Category Archives: letting go of diabetes care

Another Corner Turned

The weekly bg reading review that I had dictated in September has long gone by the wayside. I occasionally ask about readings on the phone or over text conversations but I try to keep it to a minimal.  If my son gets into real trouble, he calls or texts me with his SOS.  Diabetes care is remaining in the periphery of our relationship as he strives to make it on his own. We still talk about care and I still like to know what is going on but I think I truly have turned a corner in my new role and acceptance of it.

A couple of weeks ago, I suggested that we have a phone conversation about his readings in the coming days.  My son told me that he had an upcoming appointment with his CDE.  I then suggested that we wait until after the appointment and then we could discuss what was or wasn’t done and see how we felt about it.

My son thought that was a great idea and we set our new date to chat.  Last week that day arrived.  I knew that my son’s readings had been uploaded by his educator (my son has managed to lose two cables for his pump and I feel bad contacting our rep for a third one). I went online to see what the readings looked like.

As I opened the screen I laughed and laughed.  There were a lot of boluses and insulin cartridge fills but I only saw two readings. I laughed some more! For a change, it was not me who got to look at no data and try to sort things out. It wasn’t me to go…”What gives?” only to be told that he had used other meters but didn’t have them with him. This was not my problem.  I laughed some more
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It felt good to have that burden lifted. Whether there were or were not readings, I was not the one who would bang their head in frustration and begin the tedious task of trying to track down information. The smile remained on my face.

Later that evening I called my son and we discussed his appointment.  It had gone well. He had readings on a different meter and the two of them had discussed the area my son knew was a problem.  My son was pleased that he wasn’t told what to do but asked his opinion on the problem.  Suggestions were made by both parties and my son left happy.

Mom wasn’t needed.  For a change, that felt okay.  My son was happy. He had made his own decisions. He had been able to talk to someone about his care and share his knowledge. It was a win-win situation as far as I could tell.

I will still call and talk readings. I will still be here to troubleshoot and to cheer from the sidelines but my son really is taking charge. He can do this. I always knew he could but the fact that he is doing it makes me feel a bit better…well for today anyway.
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Do not clean with soap and water

Today my phone went in for a cleaning. It wasn’t supposed to be cleaned but somehow it stayed in my pocket when the item I had been wearing before my shower went in to be washed.  Something told me to check my pockets before tossing it in soap and water but in my morning fog I forgot.  A little while later, in a bit more of a panic, I checked the now wet pockets. Nothing in the first pocket! Perhaps I was safe.  I checked the submerged pocket…it was heavy.  That could be water weighing it down…Or it could be my phone.  Crap!

I began drying my phone, watching the screen flicker, wondering what I will have lost this time since I hadn’t backed it up, and finally pulling the battery and sticking it in a bag of rice.
I am not sure if my phone will survive. Part of me says, “Yes it will! I caught it early. There wasn’t much dampness in it. It will be fine!” Another part says, “Dude you are screwed! There was some sort of red dye that I wiped off when I was drying it. I am guessing that is one of those markers that tell manufacturers that it was submerged. This is not good. ”

Yes, I wanted a new phone. My phone has been acting weird and basically annoying me for months but I want the latest iPhone. I don’t want the current version when a new one will be out a few months after this one. I don’t want to pay for a phone this month that in two months will be free because it is now the older generation.

I won’t get ahead of myself. For now, I remain phone-less for at least the next 24 hours. That feels weird. I have had a cell phone for 14 years now.  It was an essential part of our life with diabetes. It allowed me to be away from home and still in reach of my children or any adult supervising my children. It allowed teachers to call and ask me a question whether I was at home or in a meeting or grocery shopping.

As we learned to text, it allowed my youngest son to send me messages about bg levels or issues he was having when he was away from me.  It allowed me to keep track of what was going on with his diabetes care no matter where either of us were.

Being phone-less means that I can’t do any of these things…at least not as easily.  Previously this situation would have thrown me into complete chaos.  While I am going through personal withdrawals because I like to text someone when I am thinking of them, it is not the catastrophe that I would have once thought it was.

