Category Archives: children with diabetes website

View from a plateau

Last night, as I was laying in bed trying to get to sleep, I realized that while diabetes is a constant roller coaster ride, living with a child with diabetes has been a journey in and of itself.

When he was diagnosed over eleven years ago, we were dropped into a forest. I was grateful that there was light and my son was alive to see it.  I had some fear of the unknown but it did not overwhelm me.  I saw the trees but didn’t notice the forest.  I saw a trail that led me forward and with some trepidation I followed it.

Life with a toddler with diabetes had many forests to navigate my way through.  Along the way however, I was thrown a backpack.  It was filled with knowledge and support.  There were Scooby Doo band aids to patch up the “owies” and make me laugh.  That backpack was the www.childrenwithdiabetes.com parents mailing list.  The people I met through the email list are still on this journey with me today.

As we made our way through the forest, there were ravines that came out of nowhere and brought us to their brink.  Those ravines came from dealing with a child too young to understand what has happening to him, NPH unpredictability, and so much more. We still come across them now and then but I have my backpack and have developed strength of character that somehow gets me through.

In the preteen years, we walked along a river bed.  The waters were sometimes calm and gave me a sense of peace.  I could do this.  I had a handle on things but I knew that beneath the water was a current that I could not fathom. Puberty loomed ahead and I enjoyed the calm waters while I could. 

The river bed had its share of rocks for us to stumble over.  We were entering a time when I had to begin to let go.  My son’s doctor wanted him to begin to take ownership of his care.  He was testing but he was to learn about his pump and Mom was to step back a bit.  This brought rough travels, more scrapes and the need for those Scooby Doo band aids more than once. The river led us to the foot of a mountain and I knew that there was no way around it. Puberty had arrived and it was now time to enter the ominous mountain ranges.

I am not a climber. I am not an adventurer.  I had made it this far with help and developing a confidence that allowed me to move forward.  I knew that these mountains could be treacherous and I now knew enough to be terrified.  Puberty–my next mountain range, would bring steep learning curves for both me and my son. The drop from any of these mountains was no less deadly than the ravines we had avoided earlier in our journey. With my backpack tightly attached to my back, I took my son’s hand and we challenged the mountain.

Its been two years since we started this climb.  There have been paths filled with boulders.  There have been grassy patches that allowed us to rest.  It hasn’t been easy but I feel that we have  finally managed to make it to our first plateau. 

I am at a spot where I can now look out and breathe a little.  My son does a lot of his own care. He changes his sites (most of the time).  He fills his cartridges (although not until his pump screams that he is virtually out of insulin).  He tests quite often although not always at the points I would like.  He has began talking to me about when he needs to make changes in his rates and has a pretty good grasp of carb counting.  He goes to bed later than me so he does his last test at night and I only have to wake in the wee hours of the morning to check on him.  He occasionally wakes when I test him now and that gives me hope for him waking when he is on his own one day.

The view from this plateau is amazing. We have come so far but there are still  huge range of mountains for us to traverse.  We have many more teen years and freedom issues to navigate through.  There will be some forms of rebellion, the stretching of wings, and pushing of limits. There will be learning to let go and him learning to stand by himself.  For now, I will enjoy the lull in the fight.  Readings are okay, attitude is positive, and life is good. I will sit here for as long as the diabetes gods will allow.  We will recharge and get ready to tackle the next mountain thrown in our path.  

A stroll down memory lane

It must be spring.  There is still snow flying around outside and my winter boots were on my feet today but I have noticed a restlessness in the air.  I was reading a blog in which the author felt that maybe she was not doing enough in the diabetes community despite raising awareness and entertaining many of us. 

I have had that same feeling in the pit of my stomach.  That question of what are you doing and more importantly–how do you do it better?  I have yet to have any great epiphanies but it did motivate me to start a new project. I decided to “tweak” my website. I am seriously thinking about completely rebuilding and cleaning up the current format.  I found a search engine to make looking through the site that much easier but I still have to decide what my spring website look should be.  In the meantime, I decided that a movie of some of our greatest memories would be in order for the home page

I began a journey back in time as I looked through old photos.  I truly hate Diabetes with a capital H but the warm memories I found in the pictures really helped to ease the pain. I found pictures of a trip we went on to New York.  Many of our online diabetes friends got together and we had a fabulous day at the beach.  There was no awkward time of getting to know one another.  We instantly had known each other for years and the day was amazing.  

I found pictures of our trip across Canada.  Again, there were photos of the many friends we met along our travels.  There was a barbeque in Ottawa, a night in the interior of B.C.  as well as introducing Rufus, the bear with diabetes, to many of our family members. 

As I dug around, I found the photos of our trip to Friends for Life in Florida.  I remember again, sitting down to drinks with “old” friends and having my son disappear with his pals to enjoy his vacation.  There was basketball and Disney World rides for him.  There was pump failure and great contacts for my other son and I.  We found out that the best place in the world to have a pump malfunction was at a CWD Friends for Life conference.  The friends and resources you will find are second to none!

I came across pictures from our Friends for Life Canada conferences and began to look forward to reconnecting with old friends again this summer.  There were walk photos and I remained amazed at the generosity and enthusiasm of so many amazing people.

I still don’t know how I will tweak the site.  I still am working on getting the movie completed and online.  I have however had a day filled with smiles and wonderful memories.  Thanks to all of the great people in our lives who helped create these memories and so many more!

