NEW Greeting Cards listed in Knox’s Shop


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I just added some NEW cards to Knox”s little Etsy shop.  I began the shop to raise money for  medical research back in 2011 and have kept it going in Knox’s memory, and in honor of all the beautiful children with Cockayne Syndrome around the world.

These cards are really unique, made with designer papers and accents. One set has 3 “Thank You” cards included, and the other set features 4 all-occasion cards. All the cards are blank inside, waiting for your personal message. They come with matching kraft envelopes, and will be shipped to you, along with a small information card on Cockayne Syndrome. dscf5836 dscf5837 dscf5839 dscf5840 dscf5849 dscf5851 dscf5854 dscf5846 dscf5857 dscf5856Please consider purchasing hand made greeting cards or original art this holiday season.

All proceeds are sent to medical research for Cockayne Syndrome. Thanks for stopping by!

 

*Music on the player: “Bobcat Pretzel” by John Powell

 

Happy Birthday Knox ~ 4 Gifts Given and Received

Happy Birthday to my little son in Paradise.  Knox would be 4 years old today.

I think the hardest part is not being able to say “I love you”; not being able to hold him.

He’s been gone 5 and a half months.  I miss him terribly.

Giving gifts of love, in honor of Knox’s birthday, was the only way I could think of to say “I love you”.

First, I went to the store and picked out what I would’ve bought him if he was here.  I associate baby turtles with Knoxy because of a painting I made for him that hung above his crib.

I’m sending these clothes to a precious little boy with severe CS here in the USA,  and another identical set to a little boy with CS in England.  I love you, Knox.

Then I painted a bright turtle for a little girl with CS, also here in America.  I’ll include the process photos and finished piece in the next post. I hope she likes it!

Next, I made a new set of cards and listed them in Knox’s Etsy shop. I’ll continue to make and sell butterfly cards and other original art pieces online to support Amy and Friends CS Support in the UK.  Please visit the shop and pass on the link.  All proceeds are donated. I made a donation last week of $150 from card sales. Thank you to everyone who buys the butterfly cards!

I donated the recent proceeds from Knox’s shop to CS research through Amy and Friend’s “JustGiving” site. If you’d like to make a donation in honor of Knox’s 4th Birthday, please leave a note in the message box so I can thank you.  <3

Finally, I made a donation of books to Dell Children’s Hospital.  Knox loved books!  It’s so nice to have good books to borrow while you’re in the hospital.  I wish I was in the hospital reading a book to Knox now.

I have been given four gifts, as well. I received this gorgeous bracelet from another CS mom right here in Texas.  I absolutely love it!

 

A young artist friend of mine presented me with an amazing graphite drawing of Knox.  I loved it so much I posted it on my FB page. I know how difficult portraits are and how much time it takes to make an accurate likeness.  Thank you so much Miss E. J.! See her wonderful drawing of Knox here.  What a special gift!

Third, a friend sent me a poem he wrote about Knox.  The day it was sent to me, I had been asking the very same question presented in the title:

How Has the World Not Stopped?                                                        (2/11/14)
But I now know
that nothing
escapes a black hole.
That gravity pulls,
slowly at first,
then faster and faster
until the frail shell protecting us
collapses,
and air
no longer
surrounds us
and we are crushed.
Within the heart
of this heaviness
time ceases to exist.
The normal flow of life
is torn on the tiniest snag of circumstance
into spirals of endless repeating memories.
Eventually we’ll be spit out
into an alternate universe,
that expects us to live
as if you no longer exist
and only pities us
when we cling
to the warmth
of your presence.
The strangest part
is
that for those whose path arcs
far
from your massive absence,
life
seems unchanged.
Except,
perhaps,
for a sense of relief
at barely
having
escaped.
(c) 2014  Elwood Fischer

Thank you for this gift, Elwood.  The words are meaningful and I’m blessed.

And the fourth gift was a video.  Knox’s grandmother sent me a video she found on her iPhone of Knox’s first few moments of life. I was struck to the heart with sorrow to see Knox as a newborn again and to hear his cry.  I remember thinking how beautiful he was, and at the same time, there was a feeling of incongruity in the room that I remember, as well.  It didn’t feel like there was anything specifically wrong with Knox in that moment, but something suddenly seemed wrong with life itself.  I still don’t understand it.   The video is hard to watch but it’s a gift I wouldn’t trade.

Happy Birthday my sweet angel ~ I hope you and your Great-Grandmother are enjoying your shared birthday together today and having a wonderful time.

 

Knox,  we love you!

Published in Somerset Studio Jan/Feb 2014

I’m surprised and delighted to see my Bandit Girl and the Ladybugs paintings( I, II, and III)  featured in the current issue of Somerset Studio!  My heart-felt thanks, once again, to the editors over at Stampington for including my work.

Be sure and check out the current issue at your local bookstore.  Here in central Texas they can be found in Barnes and Noble bookstores and they are also carrying them in Michael’s stores!

