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

She Kicked Me Out!

Yesterday we had our regular clinic appointment…a day dreaded by mother and son for none of the obvious reasons.  We simply find it rather boring.  Because Mom is a bit obsessed, learns a lot, and surrounds herself with diabetes experts, diabetes clinics rarely have much new information to offer us. I also make it my job to educate my son so again, he is not often shown anything that he hasn’t already heard about. I will say that the people at the clinic are pretty respectful of this but we still must wait to see the required list of people…and we are easily bored. 

Yesterday was no exception…except when the doctor came in.  She asked my son his age and then asked me to leave the room! Wow! I have never been kicked out before! Well from kindergarten but not a doctor’s appointment!  

I know that he needs to learn to speak for himself and to communicate with his diabetes team.  He needs to know his rates and we are working to get him to understand where to make changes and how….BUT my son is super quiet! Don’t get me wrong, once he knows you and is comfortable it is impossible to keep him quiet but for the most part he is very reserved and mumbles one word answers. How was this going to work? 

I paced the floor outside of the examining room.  The support staff looked at me and said “Kicked out, huh?”  I smiled and nodded.  This was obviously a common practice.  As I paced, and worried that she would get no information out of him. I realized how important this was.  He needed to speak up on his own now before he reaches 18 and sees a new doctor.  I try to make him answer questions when we see his team but often he defers to me.  This one on one session would make him answer the questions. 

It seemed like I was wearing a hole in the floor. What were they talking about? Were they getting to talks of sex, drugs, alcohol and diabetes? That would be good…not that I want my son engaging in any of those activities, especially at his young age, but I don’t know enough about them to talk to them from a diabetes angle. 

Finally he came to door and beckoned me back in.  I tried not to be too obvious in my relief.  As I sat down, she turned to me for all of the basic information that my son could not provide…basal rates, carb to insulin rates, etc.  For some reason under the pressure of having to do it with a relatively new doctor in his presence, he had forgotten where to find the relevant details. 

I gave her the information she wanted.  She signed our DTC form without a second glance and refilled a prescription she had given my son during his last visit.  After she left, while waiting to see the other members of the team, my son expressed his approval of this doctor. Not only was she a nice person (and she is a nice looking lady which I am sure is not lost on a 15 year old male), she also told him that since he had great control he could forgo having his annual blood work.  She was a star in his eyes! I hope he realized that it was the hard work of maintaining good blood glucose control that allowed her to give him that reprieve. Either way…my little boy is growing up! Where has the time gone? I am guessing I will be kicked out on a regular basis now…. 

New Mantra

Its that time of the year again…the time when I begin to stress because my son will be gone for two weeks and I will not be monitoring his care.  I thought this year would be better. He had been great about testing and bolusing. He still was terrible at changing sites but there was hope! Or so I thought…

I went through his meter the other day.  All of those times that I had asked him to test? He didn’t.  I didn’t scream. I didn’t explode. I did remind him that he was coming exceptionally close to losing privileged…like his beloved XBox but I was pretty calm on the outside. 

Inside I was a raving lunatic! Was he going to test at all while he was away? Would he care for himself at all when he had to? Will he ever get it? When will he understand that this is not about Mom harping on once again, its about his health and his LIFE!  

Not only are we days away from when my son will head off to spend time with his dad and family, but I am going away on vacation at the same time…to another continent! 

I have been given a once in a lifetime, all expense trip to Ireland for a week. Diabetes, worries, and children are not about to hold me back but…well I will still worry (in between stops at pubs, castles and walks through the countryside!) 

I have contacted my cell phone carrier and set up my phone for use while I am away.  I have some texting abilities and a few minutes of calling in case some one has died and they want to call me but have extended use of my Blackberry Messenger.  This will allow me to keep in touch with both children but trouble shoot more when it comes to my youngest son.  

I told my boys this news and my youngest son said that I really didn’t have to worry. When he goes away he tends to forget his phone more than he remembers it.  He heads out for the day and leave it behind in his shed. I really shouldn’t be concerned because he probably will not be around to get my messages.  That did not go over well! 

