ARCHIVE: AUGUST, 2007

I was at the Country Store when my friend, Roo asked me if I had been listening to the local radio station, KVMR, the previous night.  I hadn't.  Wish I had.  Our friend, Grace, from the band, Organic Flood, wrote a poem about Nick and recited it on the radio. The next time I talked with Grace, I asked her to e-mail me with the poem and here it is:

Hi Shannon,
Here is my poem about Nick...I think about him a lot and I think it
is an amazing synchronistic blessing to be making music with Shelby
right now.  It is truly awesome and exciting.  Thanks so much!
Grace

Nick Snow

Let's talk about Nick Snow, here we go, boy born
through a window of initiation where cancer transforms
with each beat beneath his hands, the water of his music,
a geometry sacred and crystalline, changing from one
beautiful snowflake form to another, keeping him company
as he keeps rhythm, healing his body, his ancient snow soul
knowing the same tools he had long ago will move
molecules, align stars and atoms, alchemical peace
healing with creative release of music, drum beat, heart beat,
the pulse of earth beneath his feet
conga cong, conga cong
baboom of kick, vibration of snare, tribal holla of tom,
crash, lightning symbols in his body configure into light
he grins at the camera, tosses all his sticks into the air
delighted to spark spirit, syncopation of time,
thrum of muscle against hide.
This is my body, he says, this is my blood
my holy, holy spirit
my miracle

                                                   love, grace tea

ARCHIVE: MARCH, 2007

I was invited to speak at a  Partners in Care  conference in Florida at the end of March.

   Keynote Speaker: Shannon Snow, Children's Hospice & Palliative Care Coalition, Watsonville, CA

Last September, the state Legislature made it at least a little easier for the 10,000 to 14,000 California families facing heart-wrenching options for their youngsters. The Nick Snow Children's Hospice and Palliative Care Act of 2006, named for Shannon’s son who had neuroblastoma, a cancer of the nervous system, who "flunked" hospice care twice when his condition temporarily improved, lets seriously ill children receive hospice and palliative care without having to forgo medical treatment that might cure them or prolong their lives.

ARCHIVE: SEPTEMBER 05, 2006

Mrs. Shannon Snow
18606 Cruzon Grade
Nevada City, CA 95959
530-478-9096
www.nicksnow.com

Honorable Arnold Schwarzenegger September 05, 2006
Governor, State of California
State Capitol
Sacramento, CA 95814

Subject: REQUEST FOR SIGNATURE AB 1745/Chan (Perata & Ortiz)

Dear Governor Schwarzenegger:

I am the mother of Nick Snow, the child who Assembly Bill 1745 is named for: The Nick Snow Children’s Hospice & Palliative Care Act of 2006. Nick spent seven years in treatment for cancer, and was known as the child who “flunked hospice twice.” From being through all that, he learned where the deficiencies in the current system are.

He saw first hand the agony parents go through when they have to give up hope and admit their child is dying. AB 1745 will change that. Children will be able to continue pursuing potentially curative therapy and concurrently receive hospice services.

He endured countless trips to the hospital for medications and infusions that could have very easily and safely be given at home if a care team had been in place. He felt that every unnecessary day spent at the hospital was a day of life ripped away from him.
AB 1745 will change this.

I thank you for your continued support, and respectfully ask you to sign AB 1745 into law.

Sincerely,

Shannon Snow

ARCHIVE: JULY 26, 2006

Musings from Mom
This is the weirdest thing. I feel like I'm in a time/space warp or something. It's like in the movies where the woman has multiple personalities, and she wakes up now and again not remembering how she got dressed, or how she happened to get to the store. I think part of me is on autopilot, part of me is asleep, and part of me is on the side watching everything. Bizarre. For a few days, I was starting to think I had this grief thing under control..............then I'm back to the awful, physically painful, deeply sad place.

I had a list of four things I HAD to do before Nick's Celebration of Life Party. Make nicksnow.com.......done and getting better every day. (with lots of help of my friend, Connie) Take over webmastering darcana.com and update everything........done (still needs more work, but then they always do). Finish my book and send it for copyright. Done. Last thing is make The Nick Movie out of all the 8mm and digital video tapes for showing at the party. It took weeks to find the right software and hardware..........multiple false starts..........learned multiple software programs.....ugh..................I have exactly 6 minutes of movie so far and one week to gather and finish the other 84.
 
My brain used to be my friend. It worked well, fast, and logically. I tried to reboot my system by getting plastered at one of Shelby's gigs, but that only slowed down my RAM even more. And I think it deleted some of my harddrive. Now and again, my brain just stops and gives me the blue-screen, where I seem to just sit and stare, thinking of nothing, seeing nothing, and being totally unaware of my surroundings. I had an old computer that I had to whap on the side now and again to jar it into action...........someone needs to whap me.

Everything in my life was Nick related and now I'm feeling a little lost. Not that I only had an identity as Nick's mom and caregiver, but my job was Nick and I lost my job very unexpectedly. So without warning, I'm not only unemployed, but injured to boot. ---And probably a little insane.
Nick was Cancer Free. How can he be gone? In every scenario I ever came up with for his death, never did my imagination come up with him dying from anything other than Neuroblastoma.
 
He won. He beat the cancer. His prize was life. How can he be dead?

Thanks for listening.
Shannon: mom to Nick Snow