This past weekend marked one of my favorite times of the year. Its a time when I get to meet up with old friends, make new friends, and work with some of the most amazing people in the world…who also happen to live with diabetes.
Friends For Life Canada is truly that, a place where people walk into a convention facility as strangers and leave as friends for life. This weekend I reflected on the fact that I had been friends with many of the CWD staff for close to 12 years now. I have watched their children grow and they have become not just friends but important members of my family.
I have written before about the profound impact that the conference has on families and sponsors alike. This year was no different. Once again, at the registration booth, as reps and volunteers were packing up their boothes and leaving, we were told how awed they were by the experience. The people involved felt that they were in the presence of something truly amazing.
When I came home and got online again I found many posts from parents and bloggers stating how much they enjoyed the conference and can’t wait for the next one. Families who had never been to a conference before thanked everyone involved and noted how their lives were changed.
Despite the amazing impact that Friends for Life Canada has on families and its participants, one thing struck me again this year…the lack of corporate support. There are a few companies that you see at every event. They know the value of these gatherings and fully embrace them.
Sadly, many vendors from Canada have chose not to be involved. They are missing out. Parents do not go to a CWD conference because of a loyalty to one product over another. Speakers and volunteers are not there because of their allegiance to one company. We come together for support, understanding and to learn!
I am honored to be part of the faculty at Friends for Life Canada. They pay for my flight to the event and cover my hotel room. In exchange, I address various issues and help out where I can. I also enjoy being at the conferences to see what is new in the Canadian diabetes world. In past years, I have enjoyed looking at various glucometers, seeing what is new in insulin, and of course comparing insulin pumps. This year comparison was not an option. I was not able to put my hands on a variety of new technology, including a pump which we are currently in the market for.
I have contacts in the industry that I can go to for product information but it is not the same as seeing a new meter or pushing buttons on an insulin pump. It is not the same as talking to people who are using various technologies and hearing what they think of these products.
What disturbs me even more however, is that many of the parents at this year’s conference were new to diabetes. According to the CWD report, 75% of these families were also new to a Friends for Life conference. They do not have the contacts that I do. They were not able to see and feel many of the options available to them. They could hear about them in speakers’ presentations but they could not talk to companies and have their questions answered.
Their option is to consider going to the Orlando Friends for Life Conference where an incredible number of vendors come together to showcase the best in diabetes care. Why can they come together south of the border but not in a Canadian conference where travel is much less? Is our smaller market share less appealing? Do we not count because we are such a small population? I would hate to think that.
The first time CWD came to Toronto, if memory serves me, there were three different insulin pump companies present. There were at least that many meter companies showing their wares. There were pharmacies, sweetener alternatives, glucose companies, diabetes groups and more. This year there was one pump company, one meter company, diabetes groups, and a few other constant supporters. The rest of the diabetes vendors failed our families. They did not give them the chance to become informed consumers. They failed themselves by not taking part in the most amazing conference for families with diabetes in Canada. No CWD does not pay me to say these things. This is how I feel. This is what other families feel.
If you have a company that caters to the needs of people living with diabetes in Canada, please consider coming to a conference. Please consider getting involved. I guarantee you that the return far outweighs any expense. Ask people who have been. Listen to the families…
“Thank you so much everyone for a fantastic weekend in Toronto. We had a blast!”
“I’m slightly depressed not being around my diabetic mates I met on the weekend.”
“it was an amazing weekend!”
“Thank you for a wonderful conference!”
and the list of accolades goes on. Just imagine how they would have felt if they could have seen and touched more diabetes related “stuff”. If they could have played with more meters or touched more insulin pumps?
Conferences like this are only sustained through the help of sponsors and corporations. Families cannot carry any more of the burden of cost…and those involved in organizing the events will not allow them to be further burdened. I would hope that the Canadian diabetes products industry seriously looks at becoming more involved with Friends for Life Conferences. I promise you that experience will change you. The tears on the children’s faces when they have to leave their new friends will melt your heart. The camaraderie felt and shared by parents and grandparents will make you feel blessed to be there.
To those who have continued to sponsor and take part in this event…THANK YOU! To those who have missed out in previous years…please get involved NOW.
|Some of my Friends For Life!|
Last night I got an email from fellow Diabetes Advocate Mike Durbin asking everyone to take part and/or spread the word about “Diabetes Blessings Week“.
With the American Thanksgiving holiday coming up, I have seen many friends noting the things that they are grateful for throughout the month of November. Gratitude is a great practice and something that I promote in my Life Coaching practice. It is also something that I try to incorporate into my own life.
