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

 

 

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

 

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

Balance, Teens and Parents…Does it happen?

As I have written numerous times, our life with diabetes is far from new.  Diabetes barged into our lives over 13 years ago.  We didn’t invite it in but it has become very comfortable in its role of messing with our lives and shows no signs of going anywhere anytime soon.

In the early days, my son was a toddler.  That presented its own challenges but diabetes was mine to deal with 24/7.  I had to count all of the carbs, try to tell him when to eat, inject him and of course test his little fingers multiple times during the day.

By the age of four he reached his first diabetes milestone and was able to lance his own finger and apply the blood to a test strip.  The goal of course has been for him to take over his own care. Mom won’t always be there and frankly, there are many times when he really does not want Mom to be there!

Allowing him to have more freedom and gently (or not so gently) pushing him to care more for himself has many repercussions.  It’s good for him to be able to “do it” without Mom and foster a sense of independence.  It is the perfect time for him to make mistakes–when Mom is here to help him fix the errors and provide some guidance.  It can also make Mom slack and feel guilty.

Moving from dealing with diabetes 24/7 to having someone else carry the meter, bring the glucose, test and bolus can lead to times when I panic.  We have gone on quad rides and I will feel a panic attack begin as I realize that I do not have glucose on me.  Does my son? I forgot to check!  He appears well-trained and he always has some in his jacket so my heart can beat again. Despite that fact, I feel guilty and terrible. I can forget–he can’t.

After many years of fights about not testing enough, I find myself avoiding looking at his meter.  Someone once suggested that I never look at his meter but he still needs help making basal/bolus changes so downloading and analyzing trends is still very important for me to do with him. I once said that I would do this on a weekly basis but some times that week has turned into 10 days.  When I finally look he has missed at least one or two tests every day.  I want to get mad at him but I begin to think that it is more my fault.  I was not on top of things. I was not the adult. I was not the guide that I am supposed to be. I also remind myself that I can lead him to the meter but unless I lance him myself, I cannot make him test.  I often still remind him to test but have come to realize that if I don’t specifically ask what his reading is, he may simply nod, mumble and not bother to get a reading.  I feel like a bad mother and yet I also remind myself that he has to learn. It is his disease.  I may have given him the body by giving birth to him but it is now his to protect.

Its a difficult balance–trying to figure out how much to let go and how much to hold on.  This is not something minor.  This is a life-threatening disease with real implications.  An ignored failed site will very quickly (in our case) lead to DKA. Lows that are not retested and monitored can lead to seizures.  My job is to protect my children.  My job is also to allow them to grow and learn.  It’s a difficult balance and I know that I fail at times.  I simply pray that I get it right enough times that he will remain healthy and happy in the future.

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