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.

The Changing of the Pump

We finally did it...and it hurt. After 10 years of using a Cozmo insulin pump, and almost a year of no warranty, my son got a new insulin pump.

I was warned years ago that when we changed from Cozmo, we were best to simply forget that we ever owned a Cozmo. I was told to go forward as if this new pump was the very first one you had ever used. That was the only way to avoid the grief and pain that came with change. Boy were they right!

The change itself was beyond painless. I knew the pump that my son was okay with (if he had to retire his Cozmo).  The only issue was the color.  I contacted my Animas rep and in literally a matter of days, she had the pump ordered and was in our kitchen to do all of the training. Karyn is beyond amazing!

As we went through the features of his Ping versus the features we had on our Cozmo, Karyn was just as sad as we were to be switching pumps. She told us that she wanted some of those features on her pump! Kindly, another Animas employee asked that I send her a list of some of the features we were missing in hopes of one day being able to secure them for use in an Animas pump.  Did I mention that this company really has great people working for them?

The Ping doesn't automatically switch basals from weekday to weekend. It doesn't remind my son when to change his sites. It also doesn't allow you to preset personalized temporary basal rates or do all of your pump changes on your computer and beam it back to your pump. It does have a remote that speaks to the pump.  Granted we had a Cozmonitor that did that too but we haven't used it in years and it was attached to the back of the pump.  The Ping remote is a handheld devise that allows me to test my son at night, and do a correction without searching under the covers for his pump.

The Ping also allows him to upload his pump to a website and then Mom can "see" all of his bg tests as well as pump issues and basal rates.  This was a great comfort for reasons I will discuss in another post.

We are now about three weeks into pumping with the Ping.  There have been real glitches. We have both accidentally stopped boluses.  He has somehow suspended a basal rate.  He has failed to put a cartridge in properly and had issues but we will get there. This is still a good pump. It has a warranty if we have problems. We have great support and did I mention that its now under warranty?

9/11 Remembered

September 11, 2001. Is there any adult alive who does not remember where they were on that fateful morning?

I was in Wal-Mart.  I had left my house early to drive to the airport 2.5 hours away to pick up my grandmother.  She was visiting from the other side of the country.  My oldest son was in school and my youngest was with me for the ride. 

I was looking at paper towels when my cell phone rang. It was my husband.  He said "A plane has hit one of the towers in New York. There has been a terrorist attack."  I told him he was crazy.  The Americans would never allow terrorists into their air space.  It had to be some weird joke on the radio.  He agreed that the possibility of terrorists doing something of that magnitude was incredible and it had to be wrong. We hung up and I continued to grab a few things before the next leg of my trip.

My phone rang a second time.  It was a woman from Air Canada.  "We have your grandmother here.  We can't fly her to you because all air traffic has been grounded.  We will be putting her on a boat and you can pick her up tomorrow morning." 

What? The terrorist attack was real? Planes grounded? The attack was real?

I spoke to my grandmother who was in great spirits and excited to experience an Atlantic Ocean ferry boat crossing.  My son and I headed home and like many others, I alternated between being glued to the tv and checking my computer for updates from friends.

I had recently found an online support group. The people there had not only become my lifeline, but also my family.  We were frantic to hear from people that we "knew" living and working near the towers in New York. I had a cousin who was an NYC police officer. I had to find out if he was working that day or safe with his family on Long Island. Another cousin was due to go to traffic court that day in one of the Towers. Did he go before the collapse? It was a day of chaos, fear and some relief.

By the end of the day, everyone was accounted for.  There were a lot of prayers for those lost as well as those who made it out alive.  Soon there was a new fear that began to permeate.  I live on an island in the middle of the Atlantic Ocean.  It was easy for me to be cut off from the rest of the world--the rest of my family.

My youngest son relied on insulin to live.  What if something happened? What if the terrorist attacks continued? Would they target pharmaceutical factories? What if I couldn't get insulin? How would my son survive? Could I feed him no or low carb foods? Would he be okay? I could feel the panic. Other friends with children with diabetes were much more creative. One friend investigated getting insulin from rabbits to use for her child.

Thankfully we never had to be concerned with any of that. It has been 12 years.  My grandmother has passed on.  Each year, those who survived remember.  Those of us who watched from our living rooms remember and say an extra prayer. Once diabetes enters your life, its funny how it permeates everything including memories of disasters.

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! 

 

Things to Remember when sendng a child with diabetes to school

It’s that time of year again, the time that many parents look forward to and most parents of children with diabetes both anticipate and dread—Back To School!

For a parent, this is a time when we look forward to the return to routine, early mornings and school lunches.  We stare in shock at the number of clothes that no longer fit our offspring and cringe at the many new outfits and shoes that they require for the upcoming school year.

As parents of children with diabetes, we also begin to worry—will our children with diabetes be safe at school? Will our schools allow testing and injecting in the classroom? Will our children’s teachers understand the very real cognitive impairment that comes with highs and lows? Will someone use glucagon on our child if it is needed? Will our older children test and bolus around their peers? And the list of fears go on and on.

