In 2009, I met Christopher while I was doing what I do – helping a radio station do a fundraising event. This time it was in St. Louis, my home city. Christopher is a patient of Cardinal Glennon Children’s Medical Center and he has CIDP. He does a much better job of explaining it than I can…
Just a few weeks ago, on October 21st, Christopher was honored at Disney World in Orlando as the Children’s Miracle Network Hospital’s Champion from the State of Missouri. 66 kids from the U.S. and Canada were recognized that night for their spirit and determination to face the health challenges they’ve been given. This was a tough trip for him to make as he was in pain – not like the pain you are likely familiar with – but they kind of pain that occurs when the protective coating of all the nerves in your body is damaged. Or just gone.
He made his way to the stage and got a medal from Miss America, Teresa Scanlan and country music artist Mark Wills. The medal is worth nothing without the journey he took to get it.
Despite his challenges and all the pain, every time I saw Christopher he was smiling. He ALWAYS smiled.
Tonight, Christopher is back at Glennon. Weak, and resting. Sleeping, actually. Something that is hard to do when there is that much pain and it’s hard to breathe.
He has made is final wishes known to his family and his doctors – his mom Christy shared those:
To no longer be in pain and to let him die with what dignity he has left. He doesn’t want any more tubes, machines, etc. Even the feeding tube crossed the line he had drawn.
You may think it is un-normal to let a child make decisions like this and there might be some times that I even might think it’s not right. But I have known enough kids – and I’ve talked with the families of those kids I didn’t know – and I have learned that the kids KNOW. They know they have fought long and hard and they know when the fight is done. It’s not the same as giving up. Christopher has never given up. Earlier today, Christopher’s mom wrote:
Please understand we have not given up hope. This is in God’s hands as always. Christopher is the kid that defied science so many times. He isn’t a textbook case on anything. I think it would be fun to write a textbook on how truly bizarre medicine is by what has happened in Christopher’s life over the last nine years. We originally were given 6 months to 2 years. God gave us nine almost ten!
See? Even his family hasn’t given up.
Here’s the thing…I often post about sick kids. I made a film about kids with cancer. I am pretty sure I have more sick kids as real friends than I have real friends who are adults. I think Christopher and kids like him are the reason. They have a better idea than the rest of us about what is important and they are using their circumstances to try to show us but we are too bone headed to see it or to even care.
So, please think of Christopher tonight. He is one of the strongest kids I have ever known. Right now his friends, family and even his doctors are holding their breath. His mom makes this request:
Please say a prayer for all the children in the hospitals around the world. All the children who are sick and those who are blessed to be healthy. Please say a prayer for all the caretakers. But most of all please say a prayer for yourself. God gave us a gift and we need to thank him for it.