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.)

Thursday, May 31, 2012

Endings and beginnings

It has been a crazy week. I have tentatively accepted a job! I am still waiting for the final offer from HR, but I am excited and think it will be a great move for Cash and me. Location to be announced next week....

On Saturday, I am taking Cash to Denver. He is spending 3 weeks with his dad. I will miss him, but I am hoping to accomplish our move while he is gone. His father has hired a "nanny" for him.

Tomorrow is Cash's last day of school in Greenville. And he has had his final sessions with Katy (PT), Leni (OT), and Alison (Speech) this week. It's difficult to leave them all - they have been wonderful. Greenville overall has been wonderful. Today we cried while saying good-bye to the lovely girl who cuts Cash's hair and soon I have to say good-bye to all the friends I have made here. I never thought I would find it so hard to leave a place after only 9 months - but it is a special place.

Ooh, Cash used the potty today! I caught him making a "poo face" and whisked him to the toilet where he proceeded to go. We partied in celebration.

Thursday, May 24, 2012

Latest on his progress

Cash is doing great, CNN excitement aside. I've been working on colors and numbers with him and he is showing interest. He will do the signs for red, blue, yellow, and green if he is in the mood, but they are not well articulated. And then last week he tried to imitate me counting on my fingers. He really is trying, but it is harder to do than you might imagine. Think about it: to say "one", you have to use your thumb to hold down three fingers, then to say "two" you have to move your thumb over just a bit and lift a single finger away from the others. It is small movements like that which can be challenging for Cash. But he is definitely trying.

Right now he is goofing off on his iPad, watching PBS Kids. I added an app for potty-training that he seems to like - it is especially designed for autistic kids and shows a Cash-like avatar using the potty. Cash likes to watch it. In fact, there has been some progress on the potty-training front -
he is pretty consistently going first thing in the morning. He will even hold it a bit if I am late getting him there. And he has discovered how to flush. The poor potty is subject to alot of flushing.

Otherwise, things here are a little crazy. Aunt Dianne is home, back from visiting Heather in Florida, and getting ready to move to Orlando. I am considering my next steps in the job search process, which involves a lot of careful thought and research, AND hopefully an imminent move. Mom is preparing herself for that upcoming move. And Cash motors along, happily himself and working on his own little things.


"Life is either a daring adventure or nothing." - Helen Keller

Tuesday, May 22, 2012

Everyday miracles

Just like I planned, I did not watch the CNN program. But I have gotten lots and lots of nice feedback from friends and strangers who have been very kind and encouraging. Apparently, Cash was cute and my love for him came through.

I did the show because I wanted to explain why we decided to go to India for stem cells and what I think Cash got out of it (essentially a faster rate of progress, including walking and improved engagement and communication). CNN called the show "Selling a Miracle" - I would like to note that "miracle" was never a word we used - we weren't looking for a miracle, we were looking for a little improvement. And we got it.

I continue to feel that Cash takes me places I never expected to go, both physically and emotionally. This CNN thing has been a wild, thought-provoking ride - but really, Cash's whole life has been a wild, thought-provoking ride. I have felt the deepest love, and I have felt the deepest sadness and despair. I have seen the best in people - their best generosity and kindness and faith. I have endured insurance companies and bureaucracy and many, many sleepness nights. I have found that I am a stronger and more interesting person than I ever thought I was - I am capable of endless love, not just for Cash, but for everyone, and I am capable of making the hard decision. He is making me into the person I want to be, and it is a bumpy road, a roller coaster even. Hospitals, IEPs, India, CNN, growth hormone, divorce, 7 years of dirty diapers, fundraisers, first steps, learning sign language - through it all, I try to put my hands in air and say "Woo!"

On the other hand, that is not to say that some days I do not put my head in my hands and say "Boo."

Sunday, May 20, 2012

Bring it on

Tonight is the CNN broadcast. I feel calm. I don't plan to watch it. Three reasons: 1) I am pretty self-critical and would spend the whole time thinking how stupid I look, 2) I heard a bit of the preview and they described Cash as "incurable" - what?! I can't watch that and have those kind of words and pictures of Cash in my head, and 3) I will be annoyed if they are really harsh with Dr. Geeta. So, I am going to let everyone else watch it and I think I will eat a few cookies in the other room. Mmmm, cookies.

I have already had a few people contact me about the broadcast through Facebook or the blog. A woman named Rochelle wrote a lovely, pertinent comment on an earlier post below - check it out. And others are looking for information about Cash's diagnosis and our experience in India. I think it is my job to be public and honest about our experience, so I guess I'm ready for whatever this brings. I know that every story about a child or a parent in pain breaks my heart, but I also know that I have an understanding about what it is to have a special need kid and I can share that. I know what it is to be hopeless and what it is to take that dangerous leap into hope. I know that love always wins and that being a force for love in the world is the only thing that really matters.

