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 helphopelive.org (enter Cash Burnaman into the Find a Patient field.)
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Friday, July 29, 2011

Birthday eve

Tomorrow is Cash's sixth birthday. I remember six years ago today - we were sent to the hospital because my blood pressure rose, but I felt fine. Josh and I hung out all afternoon and evening, lying in the hospital bed and watching tv. I remember we talked about having Cash wait two days so he could be born in August. It was peaceful. And then the nurse came in late that evening and said firmly that due to my blood pressure we had to induce. So we went to sleep and the next day, along came Cash.

Thursday, July 28, 2011

Magical creature

It's like someone waved a magic wand over Cash's lip, it is healing so fast. Amazing.

Omg, 4 weeks til we leave.

Wednesday, July 27, 2011

Once bitten, twice shy

Yesterday around noon I got the call from daycare. It is never good to get a call from daycare. The dread descends immediately and is only partially lessened when they say "Cash is okay, but....". Yesterday's minor emergency was that Cash had fallend and cut his lip. It was bleeding alot and they were concerned he might have bitten through. Ugh, just the thought makes me sick to my stomach. So I hopped into the car, zoomed over to school, and checked him out. He looked sort of fine, but there were two bitty cuts near his lip that looked deep. We decided to go the doctor rather than the emergency room. The result is no stitches, though he probably did bite through his lip. Cash seems fine today and it already seems to be healing.

He is an adventure.

Tuesday, July 26, 2011

Tuesday

Thank you to Dana and Gene Powell, and to Barbara Koval and Michael Solheim for their support of our endeavors to help Cash with stem cells! Amazing generosity, it just makes me cry.

And Cash continues to thrive. He's an active little guy these days - walking and learning and playing. He's more work than he used to be - it's great.

We have exactly one more month in Aspen.

Heather will be here in an hour.

Friday, July 22, 2011

Why do birds suddenly appear

Cash is initiating more physical contact these days. Last night, he hugged me, he asked me to pick him up, he wanted to swing on the hammock with me, and he cuddled at bedtime. It totally charms me.

Thursday, July 21, 2011

As sands through the hourglass

I mostly use this space to write about Cash, but I'm going to take a moment to make a record of the other things going on in our lives.

First of all, we are moving in FIVE weeks. I have started to pack but there is still a long way to go. We have found an apartment in Greenville, but we are still looking for a mover and we will have to get furniture once we get there. I need to sort out our insurance and Cash's school once we get there too. Josh is buying me out of the Stillwater house, but we are still waiting on an accounting estimate from our CPA. Mom and AD are living with Cash and me in order to save money this summer and that is proving to be an adventure. We are still working out the kinks of being roommates. Sometimes working out those kinks is painful.

Also, I am starting to get emails from pacemaker school. I need to buy a computer, I need to buy books, I need to decide if I am going to a conference, I need to start getting my head around studying a very complex subject. I got a little scared today of the intellectual challenge ahead.

Also, Cash has had and will have a bunch of appts before we leave. I need to take a full day off to take him to the eye doctor in Grand Junction in 2 weeks. He has an appointment with his braces specialist soon too, and of course every day he has school and/or therapies. Mom has been invaluable as his chief handler and assistant.

Also, Heather and Gib are visiting next week. I am really looking forward to it, I just wish I could have more time with them. I don't want to spend time packing or whatnot while they are here.

Also, the back injury I sustained from my car accident three years ago is acting up again. I am doing some chiropractic work as well as having a physical therapist stick needles in my back about once a week. I am not exercising and I am eating chocolate at a fearful rate. 

In the meantime, I am still working full time at the Music Festival and it is just crazy here. It's crazy every summer, but the point is that it doesn't allow for much else - which is fine usually, I just work to death - but this summer I have other things I have to do that aren't getting done! (See above.)

Wednesday, July 20, 2011

Generosity

Jim just called to let me know how much money he raised at the Wild West Show for Cash -!!! It kills me. I SOBBED when I heard the amount. It is difficult for me to describe how I feel when people make donations to Cash - the gladness, the relief, the sadness that we are even in this situation, the desire to repay, the desire to live up to everyone's hopes, the overwhelming sense of gratitude. It makes me feel humble. It also makes me feel like I want to be a better person. I try to express these feelings by using the money to get Cash his stem cells, by telling people about it, and by trying to be a force for kindness in the world.

