Sunday, February 20, 2011

70 Days and Counting

The Big Sur International Marathon is 70 days away. Gonna be rough. My knee is still healing and my miles are not increasing like they should be. My "spring" cold-thing and covering for sick employees at Romp n' Roll didn't help either. Well, since I already plan to finish dead last, I have nothing to worry about!

The temps are warming up in the mornings, though, so I'll get out more this week. I also went to see Dr. Anna for an adjustment and some electro-stim on the knee which helped. One funny thing is that I turned the electro-stim up so high that it gave me a blister on my leg. Felt kinda good, though.

The main reason I'm writing is to post a link to a story about the organization with which we've teamed in the Monterey area. The more I learn about the Children's Hospice and Palliative Care Coalition, the more I think we've made a good choice. The article definitely gave me a "moment" while reading in the living room tonight.

This is a group making a difference in families' lives and it's actually saving money in the surreal world of California economics.

On another note, if you're in the Richmond, VA area on Saturday, Feb 26, and you've been longing to get more involved with the Foundation, please come by our house at 9 Slash Ct. in Ashland at 4pm for the big "Volunteer Recruitment Event." There will be refreshments, productive assignments, and a dozen trained monkeys knitting humorous cummerbunds for all.

Ok, one of those things isn't true.

Last but not least, I now have my own FUN-raising page for Monument Ave 10K and Big Sur!!! Please click on the link, laugh at me in a pink skirt, and donate if you'd like.

Enjoy the end of winter and don't forget to hug your babies.

Thursday, February 17, 2011

It's a Kind Of Day

Hi all,
Just like the title says, (our Business Of The Month) is having an online event for CJSTUF today. If you go to their website and buy a KDF card, 40% of the sale will be donated to the Foundation.

Please "Like" them on Facebook if you are able.

Very special thanks to Heather for her generous support.

The planning for the CreatAThon project is progressing. We had a meeting last night at Positive Vibe Cafe and hashed out a few more good ideas. From what I understand, we're the only video based project which is kind of cool!

Gotta get some music composed...

Don't forget to hug your babies.

Sunday, February 13, 2011

Dream Repost From Facebook

(This is for those of you who don't do Facebook. For those who do, this may be a repeat for you.)

Here is a very vivid dream I had last night:

I was in a house that was mine but not one I’ve ever seen in real life, as far as I can tell. I remember bookshelves lining the wall with one end of the room slanting in on both sides to a doorway leading, I guess, to a hallway or something.

I remember seeing, out of the corner of my eye, a girl (presumably Charlotte even though in the dream she had already died) of about two or three years old with blonde curly locks wearing a blindingly white sweater, kind of like a shawl with sleeves, and off-white pants (the things that stick with you).

At first it was just a glimpse I was getting and every time I turned to see if it actually WAS Charlotte, she would disappear. This went on intermittently for quite a while (Weeks? Months, maybe?) until slowly, over time, the image/ghost/whatever stayed longer and longer until I could actually look at her directly without her disappearing. It was kind of hard to keep looking at her for any length of time because that sweater was REALLY bright; glowing almost.

She was always standing with her back to me, facing the bookshelves, as if she were looking for something to read (typical Charlotte). Unfortunately, she didn’t seem to be finding what she wanted. I was finally able to sit down on the floor next to her and get a good look at her. Once I saw her face, I could tell it was definitely Charlotte’s ghost.

There was no trace of any sickness but she wasn’t happy. I tried to help her pick a book but nothing was right. I finally asked her what she wanted (up to this point I hadn’t actually tried to talk to her). I don’t remember her saying it but I knew she wanted a “beach bucket.” The typical-looking pink one I brought to her wasn’t the right one (don’t ask me where I got it, I have no idea).

“I want the little green half-bucket with the froggie on it.” She said, speaking out loud for the first time. Again, in reality, I don’t ever remember her having one like that but in the dream it had existed. I had to tell her it had been given away to another child like most of her toys.

She was a little bit sad about that although she seemed to accept it and it brought her away from the bookshelf where, I now realized, her toys used to be. She moved over to a table on the other side of the room and got under it, still looking unsatisfied with how things were working out.

Finally I asked her, “Why are you here?” She said she wanted to see us again, before...

And then, I’m not sure how, I knew that she had been reborn somewhere else in the world. It was in a third world or developing country (somewhere in Asia, I think) and the child was in a coma. The problem was that before she took her place as the new child, she had to finish whatever it was she needed to finish with us. Then the new baby would be able to go on with its journey.

As silly as it may sound, I think finding out what happened to that little green half-bucket with the froggie on it was the excuse she needed to come see us one last time.

I guess it was what she needed because she was suddenly gone and that was the end of the dream.

I don’t, for a minute, believe that this is true at all but it’s a good story and it made me think of her all day today; hence my “purple-y” mood on Facebook. I even wore purple all day.

So hug your babies, and think purple-y thoughts!

Saturday, February 12, 2011

Supporting a family when a child dies

Roger and I attended a beautiful memorial reception today for another brave cancer warrior.  Little Lois lost the battle with Leukemia.  She was a little over three years of age. 