Mike asked that we blog about a few of the blessings that diabetes has brought into our lives. Ideally you would look at one blessing per day for the week of November 19-25th. Since I am a day late in getting started, I will try to come up with two for my first day…
Actually the top two are simple and intertwined. My diabetes family and CWD conferences.
Its has been almost twelve years since I “found” my family. I had just gotten onto the Internet for the first time. I searched “parents of children with diabetes”. I was instantly sent to a website and a parents email list. There I posted a question about a battle I had been having with my toddler–trying to convince him to eat after giving his insulin. We had been experiencing tears, vomiting, and terrifying lows. I was at my wits end.
Within seconds I received two emails back from parents telling me what I already knew but for some reason could not do. They told me not to give him insulin until after he ate. It was so simple but until another parent told me, I could not grasp NOT giving my son insulin.
That was just the beginning. Over the years, these face-less friends became my support. They were there through the good times and the bad. They understood the bittersweet feeling of having your four year old being able to lance his own finger and draw blood. They understood the exhausting nights and the drag your butt days. They were there to pull me out when I just wanted to curl up and hide under a rock for awhile. They were there through diabetes fights, political battles and personal struggles. No matter what was going on, there was always a strong shoulder to cry on and firm hand to push me forward.
|Beach party with our amazing Friends for Life!|
As the years went by, I was able to share the wisdom taught to me with others. I was also able to meet some of my nearest and dearest friends in person. I travelled to visit some at a beach party. I later travelled to visit others at what has become the foremost diabetes conference in North America–CWD’s Friends For Life. It is the one place on earth where friends connect and friendships truly are made for life.
|Just a few of the amazing people that I am blessed to call “friends”|
Imagine how blessed I felt when I was asked to not just attend a FFL conference but be a part of the staff? I was honored I was humbled. Each year that I attend, I have to pinch myself. I am surrounded by the most amazing people in the diabetes world. Parents, doctors, nurses, educators and advocates…and me. It truly is the high point of my year when I am there!
Diabetes, despite its brutal nature, has brought many blessings with it. The two that make each day a little easier are definitely the incredible friendships I have made and the gathering of those friends at FFL Conferences each year.
|More of my wonderful friends!|
Diabetes is a complex disease. It often leaves us feeling isolated and alone. It doesn’t matter if we are parents of children with diabetes or the person living with the disease the feelings of grief and futility are present. Diabetes can be overwhelming, trying and leave us wanting to crawl under the covers and wish it away.
In March of 2000, I came face to face with diabetes in the worst possible way. It was killing my two year old son. When he survived and his doctor began the process of telling me what to expect and how our life would change, one thing popped into my head. I simply heard “This is what your life is all about.” I don’t remember what he said. It was a lot of jumble about complications, honeymoon periods, and impotence at 20. I do remember that voice though. It was clear and to the point. I have spent the past 12 plus years trying to figure out how to come to terms with that simple sentence.
I used my degree in psychology to try to reason with a toddler who refused to eat despite having injected insulin surging through his veins. I worked on advocacy issues. I have shared our stories and shared Rufus bears with people in the diabetes community. I have volunteered at conferences. I have organized fundraising walks. I have sat down with political leaders and told them our story. Nonetheless it still never felt like I was doing enough.
Recently I came across a phrase that changed that. It was the phrase “life coach”. I had no real idea as to what it was but I decided that I could use one! After thinking about it, I realized that better yet…I could be one. My life has been nothing if not full or ups and downs. I have been blessed with some incredible supports. Perhaps it was time for me to pay it forward.
I completed the Certified Coaches Federation‘s Life Coaching program and knew that I could readily apply the knowledge they provided me to families and people living with diabetes. Life coaches are a great resource to help people with diabetes identify and reach their goals. I am not a doctor, although I play one in real life. I do not give medical advice. I am not a counsellor. I am a mom of a child with diabetes. I am an advocate for people with diabetes. I am a storyteller of our life with diabetes. I am also now a Diabetes Life Coach.
I can work with you to help you become more focused on your care. I can help you to find your way through the maze of jargon and new lifestyle rules. I can give you someone to be accountable to when trying to keep yourself on track. I will listen when you feel overwhelmed and help you to see your way through.
I will not look at your past. I will not judge you. Together we will look at today, examine where you want to be tomorrow and work together to help you get there. I will not judge. I will listen and help to guide you forward.
A life coach can be a wonderful tool to help you on the path to better diabetes management…for yourself or your child. Coaching can be done from anywhere. A telephone call from your living room or a conversation in your kitchen via Skype can be the perfect setting for you to take those first steps to taking control of your diabetes with a life coach.