It's a little easier now to accept the money in some ways, because we know for sure that stem cells help Cash. I know that the money will be used to improve his life, that it will make a difference. I believe that the people who donate to Cash want that for him and that makes it easier for me to accept all this generosity.

Tuesday, July 19, 2011

An email from Gramma

Gramma sent this email out recently:
People ask us if Cash has shown improvement since the stem cell trip.  This week is 5 months since he got back from India.
1.  He is walking most of the time.  And usually wants to do it himself.  If you ask if he wants help, he nods his head with a definite "NO!".
2.  At the Wild West show the first day he was introduced as "Cash Burnaman".  The second day he was introduced as "Cash Burnaman riding Skippy".
3.  His Speech Therapist said that he is showing wonderful signs of talking.  Bubbles, B noises,tongue action,vocalizing
4.  He hugs.  Leaning in, arms, cuddles, and smiles.
5.  If you are someone he knows he likes he will smile, make a happy noise, and give you a high five.
6. He signs hello and good bye.
7.  "Hey Jude" has replaced "So You had a Bad Day" as a musical favorite.
8. He is a pain in the neck at a restaurant.
9. He gave his WindWalker Horse Gunnar a spontaneous hug at the end of his ride.
10.He knows and will get a specific toy or book.
11. If you say, "Look at the ------.  He does.
12.  When he was refusing to walk and I was letting him sit on the sidewalk and decide he was approached by 2 of those huge magpies.  He looked at me and signed "Bird" very emphatically.
13. He knows that the same word can mean different things.  Fish means the real fish, the fish sculpture, and fish in books.
14. His teacher said he is intelligent.
15. When I forgot his lunchbox at school he went to get it.
16. His new glasses give him an Elvis Costello vibe.
17. I pulled into Wendy's to get him a french fry snack and he clapped.
18. When he's tired he signs "sleepy".
19.  When he is doing something mischevious he smiles when caught and speeds up.
20. He understands conversation.  And if directed at him he will do things in the order you tell him.  As in,  If you eat the tomato you can have a chip.  He doesn't always agree but he understands.  He will go to the garden to get a strawberry or play with Winnie the Pooh or water or put rocks back in the garden.
21.He can stoop and pick things up off the ground. 
22. People who have known him for years (and he is a local celebrity) say "It's a miracle" in English and in Spanish." and it is.

Monday, July 18, 2011

Hats

More

Kiddo just continues to improve. His walking gets better all the time - he stops and starts and turns around and has more control. He still stumbles alot, but less and less. His engagement is improving too - I'm actually a little surprised these days when he stares off into space or doesn't answer me. He is playing with toys more and with a greater variety of them, and he certainly wants you to play with him more. He is making more noises, too, I think - his speech therapist says she thinks he might talk someday.

I'm looking forward to taking him back to India. I want MORE. I love what we've gotten from the stem cell treatment but I want more more more. I love to see him progress.

Wednesday, July 13, 2011

One week

Things you missed this week if you weren't here: Cash riding a horse with confidence and pleasure; coming home after a long day, putting Cash to bed, and then Cash having a dirty diaper that required a full change of his clothes; seeing Cash sign "Mommy" and "love" within 60 seconds of each other; writing a check for day care; watching Cash, who is some very small percentage Native American, be blessed by Native Americans with burning sweetgrass; having a small boy snuggle up to you in bed and then discovering he has truly unpleasant gas; seeing Cash get new glasses; paying for those same new glasses; watching calf roping with Cash; being woken up at 6:00am by Cash playing weird techno on his synthesizer at full volume; accepting donations towards Cash's future, and then bawling all the way home about how generous people are; seeing Cash wreak havoc on a TV set; getting rid of the hundredth pair of jeans with holes in the knees; working on his health insurance; driving two hours to meet with his endocrinologist for 10 minutes; and, getting a soft little hug from a boy on his way to school this morning.

Granted it was a particularly busy week, but still just one week.

