Flights are booked

Okay! We leave December 19th for India. We really are going.

Josh and I are taking Cash, and we will both be with him for the first week. I'll stay with him until January 22nd, after which Aunt Dianne and Josh will be with him until AD brings him home on February 24th. Mom and Valerie are also coming while I am there. Somehow two months is a very short period of time in the context of your whole life and yet a long time when you are living it. It is amazing to me that we will be back here within three months, but all that will happen between now and then.

I am going to MISS that kid when I'm back in Aspen and he's still in India.Yikes.

We really are going, we really are.....

A passage to India

Well, this week's big story is the lack of frequent flyer seats available to Delhi in December. We have FF miles (courtesy of some very nice people who spend a lot of time on airplanes), but there are no seats on which to use them. Apparently everyone from India who is living in the United States goes home for the holidays.

So we're looking and looking and looking. The airlines keep telling us to call back in a few days because "maybe they will release more seats". Uh-huh. At this point, I'm thinking of digging my way through the Earth's center to reach India.

Of course there is a special irony in that everyone I talk to on the phone at United is clearly in India themselves.

Exactly

http://www.huffingtonpost.com/ariane-zurcher/a-wish-for-emma-autism_b_777018.html

Ahora mismo

It's weird, but it's hard sometimes to accept love.

I am a person who loves a lot, and who loves a lot of people. Most of the time, I think I am a person who not only readily gives love, but readily accepts it.

But I've found this last month - as so many people have been so generous with their time, money, and love -that it's challenging to let people help me. Rather, I find that I want to give back to them immediately, that I fear I'm not worthy, that I am afraid of disappointing them. I feel like I need to be a better person to live up to all this kindness being shown to us.

At the same time, I know it's not about me - it's about Cash. And I know people aren't expecting miracles, and they aren't doing this expecting something back. And so I will practice accepting all this love, and then sending it back out...

This whole journey will change me, I think.

Sand castle

Cash and I building sand castles last January. Well, me building, Cash smooshing.

Some big thanks

SO many people have been so generous with their time and support and money, it amazes me - more on that later. I want to thank the people who made the Change for Cash event happen at all:

To the Aspen Elks Lodge, for hosting and supporting our endeavors; to Paul and Katie Viola for our beautiful logo; to European Caterers for the awesome food (as always); to Aspen Epicure for the yummy desserts; to Mountain Flowers for the decor; to Shelley Popish, for her work on the auction and raffle; to Jerry MacEachen for all his help on site; to Shanti and John O'Donovan for their accounting work; to Jamie Kravitz for work done and yet to come; to Heather and David Gibson for their bid sheet design and witticisms; to Meredith Carroll, Mike Conniffe, KSNO, and the Aspen Times for telling our story; to Traudl Lyons for her unflagging energy and work on our behalf; and, to EVERYONE who came and celebrated with us. I feel so much gratitude I could burst!

A success

What a success!! The celebration and fundraising event was incredible - I am totally overwhelmed by the turnout and the generosity everyone showed. I keep starting to cry.

First and foremost, it was a great party - lots of people and a fun atmosphere. Frankly, there were a zillion people I would have liked to talk to for a very long time. The food was fabulous, everyone bid up the auction items, and Cash ran around in his walker like a maniac (until fell asleep on Gramma's shoulder).

Tomorrow I have a lot of people to thank, but tonight I'll just say I feel grateful to the whole world somehow. I feel so lucky that so many people love us...

Event today!

Our Change for Cash fundraising event is today at the Aspen Elks Lodge from 1:00 to 4:00pm. Free food, silent auction, vacation raffle - come join us!

Today's Aspen Times

http://www.aspentimes.com/article/20101113/NEWS/101119933/1077&ParentProfile=1058

Heart is full

Thank you to Angel Gray, Beth Wille, Lisa Pranno, Kirsten and Brian Klein, Angela Swint, Monica Davis, and Donna and Bruce Phelps, John and Birgit Suitor, Paula Zurcher, Jerrod Iverson, Emily Sprouse Leslie, Anonymous, Ariane Zurcher, Amy Presby, Jamie and Jim Kravitz, Keri and Seth Miles, Tomiko and Ken Lewark, Georgina and Alan Levey, and Gia Quillen. My heart is full, you guys.

Friends and school

Cash did something the other night I've rarely seen him do - he got upset when a friend left.

Our neighbor Shelley stopped by on Tuesday and brought her daughter Hannah. Cash and Hannah played together and Cash laughed himself silly. When Hannah said goodbye, Cash got distressed and cried. Previously, I've only ever really seen him get upset about me leaving. It was sad to see, but I think a good thing developmentally.

We have a parent-teacher conference today - I love Cash's teachers at The Cottage and his para Elizabeth. They are fabulously kind and expect so much of him. I also love the other kids in his class - Tanner, Ava, Story, Zane, Josue, Alan...they are the cutest and they interact so sweetly with Cash.

Party time

Our fundraising event is only four days away! Please come to the Aspen Elks Lodge on Sunday, November 14th from 1:00 to 4:00pm for free food, a silent auction, and a chance to celebrate with us.