So I face my little 15 minutes of semi-fame with equinimity.

If you have found this blog after seeing the CNN piece, I might recommend that you read some of the earliest posts about our decision to go to India and what happened there.

Wednesday, May 16, 2012

Mom=Travel Agent

Yikes, I need to write about the CNN broadcast (it's this Sunday!) and Cash's upcoming trip to see his dad. But it is late (because I have spent 3 hours booking Cash's flights to see Josh), and I am tired, so it will have to wait until tomorrow -


Monday, May 14, 2012

My reward, continued

Yesterday I said that I never thought I would write what I did. Two reasons for that:

One, writing about God was unimaginable a few years ago. I had lost my faith somewhere between Josh and Cash. Josh (when I was with him, anyway) was pretty agnostic, and after Cash was born, I couldn't imagine any God I believed in permitting the kind of pain and horribleness that I saw in the world. It's been a long journey back towards faith, but I admit I'm enjoying it. I am still figuring out what I believe, but that is an interesting place to be. It is important to note that this journey started with Cash's trip to India - seeing our community rally around us helped start the healing of my heart. I am not sure what I will believe in two years, but I cherish the return of my spirituality, even if it does not look exactly like any particular church's.

Two, I have always hated it when people said that Cash was given to me because I was "strong enough to handle it". Related annoying phrases included "God doesn't give us what we can't handle", "God sends special children to special people", and "These things happen for a reason". I have fought a minor crusade to make it clear that I am not stronger than people who got "normal" children - I think people just say that as a talisman as if saying the words will protect them from it happening to them. It is true that I have turned out to be damned strong, but any mother I know would have risen to the task. And yet - I had that little revelation about Cash being my reward yesterday. I am not sure how to reconcile my revelation with my firmly held belief that God did not deliberately send me a special needs kid. I think for now I will just wait and see how it sorts itself out because somehow I think they are both right.

Sunday, May 13, 2012

Cash back

So I am going to write something now that I never thought I would. But I try to be honest in this space and today I had a sort of amazing moment and it would be weird to leave it out of this record of our lives.

It is Mother's Day. It was not an easy day - lots of rain, some arguing with Mom, some frustrating events. But viewed in another context, it was a blessed day - I got to be with my Mom, I got to be with my kid, I got to talk to my AD, Dad, and sister on the phone. So really, that makes it a good day.

And I was sitting in church today when suddenly it came to me that Cash is my reward. REWARD. A strange word, but it felt like it came from God. I often think of Cash as a blessing - but today it came to me clear as a bell that he is meant to be a reward. I don't know for what, but it was also clear he is supposed to lead me towards being a better person. That his existence has already made me a better person, along with everyone he touches. And that is very rewarding. It was almost like I felt I had been picked to experience this special joy, the joy of this special child who attracts love and goodness to him. The experience of being Cash's mom is often hard, sometimes brutally so, but today I knew that I had also been rewarded in a million ways by his presence in my life. And I know, I really do know, that it sounds a little crazy to say that message came from God, but it feels like it did.

Wednesday, May 9, 2012

A smile costs 1 cookie

I spent all day puttering around Greenville Hospital in cases. It was fun and interesting, as always.

Today Cash did something new. He never smiles when I ask him to and his teachers made a comment about his refusal to smile on command at the IEP meeting yesterday. So today I was holding a cookie and asked him to smile and he did. Multiple times. I am really pleased. I know it is small, but it will make it much easier to take a decent picture of him!

OMG, I had to pay two months of our COBRA health insurance today. Insane. We're talking over $1800, since it went up from $855/month to $963/month. And I can't let it lapse since Cash is a bear to get covered.

Tuesday, May 8, 2012

Ick Eww Phoo

Ugh, what an awful day. The big awfulness, among quite a few minor and moderate awfulnesses, was an IEP (Individual Education Plan) meeting at Cash's school. I remember Cash's first IEP in Aspen - I was worried sick that his teachers and therapists would spend the whole time telling me how "un-normal" he was. But instead, we started the meeting by listing Cash's strengths and it proceeded on to discussing what we wanted to work on and how they could help Cash. After 3 years of working with Cash's Aspen Elementary team, I didn't dread IEPs at all and looked forward to them as a chance to check in with all his therapists.

Today was not like that.

