We have heard for years, "Be careful online.".
We tell our children, "Don't talk to people you don't know online.".
Really, how can someone build relationships and friendships over the internet? Surely it can't be done. You only know one side of a person you are friends with on facebook, or twitter, or through blogs. The side they let you know. Some people are inauthentic, living out a persona online that isn't at all who they are in real life. These are the ones we tell our children to be careful of, and the ones our own parents are nervous of us running across. Then there are some that give away every little detail, to the point that it's easy enough to know if you want to meet them in person.
When we started sharing our journey with Max back in 2003, only family and very close friends followed along. We would post on very early versions of blogging platforms from the Children's Hospital about every step of Max's diagnosis and treatment. We weren't nearly as connected then with friends and extended family as we are now.
True, we share a good deal about Max and our lives online. It's a life of solitude. We don't often get to travel outside of our city, and we have friends and family the world over that check in daily on Max. It reminds me of the quote I read early on in Max's life about another little boy who had medical difficulties, "We started off wanting to show our son the world; we ended up showing the world our son.".
When I started blogging, I used the Xanga blogging platform. Steve and I both had a page, and didn't always know most of the people who were finding us through friends of friends and commenting on our blog posts. It was a welcome interaction, as in those early days, we had so little interaction with the outside world. We started a series writing Max's story out. From diagnosis to year 3...and very quickly, we had many many followers. Rather, Max had many many followers. It was around this time in 2005/2006, that we met our friend Tim.
Tim lives in Northern Ireland, and started following along to the stories and daily goings on of Max. Through visiting with him over emails and blogs, we experienced life events together. His first child being born...then his second. All of our ups and downs with Max. The many moves we had through 2008. And the illnesses Max has had through the years.
Last year, when Steve took a trip to Scotland, he also took a trip to Northern Ireland, to meet our friend Tim, and his family. Six years of friendship building, before you meet face to face. There wasn't much icebreaking to be done, as they already knew so much about each other. That's the beauty of good online friendships. Every once in a while, you make a connection, and can build on it to the point that you're halfway across the world visiting in the other's home!
Tim and his wife Shona, have been constant supporters of Max, and an incredible source of encouragement for me and Steve. Out of the blue we will get emails telling us they are thinking and praying for us, and it always seems to be at just the right time.
I don't feel that our stories are always that different from anyone's life stories. And I'm always humbled and amazed when I realize just how far reaching Max's life is. Max has touched many people's lives. His fight to live, and to thrive has struck a chord in so many people. He is an inspiration and gives perspective to so many.
When Tim asked us last year if we would be open to him doing the Outlaw Long-Distance Triathlon on July 1st in Nottingham, England, and to choose Max as the charity he wanted to run, swim, and bike for, we were floored. This is no 5K...it is a 2.4 mile swim, 112 mile cycle, 26.2 mile run, the same distance as an Ironman triathlon. He's been training since last winter, and still has a month to go.
We've thought how amazing it would be to fly over all of us to cheer Tim on in person, but that's just not a reality. So, we will be cheering him on from here...behind his wife and kids, possibly his biggest cheerleaders.
We would love for you to cheer too. Tim is running, biking, and swimming for his little buddy Max. If you would like to show your support through fundraising, please click on the Contribute Link. We have already had a few unexpected expenses so far this summer, and have needed to rely on Max's Special Needs Trust to help fill in the gaps that insurance and Medicaid do not pay for.
George has been doing some intensive training, so he'll be more ready to go into public with Max. We've needed to purchase a high end blender to get Max's food to a consistency that will go through his feeding pump. We've had to purchase diapers to supplement what he's allowed through insurance. And we have yet to get his van's air conditioning fixed. In the past few weeks, we've had nearly $2,600 in out of pocket expenses that were not covered by insurance or medicaid. We're thankful that the trust funds has been able to cover a portion of these, but we recognize we will continue to rely on more funds coming into the trust to help purchase the things he needs that are not covered by insurance and medicaid.
It's been an encouragement in Tim's training to know the effort and uncomfortableness of the long distrance racing is in an effort to help Max.
It is humbling to think that Tim is training, sometimes 10 plus hours a week, and thinking he is doing this race to raise funds for Max. For us. Just some random people he met online some 6 years ago. Pretty amazing this technology thing, isn't it?
Tim and his little guy, Sam with Flat Max.
Shona and Sophie with Flat Max.