Mothers Day Reflections

In North America, Mothers Day is this weekend.

I have seen that JDRF Canada is doing promotion this week on #Type1derWoman  This looks really fun and I can’t wait to see more.

A few years ago, the DRI did a segment on the Real Moms of Diabetes.  A few of my friends took part. It was equally as moving.

And of course there is the incredible poem written by my dear friend Linda Kaniasty that mothers in the UK put to video.  It still makes me cry.

All of these posts have me thinking about life as a D-momma.  My role has changed a lot over the past 16 years.

I started out as the mother of a toddler with diabetes.  I was lucky.  He didn’t mind the shots.  He was okay with finger pokes.  He hated to eat however.  That was a challenge.

If I had it to do all over again…and it was 2016 and not 2000, well I would be putting him on a pump right away.  There is no need to fuss with injections, a pump would give us the flexibility to let him eat the way  he wanted.  I would have a CGM so that when he fell asleep, I would know if he was just napping versus having a low and couldn’t tell me.

I would still use bribery.  Stickers and rewards were a fabulous way to get through everything from potty training to meal fights.  I would still allow him to inject and have control of the diabetes care for his toys.  This was a great way to give him power.  I would still worry and log like crazy but that is me.

Eventually my toddler grew and went to school.  The worry again was tangible.  I had friends who would be watching out for him in school but I was terrified.  There was so much that could go wrong.

If I had to do it again, I would have released the terror.  He was left in the care of teachers who truly cared about their students.  He had friends who cared about him.  They all would do their very best…or call me if in doubt.  I didn’t need to hover. I didn’t need to stress–as much.  It was okay.  Yes, there would be wrinkles along the way but they were small. He would survive.  We would all learn. It is important to relax a little during these years as greater challenges will come.

As my child became a preteen, the issues again changed. We struggled to find a balance between what he should be expected to do and what I should be expected to do.  I ached that he was expected to do so much.  I grew frustrated when one of us failed.  If I had to give myself advice for that time looking back it would be that it will be okay.  You will find your way.  If he didn’t die,  learn from it…both of you.  Work hard. He is listening in his own way.  It will be worth it.  He can stumble a bit.  Its okay to wipe his knees but he will get it.

When my son became a teen…well didn’t that change everything!  There were now hormones.  There was the teen brain.  There were struggles.  There were worries.  How do you balance allowing him to be a normal teen (with all of the worries that comes with that stage) and being a teen with diabetes? You ask for help.  You reach out to those who have been there…and you pray.

As a teen, my son decided that he knew it all.  He decided that he really didn’t need the care of Mom any more.  He moved away and decided to finish high school while living with his father. I foresaw many problems.  Some of them came to pass…some didn’t.  I felt like a failure. I was a parent whose child didn’t want to live with them.  People reminded me that it wasn’t about me, this was about him.  It still hurt.  My one clearly defined role now became more blurry than ever.

My son is now a young adult.  He is 18 and learning to live with the choices that he has made.  He has stumbled.  He has tripped a few times but he has done okay. He is getting stronger in more ways than one.  He understands his body he tells me.  He is tightening his control.  He has learned. He knows he can still come to me when he loses his way.

So what would I tell that Mom of a toddler now? You’ve got this.

What would I tell that mom who is watching her son head off to school? The school and his peers have your back.

What would I tell that mom of a teen? He really did listen and learn when you were sure he wasn’t.  Somehow you will both live to go through another stage of parenthood.  Some days will hurt but most days will be a blessing because when you look back at where you have been, where things could have gone? Life is amazing!

There are still challenges.  We still have a long road ahead of us.  No matter how old my children are, I am still their mother.  They are still my children. I worry. I care. I love them deeper than I could have ever imagined.  They make me shake my head at times but they also make me proud.

For all of you fellow D-mommas, take a moment and be proud.  Be proud of YOU and all that you have accomplished when faced with this huge burden.  YOU are amazing!

liam barb sept 1999b

 

 

He’s Got This

Over Easter, my youngest son came to visit.  Each time he visits me I am shocked by how much he has grown. My little boy is long gone and a young man is emerging. A child with diabetes is being replaced by a young person with diabetes and I stand in awe.