To help alleviate some of those fears, I asked parents to give me their top tips for sending a child with diabetes back to school.   I have since put them all together and have come up with the most important points to remember when sending a child with diabetes back to school…

Keep calm and be strong!   You are your child’s advocate.  You are your child’s protector but remember that most educators also love children.  They know how important your child is and will do as much as they can to help you and your child to feel safe in the classroom.

Do not go into meetings in attack mode. Remember to be calm, rational and offer credible arguments to any opposition to your requests. Often your school personnel know little or nothing about diabetes care.  Remember that you once were probably just as ignorant so be patient, educate and be willing to make compromises where it is reasonable.  You also have every right to stand your ground when the alternative will put your child in harm’s way.

Empower your child.  You cannot go to school every day with your child. (I tried once but the teacher kicked me out) It is therefore important that your child be aware of his/her rights and their responsibilities when it comes to diabetes care.

Ensure that your child knows what to do when a teacher impedes them looking after themselves (stops them from finishing their lunch, using the washroom when high, or having access to water for example).  If your child is responsible enough, he/she may carry their supplies with them at all times so that they have access to them in all classrooms and in the event of a lock-down.

Create and present a diabetes care plan or 504 plan for your child.  If you live in the United States and your child attends a publicly funded school, it is important that you put in place a 504 Plan which outlines the roles and responsibilities of the parents, student, and school. Sample plans can be found at www.childrenwithdiabetes.com as well as the ADA website,www.diabetes.org

If you live in a country (like Canada), without such laws to protect your child with diabetes in school, you may still create a care plan.  Often school boards will have their own plans that you can fill out or you can work with many online templates to create your own.

In either case, it is important that you outline the level of care required for your child, the accommodations that need to be made during exams for high or low bg levels, missed school because of diabetes related appointments, how to handle parties or events at school, what to do about school field trips, after school sports activities and more.  This document should note what is expected from the parents (ie. They will ensure that there are adequate supplies in the classroom), the student (ie. he/she will test before exams), and the teacher (ie.  The student will be supervised when low until back in range)

Educate, Educate, and provide information.  Take the time to set up a meeting with all staff who will be interacting with your child.  Ensure that they know what diabetes is as well as the signs and symptoms of highs and lows in your child.

Share a detailed booklet of diabetes care information for your child’s homeroom teacher.  Provide information on your child’s testing and injecting schedule, general information on the insulin pump and errors that could occur if your child is pumping, ensure that your emergency contact information is highlighted and easily available. Make sure that everyone is aware of policies on eating in the classroom or on the bus as well as whether the school will have someone trained to administer glucagon in an emergency situation.

Provide posters or flash cards that can be placed in the staff room as well as the classroom noting the signs and symptoms of highs and lows.  You may also wish a picture of your childposted in the staff room so that all staff are aware of your child and will not rush them out of a lunchroom or penalize them for being in a hall to get water when high.

Finally, if your child is willing, go into the classroom and present information to the students on diabetes and diabetes care. Knowledge is power.  When children learn to understand the realities of diabetes, they are often your best source of support for your child when you are away from them.

Be a Teacher’s Pet!  If you have the ability, volunteer with your child’s school.  Make yourself and your child visible to the staff. Help out at events or volunteer to chaperon field trips.  This can allow the staff to better know you and understand your concerns.  This can also help you to come to know the staff and feel safer about leaving your child when you aren’t around.

If you are not able to be at the school, reward good behavior! Remember to thank your child’s teacher for a job well done.  Provide thoughtful gifts at Christmas and year end to let them know you appreciate all they do when you are not around.

Don’t forget your supplies.  Make sure that you have a comprehensive list of supplies to send to school with your child as well as a system in place for refilling items as they are used. An emergency red box may be placed in the classroom with low supplies, syringes, spare test strips and batteries.  Depending on your child’s age, supplies may be left in other rooms, at the office or carried by the child.

Some of the items that you may wish to send to school can include:

• Free snacks
• water bottles
• Spare insulin, test strips, infusion sets, site tape, batteries, syringes, glucometer, ketone strips, juice boxes, granola bars, Handi-snacks, hand wash, alcohol wipes, glucose tablets.
• Spare clothes for younger children who may have bladder control issues when high
• Cell phone to contact you if they are unsure of what to do with their care if an office phone is not readily accessible.

Send notes.  Make sure that you keep an open line of communication between yourself and your child’s teacher(s).  This can be done through emails or notes left in the child’s daily school planner.

Attach sticky notes to your child’s food noting the carb counts or exchanges on each item. This can help to ensure proper insulin to carbohydrate/food dosing for children of all ages.

Managing gym class.  Physical activity is important for everyone but it is especially important for people living with diabetes.  It is important for gym teachers to know that diabetes should not stop our children from taking part in events.  Your child should know to test before he/she starts any physical activity. Make sure that everyone knows the range that it is safe for your child to exercise in.  If your child is on a pump, you may wish to set a special “gym day” profile to reduce basal rates or perhaps you simply want to give the child 10 grams of carbohydrates before class to help them maintain their bg level during activity.