And speaking of Somerset Studio, the current challenge for Jane Austen inspired art is due by Feb. 15th. I know there are many of you out there who create beautiful work (I see your blogs!) and have never gotten up the nerve to submit your work for publication.  Let 2014 be the year you put yourself out there!  Create, send it in, and see what happens!

I’ve got some sweet “Thinking of You” cards I just added to Knox’s Etsy shop. Remember all proceeds from his little shop go to CS research and to the aid of families with a child suffering from this syndrome.  Check out Amy and Friends for more information on the charity I support with these funds.

 

And now for a bit about my Knox.  The hard truth is he’s been declining since his 3rd birthday last July. He was hospitalized twice recently, once in late October for dehydration and then immediately following for his first case of pneumonia.  He has been weakened by illness and is now becoming ill frequently. Over the last 3 months he’s lost weight and now weighs a mere 12 pounds, 10 ounces.  He continues to eat well by mouth but his body does not absorb the calories.  Today, he is recovering from an ear infection he developed last week and is finally feeling better.

We had the chance to attend a special birthday party in December!  Knox’s little friend, Miss A., who also has severe Cockayne Syndrome, turned 2 years old and we had a wonderful time celebrating with her family.  As far as we know, Knox and Miss A. are currently the only children in Texas with CS2.

For those of you that have been following my blog for a while, I appreciate your prayers and kind thoughts on our behalf.  This road is getting harder.  The company I keep each week includes Knox’s nurse, his therapist, and the hospice staff.  I’m thankful for them.  Maybe I’ll write more about Knox later, but right now this is all I feel I can share.

Don’t forget to click over to my FB page and like it! I don’t have as much time to blog as I used to, but I try and post on the FB page every other day or so.  I’m also in Instagram as scarlettclay.

Up next: Lunchbox Love Notes

Thanks for stopping by and Happy New Year!

 

 

 

Amy and Friends CS Retreat 2013

We traveled over to North Wales last week to attend our second Amy and Friends Annual Cockayne Syndrome Family Conference.

My son, Knox, has a severe form of Cockayne Syndrome.  It’s a terminal condition that is causing him to age faster than normal.  Instead of growing, gaining weight, and reaching new milestones, he stays small, fails to thrive, and deteriorates.  I’m grateful to be connected to other families around the globe who are traveling this difficult road.  Amy and Friends is a registered charity in the UK that aims to support CS families, as well as fund crucial medical research which will one day lead to a treatment for CS.

Each September they hold a retreat at this lovely hotel.

For three days, families from all over the world come together.  They all have one thing in common: Someone they love has/had Cockayne Syndrome.  There is laughter and love, heartache and tears.  Some children are missing from last year and everyone knows there may be some who will not make it to the next retreat.  So you hug as many of them as you can, tightly.  You try and gain new insight and information from the bereaved families.  Many still come to see children who remind them of their little ones that have gone.

The love between the children is amazing to watch. Here’s Knox getting a sweet kiss from his friend from Pennsylvania. Though the form of CS is milder,  this beautiful little girl on the right has Cockayne Syndrome.

The severity of the syndrome varies from child to child.  Here’s a photo of Amy (the Amy of Amy and Friends) and my Knox.  Both have CS but Amy has a milder form and Knox is quite severe.  Can you tell Knox gets a lot of love at the retreat?

It meant the world to me when I saw my blog was included on the donor board.

Thank you to each and every one of you who have purchased something from Knox’s little shop.  I send it on and it does make a difference!  I just recently listed some candy corn cards so check them out here.

Now this was really a thrill! I finally met my blogging friend, Hilary, from Positive Letters, in person!

She came with wonderful British souvenirs and post cards for us, as well as this gorgeous stamp.  This is as close to perfect as a gift can get! Many thanks, Hilary!

And then another surprise came!  Mrs. Beez came to visit and volunteer at the conference!   It was so enjoyable to meet you in person, Lisette! Knox enjoyed his extra hugs and especially loved your sparkly necklace.   I hope we can see you again and thank you for the tea and relish!  (Take a look at this gorgeous butterfly piece she recently posted!)

And then another friend popped by to meet us! Marg S. came and met Knox and I on Saturday afternoon and we had a very nice visit!

This generous soul took donations for Amy and Friends in lieu of gifts for her birthday!  Is that awesome or what?! It was wonderful to meet you, Marg, and I’m so glad you got to meet Knox and some of the CS family.  Hope to see you again!

Throughout the weekend there are many volunteers helping the children with fun activities, and then on Saturday night there’s a dinner and dance party featuring some talented and big-hearted entertainers

It’s a beautiful place to be.  People are not staring at Knox or any of the children because they look different.  All of the children are safe from teasing and ridicule.  All the children are loved and made to feel special.

Because they are.

We want to express our sincerests thanks to Amy and Friends for all they do for CS families around the globe. And to all the families we’ve met, we send our love and sincerest wishes for the happiest days possible.

Farewell lovely England, until we meet again!