How to donate

Make tax-deductible checks payable to: Help Hope Live, with "In honor of Cash Burnaman" in the memo section

Mail to: Help Hope Live, 150 N. Radnor Chester Road, Suite F-120, Radnor, PA 19087

For credit card donations, please call 800-642-8399 or visit (enter Cash Burnaman into the Find a Patient field.)

Monday, August 29, 2011

On the road

It was really hard to leave. My goodbye party at work was beautiful and I felt surrounded by love. Aspen was an amazing experience and I can't believe I actually found the guts to leave. But I believe that life is about moving forward and growing - life changes on you whether you mean it to or not, so you might as well own it. I am not sure exactly where Cash and I will end up but I know we are off on an exciting adventure.

We are in Tennessee tonight, only 2 hours from our destination of Greenville. We have traveled for 4 days, and Cash and I have added 4 new states to our list - Kansas, Missouri, Illinois, and Kentucky. Cash has been excellent, mostly just calmly riding along. I hate having him immobile for so long and will be enrolling him in school ASAP. We have eaten at too many chain restaurants, seen too many cornfields, and heard Katy Perry's TGIF song too many times. I'm looking forward to being home. Our new home.

Thursday, August 25, 2011

Leaving but not on a jet plane

Leaving tomorrow!!! EEK!

On the other hand, I saw Cash with Josh yesterday and he looked great. He was stumbling around in his new braces, but he was verbalizing alot and generally making a nuisance of himself by getting into everything.

Monday, August 22, 2011

About me, not Cash

So Josh got home on Friday and picked Cash up on Saturday. Cash was standoff-ish to him, but I think that's probably healthy. I am sure he warmed up quickly later. Cash will be with Josh until we leave on Friday.

Final Music Festival concert yesterday! Whew, it's been an incredible 10 years. I spent most of the concert reflecting on the journey and getting ready for the next one. It was a great concert, followed by the post-concert dinner at the Caribou Club, and then Tentball. So much fun. And I got Alan to go to Tentball!

My last hike was also yesterday. Jamie and I climbed Midway off of the Lost Man Loop. At the top, as we sat next to the lake, surrounded by wildflowers and mountain peaks, I couldn't imagine that I could really leave Aspen. It freaks me out.

And then today, some of my favorite trustees surprised me with lunch at the Maroon Creek Club and a goodbye gift from the Board. I just don't have words....I'm not kidding. I'm sitting here and I really can't think of any way to describe my happiness, my sadness, my appreciation, my sense of wonder. The goodbye gift was amazingly kind, but the gift of the love and caring is what I hold in my heart.

Frankly, I'm getting that gift - the gift of love - everywhere I go these days. It makes it REALLY hard to leave.

Friday, August 19, 2011

It's a sign

Cash seems to be using his sign language less. He still signs, but it's less often. But somehow he is communicating alot. It's hard to explain. I can't tell if he is signing less because maybe he is thinking about talking (though he isn't babbling much at all) or if it is because I'm doing too much mind-reading/picking up on his cues. The argument against that is that he is not signing as much with other people either. And he really is very responsive - he follows directions and answers questions with a nod or shake - so maybe we are somehow subtly discouraging signs that way. I guess we'll see what happens.

In one week, we will be on the road.

Thursday, August 18, 2011

Love and leaving

I know my posts are really short these days, but it's just so busy. There's all normal life - school, work, baths, errands - plus packing and moving and saying goodbye.

This is Cash's last day at WindWalkers. They have been so great and Cash really does love horseback riding. I'm very appreciative that they made it possible for us to give him lessons and I do believe riding has helped his core strength. We will miss Beth and everyone at WindWalkers very much.

This was also Cash's last day at the Aspen schools. So hard to leave them! Everyone at the school for the last 3 years has been so kind, so smart, so caring. I think Cash has been extremely well taken care of.

Frankly, nearly everyone associated with Cash's care is exceptional, and the whole community has been so supportive of us and particularly our efforts with the stem cells. It has been an amazing thing to be a part of and is very hard to leave. We love you, Aspen!

Wednesday, August 17, 2011

We're sad

The movers are coming today. Arrgghhh - it's got me all grumped out. I know I want to move, I really am excited, but packing the last things this morning made me so sad. I'm saying goodbye to a whole phase of my life.

Cash was also a little funny this morning. He seemed fine while we were at home, but then he didn't want to get out of the car when we got to school. He wouldn't look at me. He didn't cry but it was clear he wanted to stay with me. Next week is going to be tough.

On the other hand, he's walking and responding like a monster these days.

Tuesday, August 16, 2011


Cash's dad is coming home on Friday after 6 months away from Cash. He'll pick Cash up on Saturday and have him until next Thursday when we leave for South Carolina.

Things are a bit chaotic getting ready for the move. Cash looks unhappy that so many of his toys are gone (packed) and I am just crazy busy. We are all a little bit on edge.

Cash is at summer school this week. He seems to be enjoying it - no crying when I leave him. I hope our new school in Greenville is nice. I'm suspicious that Cash will have an adjustment period after the move where he isn't too happy, but I'm hopeful that he'll settle down soon. He's used to having me, AD, and Mom around, and as long as he's with us, I think he'll go with the flow.