Josh and Cash in 2007

Thank you thank you thank you

Thank you to Jim and Mary Ann Becker, Russell Hoffberger, Dorothy Frommer, Mark and Rae Lampe, Krista and Tom Fox, Kris and Heather Kaplinsky, Mimi Teschner, Judy Kravitz, Nancy Homan, Tara Sheahan, Paul and Sabine Fowler, and Lisa Chiles!

Fabulous column by Meredith Carroll

http://www.aspentimes.com/article/20101109/COLUMN/101109856/1021&parentprofile=1061

My lovely friend Meredith wrote about us in today's Aspen Times. You know Cash and I are secretly fame whores, so we're enjoying our moment :-)

Monday news

Cash has four news signs this month: Mommy, Daddy, hurts, and bunny. Plus maybe "I don't know", which is very cute - he stretches his arms out with his palms up. I have no idea where he learned that one!

Cash came in and and woke me at 6:30am this morning. I asked him if he wanted to snuggle - he nodded yes and flopped down next to me. I love his fuzzy little head.

We are all getting stressed about the fundraising event on Sunday - too much to do! We've pulled this together in about 3 weeks, which is amazing. I'm doing some press interviews this week (I'll post a link tomorrow to an article in the Aspen Times) to get the word out. I have to say that talking about Cash's health issues and developmental delays is emotional for me. Usually, on a daily basis I deal with Cash as he is and focus on all the things he CAN do. This whole event and trip to India means explaining to the world what his limitations are and I find that very trying psychologically. I don't like to have anyone feel sorry for us. But at the same time, I understand that I need to help others understand why we think stem cells could really make a difference in Cash's quality of life, and that means explaining where he is now and what we are hoping for. So I soldier on!

A quiet little guy

A short description of Cash often makes him sound...like a lump. Like, "he's five, and he doesn't talk, and he doesn't walk much without assistance". But in reality, he's an engaged and engaging person. He sort of talks all the time - lots of different sounds, and lots of sign language, and lots of receptive language. He makes eye contact, he laughs, he asks for things. He can be whiny and demanding, he can be naughty, he can be playful. He likes people, and he is attached to his family. In unfamiliar situations, he often withdraws (though he rarely acts out), but he likes to be near his peeps and he seeks interaction with us. It's hard to explain to someone who sees him only rarely that he has a sense of humor and that he learns quickly when motivated. If you take the time to listen to him, Cash actually says a lot.

Watched a tiny bit of Outsourced last night - excited about India!

Thanks

Thank you to Brad Blunt, Dorothy Frommer, Gerhard Mayritsch, Kelly Cleaver, Anne Spaulding, Karon Moore, Shereen Sarick, Debra Mayer, and Carleen Joseph for their recent donations!

Risk

Someone reminded me the other day that no change is not the worst outcome possible from stem cell treatments - that there could be negative side effects or even permanent harm.

Dr. Schroff reports no negative outcomes in her years of doing this, but of course it could happen to us. I know this. I don't like to think about it, but I do know it. And I admit that I am (semi-) prepared for no change, but I'm not prepared for Cash to be hurt in a lasting way, partly because we've assessed the risks, and permanent harm seems unlikely. If I didn't believe that Cash will be okay, I couldn't do this.

I believe that we've been given a chance to expand his possibilities, though that chance comes with a certain amount of risk, and we've got to take it.

Tax deductible donations!

A fundraising campaign in Cash’s honor has been established with NTAF. NTAF is a nonprofit that has been assisting the transplant community with fundraising for more than 28 years. All contributions are tax-deductible and are administered by NTAF for transplant-related expenses only. It was Amanda Boxtel who urged us to contact NTAF, as she too has been working with them since 2007.

Won’t you please consider making and end-of-year tax-deductible donation today?

Make checks payable to:    NTAF Midwest/West Stem Cell Transplant Fund

Memo section:                      In honor of Cash Burnaman

Please mail to:                      NTAF

                                             

150 N. Radnor Chester Road

, Suite F-120

                                               Radnor, PA 19087

For credit card donations, please call 800-642-8399 or visit http://www.ntafund.org/ and enter Cash Burnaman in the Find a Patient section of the homepage.

Excited/Overwhelmed

I'm vacillating these days between being excited and overwhelmed.

Excited because this is an adventure and I am full of hope. Excited because Cash is doing so much right now and I think stem cells will help him to do more. Excited because we are participating in the cutting edge of scientific research and we will help grow the knowledge base. Excited because of the outpouring of love and support we're seeing.

Overwhelmed because travelling to India is a big undertaking. Overwhelmed because throwing a fundraising event is a big undertaking. Overwhelmed because everyone has an opinion. Overwhelmed because this is taking so much money and energy.

Excited/overwhelmed is not a bad place to be in life. It's just a little exhausting/exhilarating.

Mommy

Cash said "Mommy" on Friday :-) The sign is an open hand and thumb to your chin. He did it clearly at school on Friday and did it some more over the weekend, though his thumb often ends up in his mouth. I am charmed of course. I think he likes me.

More thanks

Our latest angels are the Aspen Volunteer Fire Department, Joan Gordon, Alan Fletcher and Ron Schiller, Chuck and Traudl Lyons, Alex and Ann Kaschock, and Katie and Mahlon Neal. You guys rock! You lift my spirits and move me to tears with your generosity.