I suggested that he remember his phone. He answer my messages and most importantly…take care of himself while I am away! 

I will not worry.  I will relax and enjoy a new country.

I will not worry. I will relax and enjoy a new country.

I will not worry.  I will relax and enjoy a new country.

Yes this is my new mantra!  I know I will be fine. I know I will do my very best when my son comes home to focus on the fact that he enjoyed his time away.  I will bite my tongue when I look at his meter. I will smile and praise the things he did right. I will breath and look for a glass of the imported liquor for the times that he failed. Ideally, I will not be an alcoholic. I will be a proud momma who also had a great vacation! 

The Fair and The Eye Roll

It was once again time for my youngest son to join his peers and do their annual end of the year trip to the fair…in the rain! At the end of each school year group of kids that he knows get together, head off to the local fair grounds, eat, go and rides and have fun for as long as their bodies can handle it. 

Last year I was a little freaked. I didn’t know the kids that well. My son was alone in a city! We had previously lived in a rural setting for all of his life.  He is  terribly private about his diabetes and I worried how well he would manage himself with friends around.

Somehow a year has passed and once again my son informed me that his group of pals were heading out to the fair again.  They were meeting at a friend’s house at 4:30pm.  I didn’t expect them to be finished until late that night. I was right.

Before he left the house, we went through the list…
Glucometer? Check.
Test strips?  Check.
Lancet? Check.
Glucose tablets? Check. Hold on, let me fill those for you…followed by “Mom” and an eye roll.
Cell phone? Check.

As we got into the car he also looked for the most important thing…cash! He was good to go.

We arrived at his friend’s house and as he was leaving the car I was yelling out instructions.  He had closed the door and I was rolling down the window….”Don’t forget to set a lower temporary basal! You will be doing a lot of walking.” 

Again, with the eye roll as he hurried to the door hoping to get inside and away from my hovering sooner rather than later.

When he got home we went over his testing.  “What do you mean you only tested three time?”

“Mom, I wasn’t gone that long.”

“You were gone seven hours!”

“Yeah, Mom, that is one test every two hours AND I tested before I did any major walking. I didn’t eat and I was okay.”

I couldn’t argue. He was right. Testing every two hours is something that I really can’t complain about.  The fact that he stayed out and had fun? Well that is the absolute most important part but it is still hard to let go…even if he seems to be doing okay when he has to.

Active not sitting all day!

My youngest son had the opportunity to head out on the trails and enjoy a ride on his quad the other evening. He was with a responsible adult but “momma panic” still danced around the edges of my mind.  The person he was with knows that my son has diabetes but knows nothing about the testing, etc that we go through.  My son is old enough and responsible enough to handle these things. I had reminded him to have glucose and his meter with him. I know that he would bring them…not necessarily use them, but he would have them with him.

I had to have faith. He had been fine for a week when I had to go away unexpectedly. He survives each time he goes away on his own. He had been on a quad trip the previous weekend without his mother hovering and asking him if he had everything and he had done fine.  He would be okay.

Just in case, I texted him a few reminders…
“Don’t forget your meter and glucose”
“R u ok?”
“Set a reduced temporary basal”

It was the last text that created an entirely new level of stress for me.  After him being gone for a few hours, my son called me. They were taking a break and the person he was with was making a call so he decided to check in with me (brownie point for the kid!).  I asked him if he had set the temporary basal. He said yes, he had put on his travel basal.

WHAT!?!?  That means MORE insulin.  That is for the times when he is sitting in a car or on a plane for hours on end. It is not meant for days when he will be active, throwing his body around and pulling a machine out of mud. I could feel panic rising in my throat.  

I tried to breathe as I told him to go in and stop it. He couldn’t figure out how to do it!  I continued to try to breathe as I tried to offer options over the phone. I finally headed to find his old pump.  Perhaps the settings would still be the same and I could work it out while he was on the phone. In desperation I told him to shut down the pump and power it back up. It might then give us the option of stopping the temporary basal. It turns out that when you ask it to “stop delivery”, the pump asks if you mean the entire pump or just the temporary basal. Victory! He hit turned off the higher basal and reset it with the lower rate. He was now good to go. Thank heavens!!

