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.)

Saturday, June 30, 2012

Not going to the leper's colony on Molokai after all

Boy, am I delinquent in doing an update. The truth is that there is quite a bit going on with me, but Cash is pretty stable. He came home from Aspen sick as a dog with Hand, Foot and Mouth Disease, but he looks good now. For the first few days, he kept getting worse and worse - it started with a few open sores when he got off the airplane, and then progressed to open sores all around his mouth and bumps all over his hands and legs. It was scary-looking. After a couple days, we took him to a urgent care doctor who said the H,F, and M virus would run its course, but in the meantime, he had gotten a secondary bacterial infection. The doctor prescribed an ointment, which in the miracle way of ointments, started clearing things up within 6 hours.

Otherwise, Cash is spunky and sparky. He needs a haircut, and his two front teeth are growing in. The other day he and I were watching two little boys play near us and he smiled and signed "friends". He seems happy and engaged.

We are in Nashville this weekend....

Monday, June 25, 2012


Cash came home from his visit with his dad in Aspen with hand, foot, and mouth disease. He looks like a leper. Seriously. Sores and spots and bumps all over his body, and particularly badly on his face. He looked pitiful when I picked him up, but I just thought he had a nasty cold. The next day I found out it was this virus. Apparently it is going around Aspen and there is nothing you can do about it except wait for it to get better. Poor little kid.

But I am SOOOOO glad he is home with me!! I am way happier than I have been in weeks. I just like his nearness, his sweet little presence. I like the soft pelt of his head, the point of his eyebrows, the place under his shoulder blades where his angel wings are hidden.

Friday, June 22, 2012

24 hour countdown

Freakin' craziness here. Movers, housecleaners, a zillion last minute things to do. I am sad and panicky. Also excited and ready to go.

I miss Cash SO much. The last few nights I've had bad dreams about losing him. Thank goodness he is coming home tomorrow.

Monday, June 18, 2012


I can't wait until THAT KID comes home!! I miss him a ton. He flies into Atlanta on Saturday...and then we are staying in Atlanta! Because, yes - we are moving there. I am spending this week packing all of our stuff. Alot of our things are still in boxes from our last move here to Greenville in September, but there is still plenty to do. It is a little crazy. We will drive out of Greenville on Saturday, pick up Cash from his dad, and start living in Atlanta.

The ATL!  

Thursday, June 14, 2012

Waiting and sleeping

I use this space to concentrate on Cash, but a quick note to my future self about the rest of my life right now: everything is just SO unsettled. It is a time of crazy transition - of change, change, and more change. I knew about 2 years ago that we were entering a period of change, and I knew it would last awhile. But knowing something and living it can be very different experiences. Mostly I think I have rolled with all the changes (including the divorce, the trips to India for stem cell treatments and Cash's results, moving across the country, going back to school, and now moving again and getting a new job), but occasionally it has been overwhelming. Right now, we are in a lull, but it is a weird lull - nothing is happening at the moment, but everything is about to happen. Today, I woke up feeling guilty about sleeping in - and then I remembered that there was no sleeping in two weeks ago and there won't be any again in another two weeks. So I went back to sleep some more.

Tuesday, June 12, 2012

The sweetest face

Just got to talk to Cash on Skype. He looks PERFECT. So beautiful, so clever, so grown-up. He was very attentive to me - he smiled when he saw me and signed "love" and "mommy" when I asked him to. I sang to him and I took the computer around to all his favorite toys so he could say hi and I bounced on the bed just like he does himself. He looked so beautiful...

We are halfway through his 3 weeks with Josh. Mom and I went to Charleston last weekend, just for something to do, which was lovely. It was especially lovely to visit without Cash - he doesn't enjoy sightseeing, he is still too little to walk long distances, and I don't like sticking him in the stroller for long periods. So the trip was a good thing to do without him; however, it is only something to do to keep me occupied until he comes back. It is weird having him gone - in some ways, it is awesome - I sleep until 10:00, I read, I exercise - but mostly it is awful - he is the whole point of my life. All of my much cherished free moments are only precious because of the time spent with him. When all my time is free, like it is right now, I miss the form and meaning he gives to my life. I am so grateful for his existence and the meaning he gives to my existence.

That really sounds cheesy. And believe me, there are evenings when Cash is home, when I am running around like a maniac trying to get things done, that I would love an hour to myself. But I am self aware enough to know that I prefer stealing an hour here and there from my time with Cash to endless hours without him. 

Friday, June 8, 2012

Warning, poo ahead

Last night I suddenly missed Cash intensely. I missed his warm little sleeping body and his fuzzy head and his sweet face.

Per his dad in Aspen, Cash is apparently not feeling very well. He has a low grade fever with a stuffy nose and low appetite. Plus he was constipated for the first 5 days he was there. POO ALERT: don't read any further if discussions of poo bother you. Like many special needs kids, including those with low tone and/or autism, Cash has some pottying issues. He is frequently (very frequently) constipated and he often holds it until he can't hold it any more and it all comes whooshing out. The situation has gotten better recently - he usually goes every few days on his own, without laxative. But we still have to use the Miralax occasionally, and sometimes like every kid it goes the other way and we have to get out the Imodium. Sometimes we have to change 8 diapers in one day, sometimes none, other times one scary huge one. You can see why I have been so motivated to get him potty trained! But I don't think he is quite ready for that. In the meantime, we continue to ensure he eats a healthy, balanced diet, and we keep an eye on whether he needs a little extra help.

And so in the meanwhile, it sounds like Cash's dad and his girlfriend had a poo-filled day yesterday after the 5 days of constipation. Eek.

Tuesday, June 5, 2012


Ohhhhhh, it was a hard custody transfer.

We had to wake up at 3am to drive to Atlanta on Saturday morning, then fly 3 hours to Denver. Cash stayed awake the whole flight - thank goodness for the iPad - and then we got a little wheelchair assistance to the exit. Then while I was on the phone telling Josh where we were, Cash decided to climb off the bench by himself and fell on his chinny-chin-chin. So when Josh walks up - with his new girlfriend, who he had NOT TOLD ME WAS COMING - Cash is whimpering and bleeding. It was really a lovely moment. Cash was fine - he immediately asked his father to drive and said bye to me. I tried to handle the situation with grace despite feeling smacked and blindsided and rushed. The girlfriend seems nice, and I am actually glad to have met the person who will be spending so much time with my kiddo. But a little notice would have been appreciated.

I decided to write about that very difficult moment here on the blog because it's actually a significant part of being Cash's mom. Being Cash's mom means I will always have to co-parent with his dad. I don't know how much Cash's disabilities contributed to the end of our marriage - my gut says it was a factor, but not the biggest one - but I do know we both love Cash very much, and so we struggle on, trying to be good parents to our favorite little kid.

Friday, June 1, 2012


One of Cash's new things is opening the refrigerator. Sometimes he pulls hard enough that he lands on his butt. Other times, he opens the door, looks around, grabs his sippy, and drinks while standing in the open door. It is very amusing and seems like such a "guy" thing.

We said goodbye to Katy The Physical Therapist today. Cash is very fond of her - he hugs her spontaneously. I am sad that she will no longer be working with him.

My job is stuck in HR and I am scared it won't go through. Eek.

We leave at 4am to drive to Atlanta tomorrow. Then I have to say goodbye to Cash for three whole weeks. I am going to miss his fuzzy little head.