rare disease day 2010

was actually on february 28th.... so this post is a little late... but i wanted to talk about a few diseases that have affected people that i've grown to respect and admire. this is the first of at least two posts on rare diseases.
and, of course, to be a little self-centered... i have APS.. which was on an episode of house once. that makes it really cool- right?
through a friend in hawaii i learned of the cary family. here's their blog. and charming sweet boy ridge:

ridge has multifocal lymphangioendotheliomatosis with thrombocytopenia. yes...
  that's right. it's sometimes called MLT, or CVAT or cutaneoviseral angiomatosis with thrombocytopenia. (depending on what doctors you talk to.) MLT is a rare vascular disorder causing lesions throughout the body, organs and skin. there can be as few as five up to hundreds of lesions at any given time. when ridge was first diagnosed they did an interview that pretty much tells the beginning of the story.

 

ridge is about to turn one now... and is as precious as can be. (his brother, sawyer, is pretty cute too!)

as i've been reading the cary's story.. i've been consistently uplifted by the faith and strength that they have. it is such an encouragement to see a family thriving in adversity, and knowing where to put their trust and knowing what is really important. as i was reading through some of the older posts remembering the journey they've been on i came across this post that alisha put up about a little girl with a rare form of leukemia... kelsie was 5 months old. (here's that link) it's through the website for kari jobe, who sings the song "healer". here are the words:

You hold my every moment
You calm my raging seas
You walk with me through fire
And heal all my disease

I trust in You
I trust in You

I believe You're my healer
I believe You are all I need
I believe You're my portion
I believe You're more than enough for me
Jesus, You're all I need

You hold my every moment
You calm my raging seas
You walk with me through fire
And heal all my disease

I trust in You
I trust in You

I believe You're my healer
I believe You are all I need
I believe You're my portion
I believe You're more than enough for me
Jesus, You're all I need

Nothing is impossible for You

it's important to remember during this walk that the trials we face are not the end of the world. this world just keeps turning, and there are people living their lives everyday like terrible, unfair things don't happen. i remember feeling that way when we lost max... and some when wren was in the nicu. seeing people smiling in the hallways of the hospital... being out and seeing mothers with their babies.... i would think "how can they just live their lives?!" because our problems seem so heavy... our hardships seem so hard... sometimes the news we get is crushing, devastating... it disrupts our expectations of what this life should be. but we can go to The Healer... and he won't always heal the illness, injury, or disease- but he can always take away our hurt. when we realize that everything in this life is secondary. when we realize that this is all just passing away...when we realize that terrible things happen to people, wonderful things happen to people, and normal 2 kids, 2 cars, 1 mortgage with a desk job, died of old age in their sleep, lives happen to people...  we find in Christ "a peace that transcends understanding" by focusing on what's above, not what's here in front of us- be it good or bad.
it's late, and i'm probably rambling here... so i'll close with something ridge's mommy said: "it's almost easier to cling to God now, than in your normal everyday life." ditto that sister. ditto that.