I worked on breathing again not daring to allow my mind to think about the “what ifs”.  My son continued to enjoy his day of mud and fun.  Just another day in the life of a teen with diabetes! 

Growing up, independence and Mother’s fears.

Time moves so quickly. It can feel so slow when you ask your son for the twentieth time if he has changed his site and he hasn’t.  You wonder if it will ever change. Will he ever get it? Will he remember to test? He will not live with me forever no matter what.  How will he continue? Will any of it sink in? How will he handle things? What will he do when he needs a break?

I am a worrier and the thoughts going through my head lately will soon drive me over the edge if I am not careful.  Preparing for my oldest son’s graduation from high school and realizing that he is on the verge of manhood, is sending my mind reeling.  My children are growing up! Have I prepared them well enough? What else can I do for my youngest? How will I handle their independence? It will not be easy but I suppose I will adjust.

When I look at my son’s log book I wonder. When I see how well he pays attention to site change reminders…five days later, fear takes over.  How will he handle this for the rest of his life?

I then listen to him react as I ask “Where are the tests? Why did you not test for this food? Why did you not check after that low?”.  My questions are no longer asked in panic mode.  I no longer ask in that hysterical, meltdown voice.  I simply ask the questions and wait. 

His answers are now more interesting. “Mom, my new year’s resolution is to test more. I can’t believe that I am missing these tests. I can’t do that. I have to do better. I will definitely be working on this.”

I know, you are thinking, yes he is saying everything he feels that I want to hear. You may be right but I have also watched the actions. I no longer “freak out” as often over his care mistakes.  I think a lot. I wonder what else I can do but I give him facts. We look at trends together and decide what needs to be done.

“Why where you high? Oh you made a bolus mistake. No problem. Now you know for next time.” 
“Where did that low come from? Right! Exercise, okay we will work on that one but where is the retest? Oh there it is.”

He is learning. The process is so painfully slow that I still fear him leaving my house.  The rational part of me says that I allow him to do a lot of his care without my hovering now.  He is left to go places and must face the world on his own.  He comes back alive and well. We still have another three plus years at least to learn, stumble, fall and brush off his knees. He has learned a lot in the past few years, he will continue to learn. We will be okay…I pray!

The Water park

After finally figuring out how to bolus for food in the US, we headed north once again.  The final stop on our journey was my mom’s to pick up our dogs and visit with family.  My parents were back from their trip to Alberta and my brother and his family had dropped in during their own cross-Canada adventure.

As we got closer to my mom’s, my brother began texting me…
“I am at the grocery store.  Will you be here for supper?”
Unfortunately we still had eight hours to travel so I had to tell him no.  A few hours later I received another text….
“I am at the grocery store.  Will you be here for bedtime snack?”
Bedtime snack? Does he live in the grocery store? No snacks for us.  We were still too far away and would have to get a hotel one last time before we arrived.  Because I was driving at this point, my son began texting my brother back. We decided to meet for breakfast the next morning.  My brother then asked my son if he wanted to go to the water park with them the next day.

I really wanted him to go.  My brother lives on the other side of the country and we don’t get to see each other very often. He is my son’s namesake and it would be great for him to spend the day with his young cousins.

I was terrified of him going.  Who would watch his pump? Who would remind him to test? My brother really hasn’t been around him enough to know a lot about diabetes.  He knows its a big deal but…my mind continued along this track with the “let your son be a kid first” blaring over top of the insanity.

My son was going. They would head out after breakfast. I had an hour to prep my brother between bites of food. I had a night to prep my son.  They had to remember to test.  The pump had to be put in a locker if everyone was in the water (its water-proof but with all of the cracks that he has in it, I knew it would not be able to handle water anymore).  He had to use the “disconnect” feature. He had to bolus for the missed insulin.  He had to have fun but he had to test. 

