Category Archives: parenting a child with type 1 diabetes

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

 

 

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 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 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 things.

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.

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.

wine

 

 

3 Tips for Parents of newly diagnosed Children with Diabetes

I was recently asked what advice I would give a parent of a child newly diagnosed with Type 1 Diabetes. It has been a number of years since I fell into that category but I can sadly remember it all like it was yesterday.  That being said, it was an easy question to answer and comes in the form of three pieces of advice.
 
First and foremost, live your life four hours at a time.  Do not worry about six hours from now. Do not worry about tomorrow.  Live life in four hour time slots–nothing more.
 
Chances are high that your child is using a rapid acting insulin. They basically last four hours.  Look at readings inside the four hour window.  Look at food and activity in that four hour period.  If you see a reading that is in range for that four hour period give yourself a high-five! You did fabulously! If you see something out of range during that four hours then begin to problem solve.  What can you learn? Did you learn that your child is producing a small amount of insulin now and doesn’t need as much insulin for that food at the moment? Did you learn that not all slices of bread are the same number of carbohydrates? Did you learn that hockey practice before supper changes the amount of food and insulin your child needs?
 
Four hours. Its simple. Its manageable…and for an overloaded parental mind, really it is more than enough to handle.
 
My second piece of advice is to find a support system and use it! Let parents, partners, friends, and people from support groups (online and in real life) help! Share with them, unload on them, and again…use them.  Some people will “get it” more than others and that is okay but find a way to lean on even those who may not get it but are willing to learn, listen or take over for even an hour.  You deserve the break.  You cannot be the very best external pancreas that you can be without a break and an outlet.  Its okay to ask for help or even see a counselor. Many families with diabetes have to turn to someone along the way.  Its okay to do this.
 
Finally, cry in the shower.  Go ahead! Stand in that shower and let it all out. Let go of the big girl/boy pants, crumble and let that strong shell crack for just a little while.  Allow yourself to feel the pain and frustration that comes from a diagnosis of diabetes for your child. Allow yourself to feel the anger and hurt.  Allow yourself to grieve while the water washes away a bit of the pain so that you can be strong again once you step back into the real world.
 
You can do this.  There will be bumps.  There will be victories.  The landscape of your life, and that of your child, has changed forever.  This doesn’t mean that he/she will never achieve their dreams or live a long and full life.  It means that your perspective will shift a little (or maybe a lot). You will find new friendships that will bring you through the worst of times and celebrate with you in the best of times.  Life will be different but it can still be amazing…just four hours at a time.
crying in shower

Its a BAD day for Da ‘Beetus

“Mom you should have warned me!”
What was he talking about?
“Mom you should have warned me that we have a clinic appointment tomorrow! I would have done a lot better. Today was a really bad day for da ‘beetus!”
He did know that he had a clinic appointment today. He simply chose to forget…like he forgot to test a number of key times throughout the day and like he forgot to bolus for his supper! It was a very bad day for “da beetus” alright!
I have downloaded his meter. I have written out his basal patterns and the result is that I don’t want to know what his A1c is because I know it will be bad.  I also wonder what I have been thinking in looking at his basal patterns on the weekend versus the weekdays.  The weekdays are a mess. My first guilty thought was “its time to do some serious basal testing and fix this!”  My second thought was “why?”  This is my son’s last full week of school.  Next week is an exam every morning and then slacking…I mean studying every afternoon. After that it is basically summer vacation, a time when we switch over to a permanent “weekend” basal pattern.
I hate the thought of our team looking at his readings. They are a mess but each one tells a story.  They say… “He didn’t weigh his cereal.”  “He eats constantly and there is no break to test basal patterns.”  “He is working out and we are working at learning how exercise impacts his insulin needs.”  “Mom has given up asking for data and works with the little information that she gets.”
My son said that I should just let our team do their job. That would be great but they have no data either! How do you say adjust that basal or bolus ratio based on a reading that was taken 20 minutes AFTER he ate? Hopefully they will simply be on board with helping to get us a CGM in the fall or whenever the DexCom comes to market.  Perhaps they they will remind him to test if he wants his licence.
I hate clinic appointments. Why do they always feel like you are going into the principal’s even though you know that you are doing your very best? Perhaps I will just go in, keep quiet and let my son handle all of this one…that would make things interesting! Wish us luck!
kid diabetes