There is a land line that people can reach me on if a life threatening issue arises. I have access to email and online accounts if someone needs to reach out.  I may not answer these questions while I am shopping or running errands but I will get to them at one point.
I am not panicked because my kids cannot immediately call or text.  They can still contact me. They can take care of most issues on their own…even the diabetes related ones.  That is scary! It’s not scary that they can handle things, its scary that I have reached a point that I know that they can! They are not just growing up but I am learning to let them fly!  

It still feels very weird not having my phone (and it has only been two hours!) but it is equally wonderful to know that my kids are okay on their own.  I no longer have to be there to walk them through emergency site changes or trouble shoot a high. My youngest has got this…most of the time and for those other times, well, we will talk about it when we get the chance. 
wet phone

Back Away from the Pump. Its NOT your toy

At the end of August, my son got a new pump. We had been lovers of the Cozmo pump for over 10 years.  It physically hurt to have to put it away but with no warranty and a child living hundreds of miles away, it seemed best to make sure that he had a pump with a company still behind it if he had any issues.
 
We both shed a few tears as we put his beloved “Lean Green Pumping Machine” in a box and brought out his new pump.  When we sat down with his pump trainer, the trainer dealt with my son. Mom stayed in the background.  The trainer talked to him when going through how it worked. My son is too big for me to hover over his shoulder so again, I just sat back and let him learn. It felt a little strange.
 
After she left, he let me touch the remote bolus and test drive it a bit.  Soon though, it was hands off. I could touch it at night if he was out of range but that was it. I had not other reason to use it. If there was a change to be made, he did it. If there was a site change to be done, he did it.
 
As time went on, I used the pump less and less and I began to put it out of my mind. This was not my new toy to check out. It was his.  When we had a problem, I grabbed the manual to help him figure out where to go but again, I checked a book while he was six steps ahead of me navigating through the pump screen itself.
 
It has been five and a half months since my son started on his new pump and now I can barely figure out how to bolus him with it. On the other hand, he has no problem making corrections, adjustments or anything else required.
 
A few weeks ago, a friend and I were talking about new pumps for our kids. Her child is also holding strong to her Cozmo but they know that a new pump needs to happen sooner rather than later. I casually told the mother not to be concerned about the pump that her child goes on next because she won’t be playing with it. It will be her child’s pump and Mom doesn’t need to know how to operate it.
 
She thanked me.  We have been so used to handling everything, checking out each device, and learning on an ongoing basis that as parents, we can forget that this isn’t our disease. When our children were 2, 3 or 5, this was our disease no matter what anyone else said. Now that our children are 16, 17 or 20 we have very little input.  We have been relegated to the sidelines whether we wanted to be or not.  We can make suggestions. We can nag a little but our children are now young adults who will do what they feel is best. The only thing we can now hope for is that some of what we have taught them along the way has found a home in their own thought processes. It’s a huge step but we can all do this with one foot in front of the other…and back away from the pump. 
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Another Day, Another Feather Left Behind

The tree is down.  The Christmas decorations are put away for another year.  The house is a little bit more quiet now without the steady banter of two young men and the constant opening of the fridge.  My children were home for a week and it still surprises me how much I miss them when they are gone.
 
In one week I crammed in as much mom stuff as I could.  There was providing them with food that they love, doing their laundry and sitting around enjoying conversations.  We watched the latest Hobbit movie together and all huddled around watching to see our cousin’s name in the credits.
 
There was the other stuff that moms take care of too like a stop at the bank to fix issues on both children’s bank accounts.  There was a call to a meter company to replace the iBGstar that my son refuses to part with even though the display was not working properly. There was also the purchase of the small things needed to make life run just a little smoother that only Mom would think of.
 
It was a busy week.  We quickly fell into the routine of Mom doing more testing and helping with carb counts.  I later wondered if I should have offered to do everything for one day to give my son a complete break. I realized quickly that the idea would not possibly work given his current eating habits. He eats 24/7. I would not be able to keep up. It was much easier to offer carb counts and test while he slept in.
 
Despite delays caused by Mother Nature, my boys have returned to their other home.  They are slowly getting back into their routine and I am slowly returning to mine.  I still smile however when I see those loose “feathers” in the strangest places.  There is a test strip on the floor in my office where they spent hours catching up on the latest season of Sons of Anarchy.  There is a piece of an infusion set sitting on a table in the living room. How it managed to end up there is beyond me but there is sits waiting to be used…or find a garbage can.
 