The next day arrived. I ran over things with my son. I gave him money for a locker. I talked to my brother. His girlfriend didn’t plan on being in the water. She would watch the pump and the meter.  I tried to breathe. I let my son head off and tried to remember that he was going to be a kid with his uncle. He was going to be fine and any errors could be corrected when they returned.

A few hours later I received a text from my brother…
“Just finished at the water park, getting pizza, L### took his insulin an hour or so ago.  I think it said 11.9?”

I laughed a little. I breathed a lot easier.  First, my son was testing.  Second my brother got it.  He may not have the terms right but he had confidence in his nephew and was still keeping on top of things. I could relax and deal with the rest of my day knowing that they had everything under control. 

We all met up a few hours later.  They had enjoyed water slides, pizza and even chocolate.  The only problem that my son had all day was that I missed his shoulders with the sunscreen and he was burnt.  I will try to do better next time!

Another concert attended, another diabetes victory

My son recently attended his second outdoor concert.  If you remember, a couple of years ago we attended an AC/DC concert that was held in a large field. At that time I was fully of trepidation.  I could picture a high that required us to find a washroom at the same time as the band came on stage. I imagined lows that would see us stuck in a crowd and unable to get to more glucose.  Thankfully all went fine. I had a huge bag filled with water and glucose, my back was killing me by the end of the night but there were no major crisis to worry about!

This year, my boys were going crazy counting down until the latest outdoor event.  It was a Kiss concert and they had convinced their father to buy tickets for it back in December! As the day approached, all of the same old worries came flooding back to me ten fold. Would my son remember to carry everything with him? Would he pack extra insulin and sites? He was going to be five hours from his father’s house. Would his cell phone work and allow him to call me if there was a problem?

In my defence, I did not worry as much as I normally would.  These things did go through my mind.  I did go over all of these things with my son so he would be prepared. We discussed temporary rates for the times of walking the concert grounds and sitting in the car going to and from the venue. He knew what he had to do and was confident in his own abilities.  I told him that he didn’t have to call me on the day of the concert. I would let him enjoy and trust that he had it under control–but if he wanted to text me that would be okay too!

He didn’t text.  He didn’t call. I was in constant contact with his brother getting regular updates on their arrival times and who was playing on stage at any given time, but I did not mention my youngest son.  I prayed all was okay. I waited until Sunday to hear about the concert and how his care had gone. And I waited. And waited.

The boys had not returned home until the wee hours of the morning on Sunday so I expected to hear from the min the afternoon.  Again, my oldest touched base and I knew that they were alive.  Eventually he told me that his brother’s phone had once again had the biscuit. Ugh! I told him to remind his younger sibling that his father’s land line still worked. 

A few hours later I heard from my youngest son. He was laughing and carrying on with a friend.  He had taken his phone on a walk with him and decided to see if it would work.  He was surprised to hear me answer the phone.  His phone was alive once again!

We discussed the concert. It was the second best he had ever seen and definitely the worst.  He had only been to two concerts but was not overly impressed with this one. It rained and the bands were not what he had expected.  Nonetheless, he had survived. He claimed that his readings had been good despite a site that fell out.  Because he was traipsing through the woods when he called, he didn’t have his meter handy.  He swore it was only a three minute walk away though. 

He promised to call today with the low down on the numbers.  Only a few more days and he will be home but so far its looking like my little boy is growing up.  Testing…most of the time. Bolusing…most of the time. Dealing with highs, lows and calling to make adjustments.  I guess there is some hope after all!

Summer Vacation brings Mommy Anxiety levels to a new high

School is officially over and my nerves are already staring to fray.  Despite a very slow start to summer (as in I am still waiting for it to truly arrive!), my son’s insulin needs have managed to plunge dramatically. I have adjusted carb to insulin ratios and numerous basal rates over the past few weeks to no avail. 

I have been religiously pouring over log sheets trying to establish patterns and set rates. I have tried to guess future activity levels and needs. Despite my valiant efforts, I am failing miserably. 

Tomorrow my son will be heading off for the first official leg of his summer vacation–a few weeks with his father and brother. I am verging on pure panic and trying to appease myself knowing that there always seems to be a guardian angel watching over him when he is away.

