Thursday, September 26, 2013

New Challenges

Someone asked me to continue to update my experience has a mother of a teen with diabetes who is living elsewhere.  Let me say its a bigger challenge than having him live here!
There are definitely growing pains.  As a mom, I miss having my sons around me. I actually do wake up during the night and feel lost because there is no one to test or check on. I would gladly teleport myself to some of you sleep deprived parents but unfortunately the only things that I really can do is roll over and hope he is okay where he is.
My son on the other hand seems to be loving not having Mom hover over him and what teen wouldn’t? The rules are very different for him now and he is enjoying it to the extreme I am sure.  A friend reminded me recently that even when children are away from their parents and thinking about doing a certain behavior, often Mom or Dad’s voice is still nagging in the back of their head and they may be a bit more cautious because “what if Mom/Dad found out? They would kill me!” I hope this is the case with my boys…well you know that they continue to have some common sense because its not like I would really “kill” them exactly…
Obviously with a mom who likes to be hands on and get things done and a 16 year old who is loving being away from that, there are challenges. Oh are there challenges!!  Bringing my expectations down to a reasonable level is very, very difficult and in part only done with the help of great friends.
While we do text daily I make sure that diabetes is not often the topic of conversation. We talk like, school and diabetes if he has an issue that needs to be dealt with right away. We have however agreed to sit down and chat about diabetes specifically once per week. We chose Wednesday nights.
The first week this worked perfectly.  He uploaded his pump. I looked at the data, formed my questions and was able to be calm by the time we talked. All worked out really well. The next week I had to be away on the Wednesday so we chatted Tuesday. There were a few more issues. We spoke of what to do when type situations arose. It went okay.  This week, well its been three weeks. The shine was going to wear off of things right?
Yesterday I sent him a message reminding him of our “date”.  I told him to upload his pump when he got home from school so that I wouldn’t keep him up late. Last time he had had computer issues and it took forever to even look at the data. When he got home he sent me a message telling me that the remote for his pump still didn’t work. What??? Had he called the support people? Of course not.  He was waiting for Mom to do this. Mom agreed.
I told him to call me after his supper and we would call pump support. I would keep him on one phone and call the support people on the other so that I could ask him whatever they asked me.  I ate my supper and waited…and I waited…and I waited. It turned out that heading out with a friend for the night was way more important than Mom or a pump issue.  At 11:30pm I told him to take pictures of the back of the pump and the remote, send me details and I would deal with it in the morning. We would also talk pump the next afternoon BEFORE he got busy with other things.
After a bit of troubleshooting on my part, I got his remote working again.  There is definitely an issue so I am waiting for pump support to return my call.
Balancing 16 year old freedom, Mom control and Mom letting go is definitely difficult.  This may be one of the biggest challenges I have faced in a very, very long time.  Its a good thing I have a great relationship with my hairdresser. I may need a lot of hair color to get me through!
A reminder to myself. I may need to post it on a wall somewhere.
A reminder to myself. I may need to post it on a wall somewhere.

Wednesday, September 25, 2013

But the Debris Remains

As I noted before, my youngest son has chosen to finish high school in his hometown which is quite far from where I live.  Despite him being gone, diabetes waste continues to surface in the most likely and unlikely of places!
There were of course numerous test strips in the washer and dryer but that means that he was testing right?
D waste2 (6)
D waste2 (3)
There were strips behind the computer desk and hidden in various places on the floor.
d waste (1)d waste (2)
 There were also caps to insulin vials

d waste (4)

and used infusion sets 
D waste2 (7)


There were strips at the cabin.
D waste2 (5)D waste2 (4)

but my biggest surprise was when I opened a tote that was filled with photos and old frames and found a vial of insulin!
D waste2 (8)
My son may not be living with me full-time any more, but Diabetes is still making its presence known!

Tuesday, September 24, 2013

How to be an Advocate

Advocacy.  What is it? How do you describe it or explain to someone how to become an “advocate”?
A number of months ago I was asked to talk about the topic of advocacy. It was the hardest discussion I have ever done. Its not something that I think about. I can’t say, go through these steps and you will be an advocate. An advocate is just something that we are when we are humans who take a stand. I was an advocate for what I believed in as a young pre-teen and I have continued to be an advocate as an adult and parent.
Google says that an advocate is a person who publicly supports or recommends a particular cause or policy. As a parent, when we stand up for our children in school we are their advocate.  When we go to the doctor and ask for a particular treatment option, we become a health advocate.  We may not be Martin Luther King Jr, Nelson Mandela, or Gandhi but we are advocates nonetheless. We do make a difference.
We make a difference to ourselves and our perception of who we are.  We see ourselves as stronger and more in control of our own destiny.  We make a difference to our loved ones by providing them with a positive role model. Do we change the world? We just might.
Very rarely do advocates strike out on a journey expecting to change the world.  Often, they have begun to travel the road they are on for selfish reasons–they want to change something in their own lives.  They want to make things easier or better for them.  I began to seek out change to the Disability Tax Credit because I saw flaws in the current system.  I knew that I had the strength to stand up for my son’s rights but as I continued on my journey, I realized that many others would not have the resources that I did.  It was important for me to do everything that I could to make the road easier for those who came after me.  After a lot of hard work and support, we have the changes and the much more fair treatment that we see in those applying for and receiving the tax credit today.
fairness report
Parents are taking school boards and provincial departments of education to task and seeing changes in how diabetes is managed in Canadian schools. In California, advocates stood firm and were able to fight to keep nurses in their schools for their children with diabetes.
Most recently, patients here in Canada took it upon themselves to push Health Canada to see the Animas Vibe insulin pump approved for sale.  Phone calls, emails, and letters from everyday consumers put pressure on this regulatory body to give Canadians living with diabetes another choice when it comes to insulin pumps with Continuous Glucose Monitoring capabilities.
Regular people did these things.  People like you and me.  People who simply were not happy with the way things were and publicly asked for change.  Average citizens wanted to see a change in their world…and it rippled into the lives of many others. Its that simple and that complex.
It takes a step forward. It takes action. It takes confidence and a bit of blind faith but we all can be advocates–first for ourselves, for our loved ones…and then for others.
This posts marks the beginning of a new feature I will be doing at Diabetes Advocacy. On a regular basis I will be dedicating posts specifically to what is going on in the advocacy world–a recap as well as creating awareness of specific campaigns that are ongoing.  If you are involved in an advocacy effort, please email me and let me know. 

Monday, September 23, 2013

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.

Monday, September 16, 2013

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

Thursday, September 12, 2013

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?ping

Wednesday, September 11, 2013

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.

Wednesday, September 4, 2013

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