This time I stood back a bit more. I tried not to fall into old habits of taking over care or nagging about testing. I gently reminded. I compared carb counts now and again when asked.  I tested him at night at his request but mostly I sat and watched.

I wondered how his care was going. He hasn’t told me an A1c in years. I worried about his rates. I worried about his health.  The more I tested, the more I watched, the more my pride grew.

He wasn’t perfect.  He still doesn’t test as much as I would like but when he did test, his results were awesome. When he ate junk, which he doesn’t do as much any more, he nailed the bolus.  When he spiked because of a low cartridge and air being delivered instead of insulin, the spike was no longer in the 20s (360+) it hovered in the low teens.

I sat back and realized that he’s got this.  All of those years of preaching, teaching and sharing have paid off.  He is taking care of himself.  He is trying to protect his body from itself and doing a good job.

In a recent conversation I reminded him that he is the expert in his care.  It is his job to ensure that he is able to demonstrate that to medical professionals that he sees.  He should listen to them and be willing to accept their help but he may also have to remind them that he has been doing this all of his life.  He has been privileged to be trained by some of the very best people in diabetes care in the world.  He has a very good handle on things and a huge support network to reach out to when he is in doubt.

He explained that he finds that very frustrating.  He doesn’t want to get into a contest of who knows more when he sees someone but he feels that after all of these years he does know his body.  He is very healthy.  He has got this…and he has!

hes-got-this-poster2

Diabetes care is tiring and I feel guilty

diabetes care is tiring

I am worn out, dragged out, dead tired…after just two nights of diabetes care.

I am out of practice.

I want a Continuous Glucose Monitor.

I want a cure.

I feel guilty. I can’t wait to get my sleep back again.

My sons came to visit for a few days.  It was the best Easter gift…having both of my boys here with me for Easter dinner! I was over the moon.

Diabetes had to tag along for the ride.  It could have stayed behind.  It played better than it has on some visits, however.

His blood glucose level was perfect. It made me worry.

I was pleasantly surprised when I got up to check my youngest son’s blood glucose levels on the first night.  He was a perfect 5 (90).  I didn’t sleep.

He was perfect. Exactly in range.  What was next? Would he rise? Would he go low? I didn’t sleep. I rested now and then. I checked.  He dropped a bit. Not enough to worry about. I tried to sleep. I worried instead.

The next night his blood glucose was high.

The next night we had the opposite problem.  The cartridge in his insulin pump had run low. His blood glucose went up.  It didn’t go up as high as it had on previous visits.  He is even more fixated on his health and improving his control on his own.  He corrected. He had command of this.

Once again I awoke during the night. I went to his room and checked. He was high still. He corrected.  I went back to bed.  I wondered if he would drop. I wondered if he would go higher.  I worried. I tried to sleep but I worried.

Tonight he is back home. He will be in charge of his own care again. He will be the one to wake.  I will wake up just like I have for too many years.  I will wonder what his readings are but I will be able to roll over and go back to sleep. I won’t be kept awake with a low. I won’t wonder which direction a high will take even with a correction. I will simply roll over and try to sleep…but I will feel guilty because I can just roll over.

Diabetes care is tiring but I get a break.

I put in my time. I had 16 plus years of sleepless nights between babies and diabetes.  My son has had 16 years of diabetes too. He doesn’t get an end.  

As I said, he has become very conscious of his health and his body. He told me that he already has one faulty organ, so he has to make sure that he doesn’t have any more.

He is growing up.  He is a young adult now. He takes most things in stride.  I still wish that he could have an end to testing, injecting, carb counting, lows, highs and all of the rest.  Wishing doesn’t make it so. Feeling guilty doesn’t change allow us to change places.  This is just the way it is.   I will keep wishing for that day when I can say “that was the way it was.”

The Transition Year Troubles

Last week it was rough being a mother of a young man with diabetes. My son wasn’t in DKA or anything as horrible as that.  He was tripping up in the world of paperwork, bureaucracy and diabetes care.

Two years ago he decided that he was old enough to handle his diabetes care, appointments, and schooling on his own. He chose to move to live with his father and take over the responsibility on all of those fronts.  I was forced to stand on the sidelines and offer advice now and again when asked.