My new role in my son’s life still leaves me feeling off balance and unsure at times. I continue worry and sometimes feel guilty because I no longer have to think about diabetes 24/7.  That is how life goes.  We teach our children and then one day have to step back and pray that they have absorbed some of what we have given them…and remember that we are their for them when the stumble or just need a shoulder to lean on. 
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Back in the Saddle

Diabetes moved away September first of last year.  Sadly this also means that my son did as well. It has been a struggle for me. I have had to adjust to a new role and honestly, I am not always sure what exactly that role is.  I am a hands on Mom and being a mom from a distance has always been a challenge but with a soon to be 20-year-old living in another province, I am slowly learning.
 
With the Christmas holidays, I got to be a hands on mom again! It was wonderful to have both of my boys with me. There was baking to eat, meals to prepare and even the odd bit of chauffeuring to be done. It was great.
 
There was also reminding about bg checks, counting carbs and doing site changes.  Diabetes was back as well. I was worried that I wouldn’t wake up for night-time tests but I did with no problem.  I would easily wake numerous times during the night and get up and check on my youngest son. I knew that he most likely was not testing a lot during the nights on his own so I decided to help him out. I woke every 2-4 hours and tested to give us some great data to look at.
 
Since my son was here, there was no need for a Wednesday night phone call or waiting for him to upload data.  I have a cable here, as well as his pump and meter.  We could sit down together and discuss the many highs because of the constant eating.  We could talk about basal versus bolus and see what may or may not need tweaking.
 
With each night test and each dead test strip, I felt grateful.  It seemed weird to walk into his room and test, knowing how many nights I hated doing just that.  This time it was a privilege. I was helping my son. I was giving him a break and keeping him safe while he was under my roof. I wondered if his wife will one day help him this way? I have no idea. He told me that he has a girlfriend now. I wonder what she knows about his care? Knowing how private my son is, I am guessing that she knows next to nothing. That’s okay for now.  When she is important to his life and worthy of his deeper affection, she will learn.
 
Until then, I will test him at night when he is with me. I will be surprised how quickly we both fall back into old routines. I will remain amazed how quickly time flies and how much my children have matured. I will be grateful for the ability and the opportunity to help my son if only in small ways now. IMG_0164

It’s Not My Disease?

We are constantly told as parents of children with diabetes to remember that this is not our disease.  When you are dealing with a toddler or a small child, it is really difficult to take this advice to heart.  A two year old cannot grasp what is going on in their bodies. It is Mom and Dad’s burden.  The challenge as parents, is to realize that while it was our burden, our children’s diabetes is not our disease.
 
Last week my son was having technical difficulties uploading his pump.  After many messages and much frustration on my part, I finally decided to ignore our weekly diabetes education session for a bit. I began to wonder if my son was on overload.  He had been to two different diabetes educators in a matter of weeks and had Mom calling him to discuss what was going on.
 
I began to think about taking a total break. Maybe I should just be letting the “experts” handle this. Perhaps it was time for Mom to just step away.  I was finding myself frustrated and angered when I wasn’t seeing enough data to make educated guesses about my son’s care.  Things were building up and I wondered if I was better just walking away for a bit. I began to think that he would have more peace and learn more if I just let it all be.
 
As my emotions churned and became more negative, I was hit by a thought. It literally felt like I was hit in the side of the head with a 2×4.  The  weight of this realization made me sit down and shake my head and wonder why it took me so long to “get it”.  I did not need all of that information.  The person who needed it had it–my son! My job was to ask him the right questions. My job was to guide him towards the answers but let him find his own solutions.
 
With that realization, a huge weight lifted off of my shoulders. I was no longer carrying the burden of an impossible task. I was now sharing, teaching, and supporting–doing my job as a parent.  It felt wonderful!
 
When I picked up the phone and began talking to my son, I asked him if he had the pump program open.  He was shocked.  Why did he need it? I suggested that he might want to see it so he could decide what needed to be done.
 
We then discussed the areas that he felt needed to be changed. I asked him what needed to be tweaked, a basal or a bolus ratio.  He said his carb to insulin ratio was perfect.  I asked him why.  ”Because the dietitian said so.”  I laughed and said that he needed to say so! We went through a process of establishing if she was right.  The next step was to decide when to make the change.  I pulled out my John Walsh book and quoted to him how to change a basal rate.  He then made the decision of when and how much of a change he would make.
 