CWD Nostalgia

The sun is shining this morning and despite the cloud cover the temperature has already reached above 20C (76F) and its not even 8am.  The house is quiet.  I am letting the males of the household get some much deserved rest after working hard all week and the dogs? Well they are flaked out on the deck enjoying the light breeze that Mother Nature is providing them so far.

The chaos of merging two homes into our one new home is slowly fading although I still can’t remember where I have decided to place many of our things but it will come with time.  Right now I am choosing to simply enjoy the silence and the peace.  My office is currently my laptop on the kitchen table.  Far from ideal but the view of the backyard makes it a sacrifice I can handle until my fiance and I get my real space ready.

As I sat down and booted up this morning, I of course checked out the Facebook world to see what was happening.  The bulk of my Facebook friends tend to be people with diabetes or families of someone with diabetes.  Diabetes is obviously a big part of my life and I have met many people and made some incredible friends because of this horrible disease.

Today I was treated to many great new pictures. I love getting the chance to “see” so many family and friends and glimpse into their lives as I give them the chance to glimpse into the chaos and wonder we call our life. This morning brought on much nostalgia and excitement. For those of you who don’t know, www.childrenwithdiabetes.com has just finished up another amazing conference for families with diabetes in Orlando.  It was a wonderful idea that came together out of friends wanting to vacation together and now…well its an experience that I would recommend to anyone. I am hoping to go back one day soon but until then I love seeing all of my amazing friends in these great pictures and remember back to when we joined them.

Jeff Hitchcock and Michelle Rago are amazing with a camera.  They capture the very essence of people.  They capture innocence, fun and the amazing friendships that this community has created. I have said it time and time again, I truly don’t know what I would have done for all of these years without so many of these people.  I am blessed to have found a group of friends who have been there for the diabetes crisis’s, for the days when I just don’t want to do this any more, and for the celebrations that only people with diabetes can understand.  They have encouraged me.  We have laughed together and we have shared tears.  It is amazing what the Internet and some amazing people coming together can create.

Now as I said, I wistfully look back at the Florida Conference and long to sit beside the lake with friends like Stacey, Lauren, Michelle, Joanne, Rita, Julia, and more but once again I also have another CWD event to begin to get excited about.  I have been very lucky to have been a part of the Canadian CWD conferences since their inception.  I get to go and hang out with some wonderful friends.  I reconnect with my rock, Laura and so many more. Through these conferences, I have also been able to put faces to some of my fabulous Canadian friends. I look forward to seeing so many of them again and watching their children grow. 

This year will be a shock for my Canadian friends because my children will actually be with me! I know, who would go to a CWD conference and leave their kids behind? Me! The first year they had already been to FFL in Florida and spent time with their father instead.  The next time was during school so they stayed behind once again but this year? Well, its in Vancouver which is where I am from so I am booking flights, packing up the entire family, doing some visiting with one family before we all get together to enjoy learning and fun with our other family!

Its amazing how people who are spread so far away can become so important to your life. I love gatherings like these as well as the small, more informal gatherings we have been a part of.  I look forward to each time I get to get together with my diabetes family and just hang out, be ourselves and know that we all “get it”.  To know that we are all fighting the same fight.

See you all soon!

Support

I truly am one of the luckiest people on the planet. About one year after my son was diagnosed with diabetes I joined the world of technology and “found” the Internet. I had been struggling for most of that year. I knew no one with diabetes. I was living far away from family. Life was hard in a lot of ways. I had a child with diabetes who hated to eat. I did not have a clue how to give him the insulin I knew he needed and keep him conscious. I was spending more meals in tears than not. I was at my wits end.

I searched for children with diabetes and it did not take me long to find my life-line. I found the Children with Diabetes website but more than that I found some incredible friends. I found people that would challenge me to do more…and I did. I found find friends who would help me when times were tough…and they were. I found friends who would cry with me when that was all I had the strength to do. I found friends who believed in me.

Over the years I have lost track of some of these people but many more have remained incredible friends. I have been able to give back to some people and hopefully be there for a few more. I learned about “Friends for Life”. Those are people who are brought into your life because they are struggling to deal with the same chronic illness that you are. They have been there, done that…and guess what? We do have t-shirts!

As I posted the other day, my latest trial has been puberty and not testing. I went to my CWD email list and asked for advice from those who had survived the teen years and have such incredibly well adjusted young adults in their lives. Once again I found awesome advice, incredible support and just as importantly, I was able to open up a venue for others to express that they were going through the exact same thing and how they were handling things.

I wasn’t alone and funny but even those kids that I thought were perfect had had their moments as well. As terrible as it sounds, that made me feel better too!

One of my friends provided me with extra support. She knew of someone who specialized in this issue. He had lived with diabetes for almost 50 years and was well versed in teen aged issues. He kindly called me and we chatted for a bit. He gave me some guidance and helped me to put things in perspective. He told me to call anytime. His time is paid for by Animas (Johnson and Johnson) and they offer his service freely. He was worth his weight in gold to me. I am not claiming that life will now be a bed of roses. He said some very powerful things and I have a LOT of work to do. He did not claim that this would be a cure and my son would instantly realize all that he had to do, the dangers of diabetes, or the sacrifices of his mother. Actually he claimed just the opposite…the kid will hate you but it will work out. Ironically, that was comforting.

Forty-eight hours ago I was stressed, depressed and alone. Today I am know how un-alone I really am. I have incredible friends who look out for me no matter how far apart we may be geographically. I truly am very blessed.