Monday, August 15, 2011

Listening in

Cash is just getting more responsive. He really listens. It is interesting for me - has he been listening all along and just couldn't act on it? Or is the processing new? Regardless, it is so fun to actually talk to him and have him respond.

This morning I told him we were moving. I don't think he understood, but he definitely listened.

Final Board meeting today. I cried.

Friday, August 12, 2011

Thursday, August 11, 2011

Crazy busy

Busy!! 2 more weeks left! Packing! Goodbye lunches! Board meeting Monday! National Council meeting Sunday! More packing! More goodbye lunches! Buying a new computer and hard drive! Governance Committee meeting Monday! West Side Story dress rehearsal Saturday! Arranging Cash to visit G & P this weekend! Arranging movers! Looking at mountains and crying!


Wednesday, August 10, 2011

How do you get to know someone who doesn't talk?

The other day Megan said about Cash that it surprised here that with seemingly so few ways to get to know Cash, how much she actually does know about him.  
I like that. I think some people assume that because he does not talk, he does not communicate. In fact, if you spend much time with Cash, you find out that he is a very definite person, with a definite personality and definite preferences. You just have to listen to him, to pay attention to his signs, his eyes, his actions, his moods. I do sometimes wonder what goes on in his head but that's true for everyone. He is mysterious, and yet he reveals a lot when you are paying attention - in fact, he reveals more every day as he continues to open up since the stem cells treatments.

Tuesday, August 9, 2011

The eyes have it

Yesterday, I drove 5 hours (2 1/2 hours each way) for 10 minutes with Cash's eye doctor in Grand Junction. These are the things you miss if you are elsewhere, say in Spain.

Dr. Lenahan said his eyes look fine and he should see a doctor in about 6 months. Cash himself whimpered from the moment we got to the office building and flat our hollered during the appointment itself. As soon as it was clear we were leaving, he perked up and zoomed out.

Speaking of eyes and glasses, here's an interesting thing about how Cash's mind works: I showed him the sign for "hat" a few months ago (patting your head) - he liked it and he does it alot. Well, now it has become clear to me that he uses that same sign to mean "glasses". It's frustrating because it is wrong, but I also like that he generalized. Hats and glasses do both go on your head, after all.

Cash woke up at 1:30am Sunday night with a bit of a cold (again, the fun things you miss if you are not here). His nose is running and he's a little grumpy but otherwise, he seems fine. I hope it doesn't get worse because I already sent the oxygen tanks back to Lincare.

Cash is back at the public school summer session as of yesterday, no more daycare.

Friday, August 5, 2011


I went out with Megan (our music student from last summer) last night for drinks and dinner at the Nell - we had a fabulous time. It was interesting to hear her thoughts on Cash's love of music. She says it is fun to play for him because he gets so engaged. She also suggested something I had never thought of - that Cash changes the songs on his toys all the time as his way of being creative since he does not have the fine motor skills to play himself. I find that an interesting idea. Also, we talked about how Cash clearly does not have perfect pitch. He really doesn't care if something is in tune (definitively evidenced by the fact that he likes my singing), so what is it that he does like so much about music? He's liked it since he was very very small, and while he does have preferences, he is pretty much happy with anything. I don't understand it, but I honor it. 

Here is Cash listening to Megan play. When she stopped, he signed "more please".

Thursday, August 4, 2011


I haven't really done an update on Cash's progress lately. Mostly that's because there's nothing big to report. He continues to improve his walking - he still walks wide-legged and stumbles sometimes, but he is more stable and he does more maneuvering. He continues to use his sign language, and he has become much more responsive. That's one of the biggest changes lately. He answers yes and no appropriately and follows directions (when he wants to). He's maybe more playful - he has always had a sense of humor, but I think maybe he laughs more and wants more interaction than he used to. And I am happy to report that he has been healthy the whole summer.

I adore him. He is so snuggly and soft and fuzzy and funny.

Wednesday, August 3, 2011

Free your feet and the rest will follow

Cash was kind of grumpy last week - didn't want to walk, didn't want to play. We got him new shoes yesterday and it's like the sun came out. This morning he held my arm while I brushed my teeth, he smiled a ton, and he waved at a stranger when introduced. He wants to go down the stairs by himself too - he keeps walking right up the edge and staring down. It makes me nervous.

Also, his lip is healing nicely. He is one up on me - I'm doing dry needling treatments for the pain in my back (still from the car accident 3 years ago) and I look like I've been beat up. It hurts terribly when the needles are stuck in, but I do believe it will help in the long run.

The movers are coming August 17. The house is full of boxes. And yet there is so much more to do...

Monday, August 1, 2011

Six is a serious age

Cash had a very nice birthday. We celebrated by riding the gondola to the top of Aspen Mountain. Uncle Gib got us comped for entry to the Aspen Mountain Club's buffet, so we ate crab legs and tuna and omelets and mango and goji berries to our hearts' content. At home, Gramma made Cash a gluten-free cake which we let him eat with his hands. He seemed pleased. This picture is from before he had cake smeared from ears to belly button.
He also Skyped with his father earlier in the day.

And now he is six. Let the wild rumpus start!