I was also left to order supplies for his pump on a semi-regular basis and this is where the trouble began…

I had placed an order for his infusion sets and cartridges.  On Tuesday I received a message on my phone.  It stated that coverage for my son’s supplies had been refused.  I was to either pay the almost $800 bill immediately or return all supplies.

What the heck? My son was under 25 with no insurance.  The provincial pump program was supposed to cover him. Had he fallen through the cracks? Did someone forget to do his paperwork?

I immediately began making calls and sending out emails.  I was sent a copy of the forms that should have been completed for him.  I called the woman at the insulin pump company back.   Slowly the truth began to emerge and it wasn’t pretty…

The pump company hadn’t received new paperwork for my son regarding provincial pump coverage since 2014.

His diabetes center had only seen him once per year but the provincial policy requires him to see someone three times per year.  He had missed most of his appointments.  They had warned him that doing so would result in lost coverage.  He never paid attention.

His diabetes center was for pediatric care and they believed that he had been transferred to an adult center.  They suggested that I contact his former doctor (whom my son felt was still handling his care).

I called his doctor.  I was desperate for some sort of help both in getting my son to realize how important his attendance at appointments were and finding coverage for his pump supplies.

His doctor would not take my call but did say through his secretary that he was continuing to care for my son.  Because my son is 18, his doctor felt that it was up to him to fix the mess that he created.  Fair point.  I passed the message along.  My son made the call.

It is a new week.  A glass or two of wine helped me to decompress.  My son is hopefully beginning to understand that while Mom is always there to help, being “of age” means that he has to handle some things himself.

He has a call into his doctor to set up an appointment and chat about what he can do next.  His doctor is willing to help him get things straightened out (him not Mom). He has booked an appointment with a diabetes clinic closer to his home to ensure that he can make the appointment.

Getting through the transition years

These sound like small things.  In our world they are massive but we will find out way through…and at least there is still wine.

Wondering what sort of diabetes coverage your province offers? Download our free coverage infographic.

Swept away and retired to a desk

Today’s prompt for Diabetes Blog Week asks what is that one thing that we are still clinging on to that we need to let go? What in our diabetes closet needs to be cleaned out?

Honestly, I was going to use a wildcard for this one. I thought it didn’t apply to me any longer.  Diabetes does not live with my full time any more so what could I possibly need to junk out? We cleaned out most of my son’s diabetes supplies when he moved.  Anything left here he needs when he visits. Obviously this was a topic that I was going to have to give a miss. Or maybe not….

sweeping up
Sweeping out the old

There is something that I have been working on for…cough, cough, almost….two…cough…years.  It is something that I need to let go of, clean out, sweep away. My challenge is to sweep away that need to know all and me hands on 100% of the time.  It is now physically impossible and thinking otherwise is emotionally draining.

I have to adjust to the role of no longer being that person in charge. Learning my new role as the person standing in the office listening to what is going on in the trenches but removed from the actual events is a huge challenge.

I no longer have to wake up at various times during the night to test my son. That has its own guilt.  I still wake up through the night out of habit but as time has gone on, I no longer wake in a panic wondering if he is okay and if he is testing.

I have gotten better at having him text me readings.  Originally I wanted to know every reading.  I would stay up to all hours just so that we could talk and he could tell me what his readings had been like.  That didn’t work. He did his best to be busy when I wanted to call and talk.  I had to get rid of that need to know. I had to learn that it was now truly his disease.

We still talk daily.  I don’t know his readings from day to day.  He calls me when he has a problem. We troubleshoot issues together.  I still work on being okay with the fact that I don’t know his A1c.  I still struggle with not being able to hook him up to the technology that I want him to use.  Sweeping out the DMomma who is hands on and replacing her with the DMomma who is just there to help out when things get a little messy or he needs a break has truly been my biggest challenge.

As I have have been swept out of the trenches, I found myself struggling to understand my place on the sidelines.  I worried that I had not prepared him enough. I worried that I would not matter any more. I worried that I would no longer have a role in that community of diabetes parents that had been my home for so many years.

Just like cleaning our house can give you a new perspective, cleaning out my role as a DMomma did as well.  I have seen my son thrive on his own. I have seen him put to use what he has been taught and develop his own confidence.  Standing back has allowed me a new role in the diabetes community and in my son’s life…and its not that bad!

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. d feathers

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

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