Tuesday, July 12, 2011

Beautiful

Thank you to Jim Snyder and Karla Kuban! The Wild West show was beautiful and everyone was so kind to us. Cash had a marvelous time - he rode around on Skippy like a pro. This was the first year of the event and so it wasn't quite as well attended as we had hoped it might be, but honestly, the whole event was filled with so much love. The blacksmith made gifts for us, we saw rope being made, we ate homemade ice cream, I threw an axe, the chicken pooped on our square (well, he missed all the squares so we got the money), and the Native Americans blessed him with sweetgrass and gave us an arrow. And the show was entertaining and fun. The whole thing was incredibly moving and once again, I feel overwhelmed with gratitude and amazement at people's kindness and generosity. Over and over again, Cash shows me both how tough life can be and how beautiful it is.

Friday, July 8, 2011

Galloping along

Last night I was cuddling Cash and I felt sorry for everyone who is not his mom. He is soft and warm and has a fuzzy head. And he brings so many lovely people and interesting experiences into our lives. He is a daring adventure.

Wild West Show tomorrow! I am nervous, but it is nice NOT to be in charge of the event. I actually have three Music Festival events to run on Sunday and Monday, so it will be lovely to just go and have fun at the rodeo this weekend.

Cash is kind of doing the sign for monkey. He has developed a fondness for Curious George. Frogs, on the other hand, have lost favor with him.

Thursday, July 7, 2011

Video killed the radio star

You can see our Grassroots TV appearance to promote the Wild West Show by going to grassrootstv.org and entering "Wild West" into the Show Search area. We are not very dignified - Cash is everywhere and I keep having to chase him.

Tuesday, July 5, 2011

Whoa

Today was a crazy day - a senior staff meeting at 10am, Nominating Committee at noon, Board of Trustees at 1:00pm, and then Cash and I were on Grassroots TV to promote the Wild West Show at 4:00pm. Now I'm back at work at 6:00pm to actually do some work.

The TV show was hilarious - Cash was all over the place, I could not keep him still. I'm not sure it made for very good TV, but that's who he is. He wore a cowboy shirt of Uncle Jack's from 1954. He also tried to eat the microphone.

Jim Snyder is the nicest nicest person ever. A true gentleman cowboy, soft-spoken and kind. He is of course our current hero. And Karla Kuban, who wrote the script for the show, is also lovely. Cash just brings wonderful people into my life.

Monday, July 4, 2011

Cash chooses a new mommy

Cash really walks now, fyi. He still falls and walks a little crazy, but he doesn't like to have his hand held and he can navigate well.

So Mom and I took him "hiking" this weekend. We drove up the Grottos, and Cash walked along one of the paths just fine (granted, it was short and flat). We had a little picnic by the river and then we started up the short walk towards the ice caves and waterfall. Cash, who would not hold my hand, took a little tumble on some gravel. Note that this was NOT a serious fall - no blood, no scratches even - just a misstep. But a lady and her daughter were coming towards us and made a big fuss over him. "Oh the poor baby, is he okay? Oh he's hurt, oh that must have hurt. Are you okay, darling?" The big surprise here was not that Cash fell (again, he was fine), but that he responded to her happily. She hugged him, and he let her. REPEATEDLY. He put his arms around her and his head on her shoulder. I've really never seen him do anything like it with a stranger. When we left (after more cooing by her), he turned around to look after her. I was carrying him of course by that point since he had made such a show of being a poor little baby.

Needless to say, we didn't really get to go up the ice caves - I carried his 40-pound self for awhile before giving up.

Friday, July 1, 2011

Showtime

One week until the big Wild West Show benefit for Cash! It's at the Snowmass Rodeo Grounds next Saturday and Sunday - Pioneer Village opens at noon, and the show starts at 3:00pm. Cash will be wearing a cowboy hat, of course.

Jim tells me that a radio station is running ads all next week and will be on site Saturday, and that Karla is doing interviews with TV stations too. Really this is turning into a dream come true - it's going to help us take Cash back to India. I told someone yesterday that, to quote a song, I seem to have a semi-charmed life. I kind of think we all do, but I'm having a moment of appreciating mine.