For more information on Diabetes Life Coaching as well as special pricing offers, please follow me on Facebook. Finding the right life coach is key to any journey forward. I may not be the one for you but please make sure to find someone who is qualified and understands your situation.
She had been alone for well over a year now. Her family was on the other side of the country. Friends were great but she still felt terribly alone. No one truly knew what her life was now like. She had a toddler with Type 1 diabetes.
Before March of the previous year, she didn’t even know that there were different “types” of diabetes. She didn’t know that diabetes could kill you let alone almost kill one of her children. She was no longer so innocent. She was still scared and she felt terribly alone.
Diabetes had caused her to make many changes in her life. She had bought a cell phone–just in case. The family had bought a more reliable car for the many trips back and forth to appointments. Meals were now very structured and their lives were on a timetable–something she had avoided before.
She had done other new things. She had braved her fear of the phone and called a total stranger for support. The woman had been amazing. Her own daughter was a year younger than this woman’s son and diagnosed the month before. They were both struggling along the same path. Despite living in different towns, over the years they would develop an amazing bond.
The other huge thing that she did was join the world of the Internet. Her mother had been pestering her. “Get online! It would be so much easier to talk to you. We can use MSN. It will be great. Just go to your phone company and have them set you up.” Finally she did just that.
The family computer had been used for Reader Rabbit games but now it was going to be Mommy’s toy. She truly had no idea as to what she was getting herself into but she did as her mother suggested. She got an email account. She opened a hotmail account to talk to her mother and sister. She then began to search. There had to be other people out there like her. There had to be other parents of children with diabetes but how would she find them?
After a day of searching and stumbling, she was sure that she would never find anyone else. She knew enough to know that people were diagnosed with diabetes all the time but finding someone who understood her life as it was now? She was giving up hope. Perhaps the search was futile.
Ironically she finally decided to search for something very simple “parents of children with diabetes.” She found an email list. It said that there was high volume of mail so she used her new hotmail account and joined the list. She had no idea what “high volume” meant but she was taking no chances of messing up her normal email account.
She wasted no time. She was at her wits end trying to dealing with diabetes and her now three year old son. She immediately sent a message to the group…”how do you get a 3 year old to eat? He throws up. He refuses to eat. I just cannot get him to eat and yet he has to have his insulin. He cries. I cry. What can I do?”
Within minutes she had an answer. She cried. It had been so simple…to get advice and to solve the problem. She had known the answer all along but for some reason when a woman named Sharon and a woman named Vikki came back with the answer it made sense where it never had before. Suddenly she was not alone.
She now had a community to learn from. There were hundreds of people who had been there and done that. There were people who were at the same stage as her. There were people who had been doing this for years. There were people to help her along and there were people to give her a shove when she needed it.
She had family. She had friends but suddenly at the end of her computer was a new world. A world that contained another family. A world that held people who truly would become her friends for life. They changed her life. They supported her and they helped her grow beyond anything she ever imagined.
The other morning, I woke up, had my usual Chai Latte and headed down into my office to begin my daily computer ritual. I opened my email program, signed into Facebook and checked to see what had been happening in the world since I shut things down the night before. I love to scroll through and read about my many family and friends as well as enjoy the great new pictures that they may have posted while I slept.
On this fateful morning, I came across a post by a teenage friend. I have a number of “friends” who are children that I have known all of their lives or are the children of good friends. Its always interesting to see what they post–good or bad. This young person and the person’s friends almost brought me to tears. I was so proud of what they had to say to each other. I was so impressed and given so much hope by what I read that I had to write about their story.
The poster was disappointed in their own diabetes care. They felt that they had neglected their health over the past week and diabetes had really kicked their butt. They had been running high and knew that it was bad for their body. This person was very upset with their actions–or lack of.
Quickly friends chimed in words of support and encouragement. They understood. They had been there as well. They began to encourage each other. All members of this conversation stated that tomorrow was a new day and they would all work harder to keep themselves healthy. They understood each other. They “got it” in a way that no one else could.
I was so very proud of these young people. They are mature beyond their years. I know their parents. I know that, like me, some of their parents have struggled wondering if their children will “get it”. They fear that their child will never take responsibility for their diabetes–that they don’t understand the seriousness of the disease or that they just don’t want to learn. It appears that we are very wrong.
Even as I write about them, there are tears in my eyes. These young people with diabetes have a maturity that is not often seen in their peers. They are quirky and amazing young people. Their smiles light up a room but they carry a heavy burden. As parents we fear that burden but it appears that thanks to social media, they can share that burden with like individuals and become stronger because of it.