I have a book that I will be carrying around and we will set up times to call when he can give me his readings. I know he will not be pleased to do this but 5am lows followed by mid-afternoon highs and early evening crashes are going to be the death of me otherwise. 
I try to make sure that he is running high before he goes away.  The reasoning behind this is two fold.  One, I know he tends to be on the go more and eating less when he is away.  I also know that he tests less and forgets more when Mom is out of sight.  I would rather him run high and be off in the woods playing with friends than be low and get himself in trouble in the same situation. At the moment, I am not sure that I have accomplished this. I will be doing a bit more tweaking today and then saying a lot of prayers!

Technically this will be my two weeks off. I will be able to sleep through the night but I won’t.  I will worry that he is not checking himself and all of the worst things that could happen. He has a deal with his father where by they alternate for night testing. Its probably a good thing but it still makes me nervous as neither have been very good at retesting after a late night low. I also know, as many people have told me in the past, when Mom isn’t there to act as his safety net, he will (and does) step up to the plate more.
So as of tomorrow night I will have to shelve my worries. I have to remind myself that he is going to have fun and catch up with family and old friends. I will text.  I will call. He will eventually answer. I will be counting the days until he comes home and he will be counting the days until he goes back. All I can do is pray a lot, keep my concerns to myself, and hope that all I have taught him is starting to sink in and that he will surprise me with his care while he is gone!

I think he’s growing up

This morning I watched my son head off to school.  Gone were the days of baggy tshirts and the orphan look.  He is now a young man with his hair just so and tshirts showing off his new developing body.  I know that puberty has arrived because of the nightmare roller coaster of blood glucose levels we are riding on.  I know he is growing because I now look him in the eyes where he once looked up to me.

He is my youngest.  I have always looked at him as my little boy. Diabetes meant that Mom hung around more places with him.  He didn’t venture off as much by himself.  He was always more of a homebody.  He was happy to spend time by himself and could easily amuse himself.

My how times have changed!  He now has his XBox headset on at all times and is steadily chatting with a variety of friends.  He is asking to go over to this classmatess house and to the movies with a group of friends.  He is beginning to take better care of his diabetes which allows me to let him spread his wings with greater confidence. 

He was low over the weekend.  I caught one low at 2am and another after 8.  Of course, he was asleep for both of them.  At the supper table, he mentioned that he must have been low a lot the previous night.  He felt he was low at least four or five times.  I said I had dealt with three lows.  The 2am too a bit of treating.  My fiance suggested that he needs to learn to wake up and deal with his own lows at night. My heart broke at him taking on so much responsibility but I knew that this was true. One day he would need to be able to look after everything himself.  I plan on him having a CGM by the time he leaves home but he still needs to learn to actually wake up if it alarms.  My son however was not worried about any of this. He quickly replied that he planned to live with us until he was at least 30 and thus the problem was solved!

He is taking on other problems however.  Sunday night his low insulin alarm went off.  He told me he was going to fill the cartridge before bed.  I know this is not the ideal time to do anything with your pump and I have had that discussion with him before.  Since I test and check things throughout the night, I will keep harping and hope he will fix this habit in the next few years.

But back on track, I went to bed and my son headed to bed soon after.  I forgot about the cartridge and so did he!  At 2:30, I woke up and tested him.  All was fine but his pump was alarming.  My son actually sat up in his bed. I asked why his pump was beeping.  He said “I

forgot to fill the cartridge!”
“How many units do you have left?”
“I guess you are getting up to fill it huh?” I asked as he headed off to the fridge to get insulin.

I was proud to see him taking charge and dealing with his oversight. I didn’t have to deal with anything. I just had to go back to bed.  His 2:30am cartridge change may not have been his finest hour of diabetes care because he was in the 20s (360+) when he got up at 7 but it was a start. 
So when he was up and heading for school this morning, I sat amazed at how much my son is growing up.  He is more outgoing. He is getting taller and more physically mature.  And the one thing I feared would never happen–my son is getting more responsible.  Wonders never cease! I hope it lasts!