I realized that this was the first memorial that I attended for another child since Charlotte died last year.  The event was positive, bright, filled with children, and filled with smiles.  I hope that it was all Lois's family wanted it to be. 

At times like this, I am reminded of how difficult it can be to support those who are grieving.  When a child dies, there are many who are caught in the wake of loss.  It is hard to know what to say, how to say it, or whether to say anything at all. 

Are there rules? Well, yes and no.  Since each person grieves in their own way, I am not sure if there is always a right or wrong answer to some questions.  That being said, my experience has caused me to realize that there are some phrases that jar a grieving parent like fingernails on a chalkboard.  If you are supporting someone who is grieving, here's some food for thought:

Ban the phrase "at least" from your vocabulary.  In the midst of acute grief, there is no bright side to things.  This is a time to allow the family their sadness.  At least she didn't suffer or At least you have other children or At least you can still have children.  NOT HELPFUL.  At the moment, life sucks.  in fact, it's going to suck for a while. It's ok to acknowledge it.

Be cautious in your use of religious metaphors or talk of heaven.  This is probably very individual, but please remember that not everyone shares the same beliefs in life, death, heaven, or an afterlife.  Some parents take serious offense to the idea of their child as "an angel in heaven" because that is not how they imagine them to be after death.  Further, the phrase know that she is in a better place is particularly bothersome.  In my mind, there is no better place for Charlotte to be than with me.  Here on Earth.  It is not necessarily comforting (even if I believe in heaven and the afterlife) to think that she is somewhere else.  In fact, sometimes the use of that phrase is extremely painful to the person who is grieving. 

Don't ask about their plans (or lack thereof) to have more children. If this information is not offered by the parent directly, it's not up for discussion. You may wonder how they feel but for most parents, it's a difficult and possibly painful topic.  This is true whether the child's loss was one week ago or three years ago.  Know that if you ask this question, you are treading on dangerous ground.

Sometimes there are no words. We struggle in these situations to find the right words but sometimes, there is nothing to say. There are no answers. We don't know the reasons why. Sometimes the best thing you can do is just sit with, cry with, laugh with, or hug the grieving person.  It's ok if you don't have all the answers. You can be a friend just by letting them know that you are there.

Remember that grief has no timetable. Everyone grieves on their own schedule. There is no designated time when a person will be over it. Grief ebbs and flows. It tends to fade over time. Some people get stuck and may need some additional support to approach a sense of "normal" but be careful not to project your feelings or expectations on another person's process grieving a loss. 

The last thing I will say is that the most important factor in the process a grieving family endures is the support the community can offer them. I think often of the phrase, "Our thoughts and prayers are with you." If I had a nickel for every time I heard that phrase or saw it written in a card or email, I could finance a new wing of the hospital.  Individually, the phrase carried no weight.  It was just something to fill the void when no other words seemed right.  On the other hand, when I would read comments on our blog or Facebook pages or look at the piles and piles of cards that had been sent from all over the world, I felt the impact of that phrase.  Our thoughts and prayers are with you. Can you imagine? There were, thousands,...of individuals thinking of us, sending positive vibes, and praying for us.  It created an energy force that was strong and comforting at the same time.  It was like a huge, soft blanket on which we could break the freefall that had become our lives.  And for that I continue to be grateful.

Monday, February 7, 2011

More information on our Biz of the Month for February

During the month of February, KidsDineFree is helping support CJSTUF.
Buy a KidsDineFree card on their website on the following dates:
Wednesday, February 9th
Thursday, February 17th
Monday, February 28th
40% of the card sales will be given to CJSTUF

OR you can visit the Johnny Rockets in Chesterfield on Saturday, February 19th to buy your card in person.

When you have a KidsDineFree card, your child eats for FREE at hundreds of restaurants every time you dine (not just on special "kids eat free" days). Cards are available for Richmond, Williamsburg, Northern Virginia, and South Florida.

Stay tuned to our Facebook page and the Biz of the Month Page on our website for more information on special KidsDineFree events during February.

PS: Did you receive our February Newsletter? If not, go to our website and sign up for our email newsletter list! (or check your spam filters)

Sunday, February 6, 2011

How We Help: A Family Profile

Sickle cell disease is a life threatening genetic disorder that causes chronic pain, delayed growth, ulcers, jaundice, and other medical issues. Ongoing treatments are necessary and can range from dialysis, blood transfusions, medical management through steroids and pain medications, and (when possible) bone marrow transplants. While symptoms and treatment can vary across patients, it is a disease that requires lifelong management and frequent medical care.

The Price Family knows the reality of Sickle Cell disease only too well. Thirteen year old Nile (one of a set of triplets) has battled the disease since birth. Last year, Nile was fortunate to receive a bone marrow transplant that has cured his sickle cell disease and placed him in remission; however, he still faces chronic health challenges on a daily basis. His four-year-old sister Olivia also has the disease.

The Price family has struggled to balance their days between hospital visits and a "normal" life. They have faced the emotional, physical, and financial challenges that this disease brings to every family it impacts. