrong and he tries to fix it next time, its something to simply learn from and move forward.

I still find test strips in the most unusual of places.  There was one in my washer even though I have not done any of his laundry in ages.  We have a fridge full of insulin “just in case”.  There is a bottle of test strips that I found hidden in a box and part of an insulin cartridge that still sits in a place of honor in my car.

My new life of a Mom of children who no longer live at home is still very busy. My boys are always in my thoughts and their ability to stand on their own shows that I have taught them independence.  They will be home at Christmas.  I will savor every moment. I will fall back into the testing routine.

Life is changing.  Change is part of life but finding those little feathers (also known as diabetes waste) in hidden places of the house no longer make me grumble at their ability to “jump” out of the trash.  They now make me smile because they remind me of my son.

empty nest Dstyle

Go Ahead and Complain

The other week I noticed nothing but customer service complaints filling my Facebook news feed. I was shocked and wondered if there was something in the wind.  It didn’t matter if someone was in a restaurant or dealing with their cell phone, they were having issues with horrific customer service. Sadly, this made me feel better when I began to have my own issues.

My son’s glucometer was having issues. It was eating batteries with astonishing speed. It had reached a point where he was no longer using it much to my dismay.  This is the meter that “talks” to his pump and gives me a true idea of his bg levels each week when we review things.

I called the customer support number and so began my run around. It appears, in a review of my situation later, that every crack that I could fall through I did! It was terribly frustrating but it also reminded me of a few things.

First is how important our pharmaceutical reps can be when we have problems.  After asking around and finding out that the service I was receiving was extremely unusual, I contacted my rep to see if she could be of any assistance.  She was horrified!  She apologized and was instantly looking for any and all help that she could get for me.  She did not stop until things were resolved.  I loved this lady before she became my son’s pump rep and now I truly love how she goes above and beyond for her customers.

Secondly was how those annoying spiels about how they are recording your conversations actually have a benefit to the customer. If you know exactly when you called and you feel that you were not treated properly, management can pull up the call and see what has happened.  In my case, I was treated fine, my issue just got lost in many transitions.  I have however received horrible service from a person on the phone with a different glucometer years ago.  The woman told me that the problem with my meter’s accuracy was related to me having dirty towels that my son was drying his hands on.  To say I was insulted was an understatement.  Later follow-up resolved that issue and the woman was re-educated.

Customer service is huge for those of us who’s lives, or children’s lives, depend on medical equipment.  Personally, I have met many people in the industry from all over North America.  They all genuinely want to help.  “Stuff” does happen.  Mistakes can be made but I have also learned that these same companies want to learn from their mistakes.  Let your reps know if you have issues.  They want to fix things for you. They want you to be healthy and satisfied with their products. That’s good for everyone.

complaints

Diabetes is a Piece of Cake

Diabetes presents many challenges.  There is the obvious one of trying desperately to match food to insulin while factoring in nutritional content, exercise (both past and anticipated), emotions, health, and more.  There is also a challenge in trying to get the outside world to understand that our fears and concerns are real.

Fourteen years ago, I knew nothing about diabetes. I had no idea how serious it was.  Today, my biggest challenge is getting people to understand that this invisible disease that appears to be a piece of cake to manage only looks that way because of the hard work that is put in behind the scenes.

The average person who walked by my son on the street would never know that he has lived with diabetes for almost 14 years.  He has no complications. He doesn’t have a cane or any limbs amputated. He looks like an average 16 year old male.

They might notice his insulin pump or his remote meter when he tested. If they did they would probably be amazed by the technology and think that it made life pretty easy. If they watched him eat in a restaurant, they would seriously wonder what all of the fuss was about. With the exception of the diet drink that he would order, the rest of his meal would be more than two average people would eat at one sitting and he would somehow find room for dessert! How can life be that much of a challenge?

What they don’t see is how hard it can be to make that technology  work to its very best. They don’t see the time that my son and I spend reviewing  data, discussing what happened when he went low–had he been exercising in the past 24 hours? What was his reading in the test before? Did he count the carbs properly? Did he factor in fat and extend the insulin delivery over time or simply give it all in one shot?

They don’t see us discussing highs–was there a site failure? Did he run out of insulin? Did he make a mistake in how many carbs were in his food? Did he over-treat the low that he had earlier? Did he miss a low and his body rebound with a high? Is he growing? and the list of questions goes on and on but only we hear them.

They don’t see the effort and thought that goes into every setting on his pump.  The details that I examine before inputting the amount of insulin he gets delivered into his body just so it can function.  They know nothing of the detailed calculations involved in deciding how much insulin he should get for each crumb of bread or bite of apple that passes his lips.

An average person does not realize that keeping my son alive and as healthy as he is has taken a lot of work and involved some serious stress at times.  Diabetes does not stop at night and neither do we.  My son is tested throughout the night and if he is high or low during that time, he must be treated.  Nights become more dangerous because unlike the day when he tends to notice fluctuation in his blood glucose levels, at night he will sleep through all but the most extreme highs.  Whether we are up for 15 minutes during the night or two hours, life goes on and the world does not notice what we had to do to keep my son alive and healthy.

The biggest irony of diabetes personally is that the harder you work, the more normal you look,  the more people think that you are exaggerating just how much work it takes.  Diabetes is an invisible disease.  With the exception of a blood test, a needle or a pump, no one “sees” the challenges that diabetes presents. They don’t see the hard work behind the scenes. They tend to think that you must be over-blowing the fears and concerns that you have.  They do not understand that the reason that you or your child looks so healthy is because of hard work not because diabetes is “no big deal”.

eat the cake

How do we change this? How do we balance getting people to understand the struggles while showing them that diabetes does not stand in the way of being who you want to be? That is yet another challenge but its a challenge that many with diabetes do daily with a strength and confidence that inspires us all. 

Psychic Connection?

The other night was night two of tossing and turning which in itself is not entirely unusual. This night was different though.  I was completely tired and ready to drop.

I had read a few pages of my book, done some relaxation exercises but sleep would not come.  After awhile anxiety began to creep in. I tossed and turned some more.  My mind began to take off on its own. There was no way to reel it back in.

I thought of my oldest son living up in Alberta.  Had he been injured at work? I would have heard if he had. I tried to shut my mind down again. I tossed and turned some more.  I thought of my youngest son. Was he testing at night? Was he in trouble? Had something happened? I again worked to calm myself down. Both boys, or someone around them, would have contacted me if there was a problem.  I was being foolish.  I was overtired. I had too much on the go. I had too much time on my hands.  There were a million reasons for me to be tossing and turning. Driving myself insane was in no way helping the situation. By 2am I finally fell asleep.

When I got up the next morning, I wondered if this had just been a reaction to so many years of interrupted sleep.  Was my body going through some sort of withdrawal? It has not slept through the night for any extended period in 20 years.  There was bound to be some issues at some point. I decided that I would try herbal tea with my book the next night.  All would be fine. My kids were still alive. No friends or family had been injured during the night. Obviously my anxiety was unwarranted. It was probably just my body being strange….and then I talked to my youngest son.

After a bit of chatter, I asked him how his readings were.  “Good except for last night. I was up all night because of a bad site.  I got it fixed though and was perfect during the day.” BINGO! There was the source of my anxiety!  He was in trouble the night before.  Well not trouble, but you know what I mean.

I have spent almost 14 years somehow waking to most diabetes related events. I would wake at unexplained times when he was low or high.  Something would bring me out of a deep sleep and make me test him.  We have no CGM.  I just somehow often “knew“.  Perhaps this knowing did not know distance?  I am not sure. Some people would say that I was crazy and this was just a coincidence.  It could be. I am not sure but I do know that I slept a little easier the next night.  Any tossing and turning  I experienced that night didn’t have a higher level of anxiety attached.  As long as my son is also waking and dealing with things…well I will probably always worry and be concerned but hopefully I will find a level of calm. If I don’t, I will text! psychic 

New Challenges

Someone asked me to continue to update my experience has a mother of a teen with diabetes who is living elsewhere.  Let me say its a bigger challenge than having him live here!

There are definitely growing pains.  As a mom, I miss having my sons around me. I actually do wake up during the night and feel lost because there is no one to test or check on. I would gladly teleport myself to some of you sleep deprived parents but unfortunately the only things that I really can do is roll over and hope he is okay where he is.

My son on the other hand seems to be loving not having Mom hover over him and what teen wouldn’t? The rules are very different for him now and he is enjoying it to the extreme I am sure.  A friend reminded me recently that even when children are away from their parents and thinking about doing a certain behavior, often Mom or Dad’s voice is still nagging in the back of their head and they may be a bit more cautious because “what if Mom/Dad found out? They would kill me!” I hope this is the case with my boys…well you know that they continue to have some common sense because its not like I would really “kill” them exactly…

Obviously with a mom who likes to be hands on and get things done and a 16 year old who is loving being away from that, there are challenges. Oh are there challenges!!  Bringing my expectations down to a reasonable level is very, very difficult and in part only done with the help of great friends.

While we do text daily I make sure that diabetes is not often the topic of conversation. We talk like, school and diabetes if he has an issue that needs to be dealt with right away. We have however agreed to sit down and chat about diabetes specifically once per week. We chose Wednesday nights.

The first week this worked perfectly.  He uploaded his pump. I looked at the data, formed my questions and was able to be calm by the time we talked. All worked out really well. The next week I had to be away on the Wednesday so we chatted Tuesday. There were a few more issues. We spoke of what to do when type situations arose. It went okay.  This week, well its been three weeks. The shine was going to wear off of things right?

Yesterday I sent him a message reminding him of our “date”.  I told him to upload his pump when he got home from school so that I wouldn’t keep him up late. Last time he had had computer issues and it took forever to even look at the data. When he got home he sent me a message telling me that the remote for his pump still didn’t work. What??? Had he called the support people? Of course not.  He was waiting for Mom to do this. Mom agreed.

I told him to call me after his supper and we would call pump support. I would keep him on one phone and call the support people on the other so that I could ask him whatever they asked me.  I ate my supper and waited…and I waited…and I waited. It turned out that heading out with a friend for the night was way more important than Mom or a pump issue.  At 11:30pm I told him to take pictures of the back of the pump and the remote, send me details and I would deal with it in the morning. We would also talk pump the next afternoon BEFORE he got busy with other things.

After a bit of troubleshooting on my part, I got his remote working again.  There is definitely an issue so I am waiting for pump support to return my call.

Balancing 16 year old freedom, Mom control and Mom letting go is definitely difficult.  This may be one of the biggest challenges I have faced in a very, very long time.  Its a good thing I have a great relationship with my hairdresser. I may need a lot of hair color to get me through!

A reminder to myself. I may need to post it on a wall somewhere.
A reminder to myself. I may need to post it on a wall somewhere.

Its Little Things

I made my first trip to Costco as an empty nester the other week. It was a bizzare experience when you factor in so many years of living with diabetes and children.

There were the normal things..the boxes of cereal that I don’t need because my boys are not here to eat it.  There was the flavored water that my youngest loved to drink that I don’t have to worry about buying until he comes to visit.  There were also the meats that were packaged into portions for two adults to eat rather than two adults and a ravenous teen or two.

Next came the diabetes things…buying items and not worrying what the carb count was.  Putting items away and not worrying about saving the nutritional information to be referred to later.

I can’t say that it felt good. It felt..well a little empty.  I have been shopping and cooking for a child for the past 20 years. I still chat with them each day.  We still FaceTime or Skype and call but not physically seeing them each day?  Not feeding them each day? Well its strange. I know my wallet will appreciate it but its a lot harder for the heart to get used to.

They will visit and old habits will quickly return. I will, and do stalk up on all of their favorite baked and bought goods for their arrival.  This is just another phase of life. It just takes a bit to get used to as well.

I still wake at night. I almost long to get up and test…almost.  Life changes. Children grow. Normally we have time to prepare.  Sometimes we don’t.  Either way we go on with our new roles and make the very best of them. I continue to be there for both of my children. I continue to teach my youngest son as much as I can about diabetes and provide him with as many supports as I can. Its strange how the little things impact you.data

 

 

A New Chapter

This is a post I have put off writing.  My life has taken a new turn. I have not been sure how much I would share and let alone where to start, where to end and how to collect my thoughts and feelings into something sensible. I still don’t.

At the end of August my world seemed to shatter.  It didn’t of course, it simply changed courses at a time when I was least expecting it. My youngest son broke the news to me that since he was about to turn 16, he felt that he was old enough to choose where to live and he wanted to exercise his right to make that choice. I have been divorced from my children’s father for a number of years and we now live hundreds of miles apart. My son wanted to go home.  He wanted to move nine hours away to live with his father and be near his life-long friends.

To say that I was hurt and upset would be an understatement. I came up with all of the reasons that this was a bad idea. He gave me all of the reasons that it wasn’t.

He said that he only had two more years and he could move out on his own anyway. I countered that these last two years were vital for me to help him, guide him and teach him how to handle his own care. This was to be our transition years. He countered that transitioning for two years while living with his father was an even better way to learn.  He does the bulk of his own care when he is with his father but if he got into trouble, Dad would still be a bit of a safety net. We continued to go back and forth on other issues like school, responsibility and learning to drive.

I told him that I would not allow it. I would not put his health or his education in jeopardy. I was hurt. I was upset. I cried more tears than I had in a long time. I contacted my lawyer. I reached out to friends and family.  I was soon reminded that this was not about me.  No matter how much I felt like a failure, my son was not moving because I was a terrible parent.  He was moving because he wanted the chance to be an adult. Saying no was saying no to my son and no one else. It would put a terrible strain on our relationship and serve no purpose that he would see. They were right so I cried some more and got to work.

I contacted my pump rep and got my son a new, in warranty insulin pump.  I contact our diabetes clinic and asked for his file to be moved back to our old doctor.  I bought school supplies, picked up new shoes and clothes and filled his prescriptions. I stayed up every hour that I could to spend it with him. I teased him a little about the things that he would miss out on  like bonding with our goldfish, fighting the dog for space on his bed, and lighting every candle in the house each evening. I told him that he could change his mind and stay. It wasn’t too late. He would laugh and say no.

His birthday would happen after he moved. We had an early birthday dinner.  We had an early cake. I gave him his presents early.  Inside of his card I gave him a list of things to remember, the first of course being how much I loved him, how proud I was of him, and that no matter what I knew that he was capable of caring for himself. He read my note. He smiled and put it away for later. The next day his father arrived, we loaded his belongings, I held him tight, we both cried (him a little, me a lot) and off he went.

As a stipulation of going, we arranged to discuss his readings every week. He was to upload his pump to the Diasend website and I would go in and see what was happening. This was one of the reasons for switching pumps–I could see boluses and blood tests from nine hours away. He also said that he would gladly Skype at 10pm when he had an assignment due the next day so that he could get my input. I really appreciated that –not, but reminded him that as I did with his brother, I would be in touch with the school and would be apprised of his marks and his progress.

Some people have asked what the big deal was? He was going to leave at one point anyway. I have to learn to let go. The big deal was one week to prepare myself when I thought I had two years…or more if he went on to trade school here. The big deal was he had not shown in the past an ability to take care of himself when away from me. It was as if I carried diabetes in my purse. If I wasn’t with him, he didn’t have diabetes and therefore did not need to test or do any of his care. I was scared of so many unknowns.

As a mother, I want to be there to protect my children–both of them.  I don’t want them hurt. Its my job to protect them. In the case of my youngest, that includes keeping him healthy and alive.  Now that I have had to hand his body over to him sooner, I feel like I have not completely done my job.  As I told him I know that he can do this. He has the knowledge and the ability but the desire is often lacking. Hopefully this experience will change that.  Perhaps now he will have that desire. Thankfully I have wonderful friends who continue to guide me and keep my expectations in check.

They have also helped me to find my way into this new chapter of my life as an empty-nester. Amongst many notes of support, a wise friend wrote…” A spectacularly difficult time for you Barb. But you have done everything you can to set him up for success. Now it’s up to him. Probably the hardest thing for all parents: letting go. Sending much love your way. You going through this will give you the experience to help other parents, whenever the time comes for them.”

So as Sandy wisely told me, I begin this new chapter in my life and in the life of Diabetes Advocacy–sharing with you the joys, fears, and realizations of parenting a young adult with diabetes from afar. It won’t be easy but parenting is never easy. Parenting a toddler, a pre-teen, a teen or a young adult with diabetes is even harder but we make it through with love, support and amazing family and friends.

letting go

 

The Magic Wand Worked

My son told me that magically, after months of not testing and pretending that his diabetes does not exist whenever he was away from me, he would change.  He would test. He would wake up in the middle of the night to test and treat. He would bolus without reminder. He would become in charge of his own diabetes care!

I was cynical.  I knew that he “could” do it but time and time again he had shown that he wouldn’t do it. The other night was our time to review his readings and settings. I waited for his pump to be uploaded.

As I looked over the data, I was pleasantly surprised.  There were a decent number of readings–a lot of them high but there was data to work with!  I looked at the past few days, the ones that reflected back to school readings. There were numbers missing.  There was only one overnight test.  There was no testing the entire time he was at school.  I reminded myself that there was to be no judgement. I had vowed not to ever freak out no matter what I saw.  He was to learn. This was to be a constructive process.

My son and I began to talk.  I asked about the missed readings.  He said that he had used a different meter. He was going to start using his Ping only from now on.  It was more convenient to have one device do everything rather than testing and then taking out his pump (hold on, wasn’t that what the rep and I had told him when we did the new pump training?).  He gave me the readings and I knew that he had really checked.  He never gives out of range readings if he is lying. He also would never fess up to missed checks if he was trying to get out of something.

I told him that I only saw one overnight. What had happened to testing during the night? He was instantly on the defensive. He swore he had tested! He had the glass in his room to prove it! He had been in range but on the low side so he had decided to add some juice. He had tested!! I laughed and said okay.  I reminded him to input the readings into the pump next time so that I could see them before we make any changes.

He relaxed and we walked through how to manually add readings. We also reviewed how to use temporary basal rates on the new pump when exercising.  Suddenly he cried out “OH NO!! We forgot to change to weekday basal rates!”

I laughed again. I knew the change had not been made…well I didn’t really expect him to suddenly remember that this had to be done manually after 10 years of having a pump do it for you.  I told him that was fine. He could change it right then and there. We would not do any alteration on his current patterns but he had to remember to switch back on the weekend.  He asked to be reminded. Hopefully between the two of us we will get in the swing of this.

As the conversation ended, I felt more at ease. Perhaps he is growing up.  He will stumble. I am sure he will have times that he forgets but he is showing himself that he can do this.  He is showing me that my teaching did not fall on deaf ears.  Thank heavens for the magic wand that got him on the ball..well at least for this week. magic-wand

Changing of Roles

Today is the first day of school.  My son is starting grade 11 in a new school.

For the first time since he has been in school, I will not be sending a diabetes information package to school. I will not be emailing each teacher and giving them a heads up on what to expect. This year, my son has decided that he needs to take charge of his life and his diabetes care.

I am nervous…this is a step up from the pure terror that racked my body when he first told me of his decision.

This school is not unfamiliar with diabetes.  They had a student a few years prior who had diabetes as well.  The community knows of his condition so it will not be something new for his fellow classmates.

I will not however, be going in and asking that they know about Glucagon or finding a person who will be trained to use it. I will not be taking each teacher aside and drilling into them as much information as possible.  I will not be sending my usual package of information.  This is all for my son to share. It is up to him what he says or does not say.

I am confident that my son “can” take care of himself.  I have been training him for years.  He has shown in the past that he can’t always be bothered to do this but he swears that a magic wand has been waved over him and he has changed. I don’t believe this but I have to let him try no matter what. This is the hardest part of being a parent. Its like watching them learn to walk all over again but this time you can’t pad the furniture and make sure that they land on carpet.  You can only watch, pray, and hope for the best.

I will contact the school and remind them of my contact information. I will tell them that if they have any further questions about anything including diabetes that I am available.  That will be where it starts and ends.

Young adulthood arrived in our lives sooner than expected.  Its now time to adjust to the new roles and be there when I am needed only.This is going to be a tough road! first steps

Does Diabetes Taint my Memories?

The past month or so I have had the privilege of enjoying the company of many small people.  I have been able to cuddle and play with the children and grandchildren of friends.  It has taken me back to when my own children were small and often leaves me wondering where the time went? It seems like just yesterday that my boys were small and playing in wading pools. Now my oldest is living on his own at the other end of the country and my “baby” is getting ready to celebrate his 16th birthday.

As I thought back in time, I realized how much diabetes taints my memories of my youngest son.  I know it is to be expected. He was diagnosed when he was 2 years old.  Most of his life has been lived with diabetes but do all of my memories have to be colored by that?

I remember him talking about “cow-bow-hydrates” before he knew his ABC’s and  the pride mixed with sadness when he tested himself for the first time.  I remember driving across Canada, waiting in infamous summer construction for what seemed to be an hour, and as soon as the pilot car said we could go, my son had to use the washroom…NOW!  Had diabetes perforated every memory? Did it cloud and skew my memories of his entire childhood? Surely I could remember things that didn’t have to do with diabetes–couldn’t I?

I began to panic and wonder. Had I allowed this disease state to mess with my son’s childhood? Was I a terrible mother who allowed diabetes to overtake our lives? I thought I wasn’t. I tried to keep the D-monster as low key as possible.  I tried to keep my advocacy and public life separate from my children’s lives.  Did I succeed? I guess my children will be the only one who can tell me that for sure but in the meantime, what about my memories? Could I remember my son’s antics without diabetes?

Yes!! There was the time that he decided to sing “Tip Toe Through the Tulips” for an end of the year school concert.  He sat on that stage alone with his ukulele and sang in that falsetto tone.  We laughed and were amazed that this shy child would do something so silly!

There were the many conversations between my sons which became a good-natured battle of wills and my youngest always won.  There were movie scenes that the two boys would recite out of nowhere that left me shaking my head and wondering how they could remember all of that dialogue! Of course our fishing trip in Western Canada last year saw my laugh at him catching his first salmon and then fuss about the blood that was splattering on his clean white hoodie.

Yes, diabetes is present in a lot of memories but it hasn’t clouded all of them. It is not all that I remember when I look back on my son’s childhood.  His personality and unique charm shine through despite living with his horrible disease. Thank goodness!

tinytim