These are not my children but I feel truly privileged to “know” such amazing, strong, and empathetic young adults. Many people refer to children with diabetes as their heroes. These young people truly are heroes. You are amazing! Thank you for sharing in a way that we as parents can begin to understand.
Yesterday, I opened up my Facebook account and saw a friend sharing an article from Kerri Sparling, of Six Until Me . Kerri was discussing “Those Online People” and shared a conversation she had over a coffee. It was about whether the connections made online were “real” friendships or not.
About 10 years ago, I ventured into the world of the Internet. I ran across a website aptly named www.childrenwithdiabetes.com . They had a support list for parents of children with diabetes. I signed up and immediately was in a world where people got it, they lived it, and they understood how I felt. I was no longer alone. They had answers to my questions or at least a shoulder to lean on through the tough times. Their support has never waivered after all of these years.
In the beginning, when I spoke of these people, I didn’t know how to refer to them. They were my online support group. They were people that I had not met and yet they were people that I spoke with on a daily basis. I wondered how others would react if I called them “friends” but they were more than that so to not call them friends seemed to devalue them.
Over time, I realized that they were not my “online friends”. They were not my i”maginary friends” as others who were struggling with the same concept would often say. These people had become my family. They were there in my darkest hours. They were there on the sunniest of days. There were disagreements. There were victories shared. We watched each other’s children grow. We shared in the milestones of all of our children with diabetes and without. We laughed with each other and we cried. We were there for each other through funerals, divorces and marriages.
After a period of years, I was able to begin to put faces and voices to many of the members of my diabetes family. We traveled to various locations and were invited into the homes of these great people. We went to conferences and expanded our relationships.
I was recently asked why I go to the Friends for Life conferences. It was suggested that they were boring and not necessarily worth the money. I was shocked to the core that someone could think such a thing but then I realized that they had not walked were we had. They did not understand that FFL conferences were not just about learning–they have amazing speakers and interactive sessions that always allow me to take home something new. These conferences are a family reunion.
Its as much about learning from the amazing array of speakers that they have as it is about catching up with old friends. I enjoy having a glass of wine with the friends who have helped to get me this far in life. I like chatting and catching up with the people who were there for me when things were going wrong and I wanted to just hide under a rock and call it done. I love seeing the children who were only babies when we first “met” and have grown to be amazing, inspirational young adults.
The diabetes online community has brought together some incredible people. Together we have somehow managed to bring out the very best in one another and create some amazing changes in the world of diabetes.
I hate diabetes and like everyone else, long for a cure. I love the family that diabetes has brought to us however. Their warmth, their kindness, and their unwavering support truly make them “Friends for Life” or as I have said before, my diabetes Family.
Last week I was contacted by my son’s school. They had a child in school who was recently diagnosed with Type 1 diabetes. The principal wanted to know if they could share both the information that I had given them on schools and diabetes with the parents, as well as share my personal information with them. I said of course!
My heart broke that one more family was having to go through this. I ached for the young child (in the primary grades was all I was told) who had to learn how to lance his small fingers and inject his little body parts multiple times each day.
I asked my son if he had been in contact with this child. My son is not big on children smaller than him. They are strange creatures who remain completely foreign to him. He does his best not to socialize with many of them so it was not surprising when he said he had no clue as to who the child could be and had not spoken to anyone.
I suggested that he try to find the kid. I told him to ask a teacher to point the child out to him. He could go up to the little guy and tell him that he had diabetes too. He said that no one in school knows he has diabetes (big Mommy groan!). He said if he walked up to some kid, showed him the marks on his hands from lancing them multiple times each day and showed him his pump the kid would probably go screaming in the opposite direction. He figured going up to him would terrify the child more than diabetes itself!
For my son, being 5,6 or even 7 and having diabetes was no big deal. It was not a source of stress. It was part of life. I couldn’t seem to make him understand why it could be a little scary for a child who had lived a “normal” life up until this point and now was beginning his life with diabetes. The entire concept was simply out of his point of reference. Diabetes, testing, blood, injections, pumps, that was all he could remember. It was annoying but it was his life. I found that rather sad.
Despite my best efforts, my son will continue to remain secretive about his disease. It is his disease however and teaching him to look after himself when I am not around is more important to me than him educating or interacting with others with the disease. I will continue to speak for both of us. I will send the principal a link to the upcoming FFL Canada conference in case the parents are looking for some support this summer and I will learn to live with my son’s indifference which may not always be a bad thing.