My final tip is the most important…Relax and have fun! School should be a time of fun, education, and friendships.  Diabetes can sometimes interfere and make things a challenge but do not let it stand in your way.  Remember that our children are children first and children with diabetes second.  Help them to learn to live with diabetes in the most positive way.  Work with staff in your child’s school so that everyone is comfortable and your child can get the very best out of their school year.

If you have a tip that I missed, please let me know! 

Please Forgive me Mr. Banting

It has been hot here for most of July which is greatly appreciated when you realize that some areas in our province had record snow on the Victoria Day long weekend in May. Because of the heat, yesterday I finally broke out my insulated eco-bag.  It's not often that I have to use it.  I bought it to bring home fish and berries that last time I was home in Western Canada.  Since then it has basically sat in my closet looking neat and clean.

Yesterday was different however.  I had to run out and buy milk and then was invited out to dinner. There was no time to drop off the milk in between nor could I buy it after.  Well I suppose that I could have but I decided to use my eco bag instead!

I pulled it down off of the top shelf of my closet and was shocked to find the skidoo boot liner that had been missing since October! I had torn apart the house looking for it to no avail and there it was quietly tucked away in my cooler bag! I took out the liner to return it to its rightful owner and came across something that made my heart sink.  There, in the bottom of the bag, were not one but TWO pristine vials of insulin.  They were still in their boxes.  They had a lovely little pharmacy label on them stating that they were two of three.

I wanted to cry.  They had been in the bag for at least nine months! Insulin is only good at room temperature for 30 days.  I felt horrible.  How many people struggle to pay for a vial of insulin and I had wasted two of three!? How many dollars was I going to have to throw away? How did that happen?

I know that I am not the first person to lose vials of insulin. I know that I am not the first person who has had to throw unused insulin out--when my son was first diagnosed, we would throw away half a vial of insulin every month because his needs were so small. It still hurts to think of that life-saving elixir being tossed however.

Please forgive me Mr. Banting! I will try to be much more careful with your gift from now on. 

A Mile in His Shoes

When my son wakes up in the morning, the first thing he does is check his iPhone.  He eventually gets out of bed, does what needs doing in the washroom and then begins to scrounge through the cupboards in search of food. Once all of this is done and he is ready to eat, he pulls his meter out of his pocket and tests.

I constantly ask why he doesn't test as soon as he wakes up? When I wake up in the morning, and it's not a school day, my first stop is his room to test him.  After that I do the rest of my morning routine but testing is first on the list before all else and it's not my body.  Why can't he do that, I often wonder.

Today I thought about it a little bit more. For years I have questioned things like forgetting to bolus.  He has had to have insulin with his food for as long as he can remember and long before that. How can he forget to bolus?  How can he go for days and days without changing an infusion set? Doesn't the adhesive begin to annoy him? And the list of questions go on.

But what if I was the person living with diabetes? Would I still be as diligent? I have a hard time sticking to a diet.  I can do a new exercise routine for three weeks and when it is supposed to become habit, for me it becomes annoying and I usually come up with a thousand excuses and eventually stop. How would I then handle a routine that had to last me for the rest of my natural life?

I could count the carbs at every meal. That is habit. I do that all the time now.  In fact, recently a friend and I were out to dinner. I was ready to tell him how many carbs in his supper when I realized that it wasn't necessary.  We didn't need to count the carbs.  My son wasn't there.

What about site changes? The other day, my son said that he should get to do one on me in exchange for all of the infusion sets that I have put in him over the years. I declined. Would I be like him and put off changing them for as long as possible? I would probably need to use numbing cream ( he hasn't used it in years).  The noise of the insertion launching device would freak me out. I would probably also be looking for someone else to do it for me so I didn't pull away.

Testing? Would I test as often as I should? Possibly. I might be okay here because I would have to use AST.  I have tested on my arm before. It was completely painless. That amazed me! Lancing my fingers?? Well that would take a lot more effort and my son makes it look like no big deal.  Once again, what's with the big bang of the lancet? That noise scares the begeebees out of me! I wouldn't be worried about drawing attention to myself in public because...well I just don't really care about stuff like that most of the time.

If I walked in my son's shoes, would I be better at my care? Perhaps but I am a bit older than him.  If I walked in my son's shoes when I was 15, would I be better at my care than he is? I remember what I was doing at 15 and 16 years old.  Diabetes would not have been a welcomed addition to my awkward new life.  I'll have to try to remember that a little more. I am trying but when your child's life depends on something like insulin injections and blood glucose testing, it can be hard to remain relaxed and easy going. I will work on focusing how ill-fitting his shoes are when I try them on. They are his shoes. I can lace them for him but he will one day have to walk in them alone...and as a mother, that still remains scary.

His dirty running shoes, my pasty legs