Steps of determination and love...

Wow...I was just looking at my sons feet in his hospital bed this morning and marveling at just how big they have gotten lately. How quickly life is flying by...how fast he is growing up. Then I started looking at my feet.

The feet of a mother.

So completely different. My feet walk with a much different purpose then my sons. They walk to my children when they call my name. They walk around the grocery store picking out food to nourish my family. They walk to stay in shape. So different then why his feet walk. His feet walk for joy. For fun. They walk to collect candy on a Halloween evening. They walk to hug and kiss their families. They walk solely to live. To be present where there hearts are drawn to at that exact moment in time.

As a mom my feet walk with a very determined purpose. To heal. To love. To cherish. They walk to give hope for a future without cystic fibrosis. They live to carry me from each space where I can share my sons struggle and bring awareness to the most common genetic disease in the us. They walk with a purpose. They don't take much time off. They don't get put up to rest as much as they should. But they are what keeps me going. They carry me to my purpose. and tomorrow they will carry me thru 3 miles in hopes that others won't have to take those same steps with their loved ones. They walk for a cure. Tomorrow they walk for cystic fibrosis. The most powerful 15,000 steps they take each year.

The steps that mean more than anything in my life.

They walk for my son.

For your son. Your daughter. You.

They walk for 29,999 others...most of which are strangers my feet will never step close to.

But still so important to them. To me.

So tomorrow at 10am these feet will resume their purpose. Their determination . Their mission. Their dream. Their greatest hope. Their greatest fear.

Join us.

To everyone they're just feet....something to be covered with socks and given the occasional coat of nail polish. but to me...they're my greatest asset and my greatest treasure. because they carry me to just where I want to be. 3 miles of pure adreneline and pure bliss. And then they will carry me to my bed tomorrow night to rest my head, relaxing and knowing that with each step I took one of your kiddos, or you yourself were in my thoughts. Pictures of them floating in my head. Praying that maybe this is the last year I'll have to take those steps, but fully prepared to do it again next year and the next year if need be. They walk for your pain. They walk for my pain.

They walk for you...

a new week...a new hope

Gosh it's been awhile, I kept getting online to update and then something kept me from doing it. it's been kinda crazy here, with meetings, cf parents night out, appointments, bipap and iv's and plain ol living life. So now I have a second to let you all know things are going ok. not great, not horrible. thats all i can ask for these days i guess. Conner's been receiving lots of your mail and postcards and he LOVES it! thank you all so much for your generosity. I've gotten a map so I can start marking on it where you all live, everyone who loves and supports him. That will be great for him I believe. He always asks me if certain people who write to him are "in this world" so I think he'd really enjoy the map. As always your continued love, kindness and support are whats getting us thru this whole time.

Parents night out was a blast, lots of our cf parent buddies there for a nice dinner complete with wine (and I don't even like wine but this was yummy!)

Our GS walk is this coming saturday and our team is huge! We have I believe 6 teams nationwide this year and a few have already taken their steps for the cure! thank you for those who have, and to those who yet to as well. WE're knee deep in fundraising now our team is already over $4000 in donations and thats only online, not the checks and cash yet, so that I'm very glad for, and thats just our vancouver walk, not the other walk sites. Next up is the poker tournament my buddy Ryan's putting on (he's 31 with CF), another local CF walk, then our golf tournament for CF....busy time...but it's well worth it.

I'm sure you all know that last week we lost more precious lives to CF, I know we continue to lose people each day to this disease but that's the hardest part of reaching out and meeting the cf community. you make yourself vulnerable to pain. I would like to express my greatest sympathies to the families of Sam, Sonia and Emily...may they finally breathe easy and may you find the strength to keep fighting. Blessings to you.

Conner's due to end IV's tomorrow and we're going to clinic in the am to discuss if we want a short break, which would be great or if we want to keep going. Conner's continuing to struggle to breathe he's tied to his 02, last night at dinner he was on his o2 and still struggled and asked if his bipap would help him breathe easier...the sweetheart. This whole experience has been so difficult at times, and yet quite normal another moment. But its so heartbreaking. breathing shouldn't be something one has to work for, its a natural reflex, involuntary even, yet why is it that he has to consciously think about doing it...uhg. so my hope i guess for this week is for his comfort. whether thats on or off iv's...i just want him to breathe easy...

It's that time of the year again, January is almost to a close and my mind has shifted gears to my favorite season.....Great Strides walk for Cystic Fibrosis season!!! Our walks take place across the nation in the month of May (and a few in early June). Over the 5 years that we've participated in this walk, we've raised well over $10,000 for CF research and drug developement, but this year I have bigger ambitions.
This year my goal for our walk team is to raise AT LEAST $4000 for CF research, and also to have Conner Jones Teams branch out across this nation! Already we have teams started in WA, CA and NY!!! Each individual team will have their individual and team goals. We are reaching for the stars this year!
Please consider donating to our local walk, which is in Vancouver, WA May 8th this year. Please also consider joining our walk team here locally, and if you're far away please consider starting a Conner Jones team where YOU LIVE! It is so easy to do! I am here to help all of you along the way!
Lets make this the BEST year for Conner Jones Team EVER!

to join my local team and/or to donate click this link
http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=6584&idUser=134723

to start a Conner Jones team and recruit team members where YOU LIVE click here
www.cff.org/greatstrides
(and search for the walk nearest you and register a new team and name it Conner Jones team)

Lots of love and support!
Please pass this along to everyone on your contact list and lets make this a very great fundraising year!!!

Love
Sarah Jones
Conners momma