You’re a special kid…

I don’t know what it means to feel like I am different from everyone else and that I don’t fit in with the world around me. I know that Michael does, and that it has been something, over the years, that has weighed on him. Jeune’s was so rare, we met one little boy when they were toddlers, another little girl when he had his rib cage expanded at five years old, and one other little baby girl when he was young. It meant a lot for Michael to meet Clarke, I know I already said this before, but I didn’t realize how much until I read an email he sent to Clarke last night:

I’m so happy that I met you, you’re a special kid you know that and it makes me feel better that there’s some one out there that’s just like me, and I hope that we can become great friends. I feel your suffering, its not very pleasant because I get many of the same medical care as you do, the shots the tests and more shots-it’s horrible and its not fun at all, yet we get thru it all the same. (posted with his permission, of course)

They are both special–and they do get through it all the same, and I’m proud of both of them and I know that the world is a better place with them in it–and I’m a better person for knowing them.

Michael’s Song

My brother Craig (you can see pictures of my nephews and his process of trying to build a wall in Mongolia on his flickr site) sent me an email that he had written a song for Michael. To be honest, I thought it was going to be a humorous song as Craig is a pretty funny guy. So I printed out the lyrics and started to read them out loud and we all started to cry and I handed it over to my husband who started singing it and then couldn’t either. We thought it sounded like a country song, Craig said it was a bad cross between Springsteen and Willie Nelson, which I think is accurate except for the “bad”! From a non-singer/songwriter, we are very impressed, especially given he mixed the music in a ger with 2 small boys!

Lyric’s to Michael’s Song:

Heroes are born in bad times
And bad times God knows you’ve seen
With a heart of Gold and a Mother’s love
You’ve walked a road where few have been

Well everyone of us, yeah, we’ll see a fight
Take our best shot sometimes for the wrong but mostly for the right
But on the high and pure road in the struggle for a life
The hero is born like a lone star breaking through the night

And you are my hero
The little guy with the heart of gold
Your laughter sparkles down like a sunny sky rain
Sure am glad to know you, and you’ll be in my heart until we meet again.

I guess a hero’s job is not to break though he may bend
But of tubes and doctors it seems there’ll never be an end
And like a life line’s that made up of a thousand thorns
It’ll save you but you’re skin’s still bleeding and, it seems, forever torn

With a story bigger than it seems your shoulders could ever bear
You struggle on ’cause another choice, well, it just ain’t there
We feel a strength in you that tells us more than we could ever see
With a faith to step out on the water and find the rock beneath

And you are my hero
Like a knight from tales long ago
A reason to smile; to walk another mile
Sure am proud to know you, and we’ll meet up again in just a little while

And you are my hero
The little guy with the heart of gold
Your laughter sparkles down like a sunny sky rain
Sure am glad to know you, and you’ll be in my heart until we meet again.
Yeah, I sure am glad to know you, and you’ll be in my heart until we meet again.

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Thank you, Craig, Michael loves it and is very excited that you wrote him a song, he has it on his iPod!

The Death of an Arch Nemesis

**My brother Craig lives in Mongolia and has a long standing joke with Michael about being arch nemesises (a word?)–or rather Craig jokes and Michael rolls his eyes and laughs. I just wanted to share this because I think he is right and that there are so many kids out there who are unrecognized heroes**

Hellooo Michael,

I have been reading your mom’s reports on all the testing and what is going on. I have decided that I don’t want to be your arch nemesis anymore. Quite frankly, I think you are too tough for me. I’m going to have to find an arch enemy that is a bit less tough than you are as I really don’t like getting beat in my epic battles. I say that because you are definitely one of the toughest people I know. You have been through a lot and you are still fighting on. I’m really glad to be your uncle and although I’m just a bit (and I emphasize the “just the bit” part) older than you I am learning a lot from your tough spirit. Keep it up. A hero is born through difficult times and I think you are definitely a hero. I told your mom this but I think you should hear it as well: they just finished giving out a bunch of medals to some people who can swim quickly from one end of a pool to another, to people who can run around a big circle really fast, to people who can throw a heavy ball a couple of yards, to a person who can jump high, etc.. Everyone is making heroes of those people but this world,as usual, has missed the real heroes and given the medals to the wrong people. The Olympics seems very stupid in comparison to what you all are doing. In my book, you get a gold medal. Keep up the good work.

Craig