The IEP meeting here in Greenville last fall was hard - they operate very differently here, and I felt like Cash was just another special needs kid - but I have appreciated his teachers' and therapists' expertise over the year. I mentioned a few posts ago that we have become accustomed to the greater resources that are available here compared to Aspen. I still feel that, and I know that his team at school is kind and well-educated and generally does an excellent job with Cash. However, they run a terrible IEP meeting. It is overwhelmingly impersonal and negative. I understand that they have to do alot in a short period of time in order to meet state requirements, but I cannot believe that they could not do it with more sympathy and kindness. I am the parent of a severely special needs kid - I do not need to hear all the ways he is not doing what other kids his age are. I KNOW that. But all the therapy in the world isn't going to make Cash normal, so I need to focus on all his blessings, on all the things he can do. Again, that does not mean that we do not push him and strive, but it does mean that it offends me and hurts me when people act like he is failing. I know school is designed to measure achievement, but frankly Cash gets to opt out of that, in my opinion. He can only be measured against himself.

So not only was the IEP a two-hour list of the things Cash is not doing, but then at the end, I decided to tell the group that there is another way to conduct an IEP, one where you still report on and set goals, but you do it in an encouraging and positive manner. I think the people in that meeting today are truly a smart and thoughtful group of educators who never meant to upset me - hopefully this will encourage them to look at new strategies for doing IEP meetings. I of course got emotional, but I am glad I said it even though it was very hard for me. I can only hope that maybe it makes an IEP easier for some other parent in the future. 

Monday, May 7, 2012

Angels and fleas

I am currently reading "Expecting Adam" by Martha Beck, written about her experience with her Down Syndrome son. It is a fascinating little book, funny and mystical. Here is one quote that I feel like applies to Cash: "Adam has angels like a dog has fleas. He came here with them, and the more time you spend around him, the more likely you are to get them yourself."

Thursday, May 3, 2012

Resources and therapies

Living here in Greenville has made it obvious to me that we need to live somewhere with adequate resources for Cash. Aspen was lovely when he was little - he had the kindest, smartest, most wonderful therapists and got a lot of personal attention both at therapy and at school. But other towns of Aspen's size just don't seem to have the same quality of therapy - we have to be someplace bigger. He has gotten great care here in Greenville, at Shriner's and at Kidnetics, and that has shown me what is possible. So Cash's school and therapies have become a major consideration for me in considering what job to take.

Plus his breathing is so much better now that we are at a lower altitude.

Mom and I have been on a cleanse recently. It is entertaining, in a hungry sort of way.

Wednesday, May 2, 2012


So I woke up last night at 3:30am after a minor nightmare, looked over at Cash's sweetly sleeping face, and got a little sad. Sadder than I have been in awhile. About him, I mean. I think it is partly because we spent yesterday evening with a cute family with an adorable little boy - I couldn't help but compare him to Cash a bit, even though I really really try not to do that. I try to focus on Cash as himself and as my normal. Sometimes I think I trick myself into thinking he is not as delayed/slow as he is. I think it is RIGHT that I focus on what he does, not what he doesn't, that I celebrate his accomplishments, not fulminate on his deficiencies. But that sort of means I have a skewed viewpoint, and every once in a while I remember what normal kids are like. It is hard.

Cash is getting his two new front teeth. How are those huge teeth going to fit into his tiny mouth??

I am going to turn down a job tomorrow - this is the second one. It's just not quite right.

Tuesday, May 1, 2012

Six and 3/4

Cash and I are on our way to a photo shoot. Alicia who works at the front desk at our apartment complex has offered up the services of her professional photographer husband. She said she just wanted to do something nice for us. Cash has a new tooth coming in, so I'm glad to be able to document the end of his "baby vamp" stage properly. Now ---- what to wear??!

An update on Cash's typical day: wake up with Mommy at 7:00am, be rushed to the potty to pee (as long as Mommy is awake enough to move that fast), get dressed, eat cereal for breakfast, leave at 7:40am with Gramma or Aunt Dianne for therapy at Shriner's Hospital or Kidnetics, get dropped off at school to hang out with Ms. Jan and the kids, take the bus home at 2:30pm, snack, goof off, make sure all his toys are working, cause trouble, pester, play, eat dinner at 6:00pm, take a bath, go to bed around 8:00pm. His current favorite toys are his iPad, Blue Music, his piano, my clock radio, and anything he shouldn't mess with. His current favorite food is chips, but he eats everything. He is being a pain in the neck at bedtime, but he is sleeping quietly and calmly. His breathing is the best it has been his whole life - so much so that I am thinking of taking him off his maintenance meds. Overall, he is thriving. 

From AA Milne:
When I was One
I had just begun
When I was Two
I was nearly new
When I was Three
I was hardly me
When I was Four
I was not much more
When I was Five
I was just alive
Now that I am Six
I'm as clever as clever
So I think I'll be six now for ever and ever