I was proud of him.  I was proud of me.  We were both learning.  He was being empowered and it gave me a huge sense of relief.  This really is his disease. It my job to help him, encourage him and be there to help but at the end of the day only he can test, bolus and adjust. Its all up to him.
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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.

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My Diabetes Vacation

I’m back!!! Hopefully you enjoyed the stroll down memory lane while I was taking in the amazing beauty and history of Ireland. 



This trip was incredible for many reasons.  Obviously being in a country that is oozing history out of every pore was a dream come true for me. I love history. I spent a few years in university studying British history and this trip brought me back to a subject that I have always enjoyed. 



Another reason for it being incredible? I left Diabetes behind.  This was the very first time in twelve and a half years that Diabetes moved to the very, very back of the bus.  I kept in touch with my son about once per day.  Our conversations occasionally contained “What are your readings like?”  with his usual “Good” response. The amazing thing is that I never said “Good is not a number.  What is your reading?”. 


I began the trip in my usual style. “Don’t forget to reduce your overnight basal.  You were really active today.”  
“Do we need to adjust that time we talked about or do you think the rates are okay?”


After a few days of enjoying the sights of Dublin and taking in a few local pubs, our conversations became more of “How’s it going?”  and “What did you do today?” with only a small smattering of “How are your readings? Do we need to make any changes?” 

“The Brazen Head” The oldest pub in Dublin!



I have read that parents need to take a vacation away from diabetes. I have always felt it was important for my son to get any break he could now and then by me taking over bolusing, site changes, etc.  I often wish that I could do this for many others living with diabetes–give them a break when they have no one around who can.  I have never been able to give myself a vacation however. 


I am a mother. I worry. I wake up in the middle of the night prepared to test whether my son is with me or not. I look at meals and count the carbs.  I search for a meter two hours after a meal thinking that someone should be testing.  


On this trip, I still woke up in the middle of the night. I still wondered how my son’s readings were going but it was not my most pressing concern. Getting up at 6am, being ready for the bus, figuring out where our next stop would be, how I would fit everything into our luggage and where the best Irish coffee was made moved to the forefront of my brain.  I never looked for a carb count until I ate a cookie on the final plane ride home.  

This picture was right side up but after a few coffee…



I will go through my son’s pump and meter with a fine tooth comb when he comes home but while I was away?  It was something that I would deal with later. 




So my advice to all the parents out there? When your child goes to camp, spends a week with Grandma or goes away with their other parent for a period of time–ENJOY! Let go.  If only once.  Take your own vacation.  You have earned it.  As others told me, you have taught your child well so let them fly a little on their own. You are still there to fix any scrapes but the break will do you both good…speaking from experience!  

One Thing to Improve

Today’s prompt asks  us to come up with one thing that you could improve on…and maybe start today!
One thing? That is so hard to narrow down.  I think that there are a lot of things that I could improve on.
I could be a better advocate.  I could be dedicating more hours each day to the task and working harder to see more successes.
I could put even more hours into my website and blog.  I would keep things even more updated and spectacular than they are now.  Links would be fresh and new. Articles would be engaging and I would catch the attention of more advertisers allowing me the financial resources to fully devote myself to these first two shortfalls.
More realistically the biggest thing I that I think I need to improve on is my son’s diabetes care.  I find it terribly difficult to balance between being on his case all of the time, monitoring, logging, trending, and tweaking versus allowing him the freedom to do his own thing and make his own mistakes.
I am trying to let him fall on his own more often.  I try to look at readings once a week and then calmly discuss them. I try not to completely freak when readings are not there that should be.  I make him count his own carbs most days and discuss his results compared to mine.
I still don’t worry about him testing at night. That remains my job.  I still look for the best technology for him. His only interest in technology is getting an iPhone or the latest game for his Xbox–although he does appreciate a good meter!
When he makes mistakes, I take them to heart. I get upset because I feel that I have failed more than him.  I need to let that go.  Its hard. Its hard to watch our children stumble at any time. Perhaps we could have taught them better. Perhaps….
I have to learn to let go and then accept what happens and allow both of us to learn from it. It will come…one day.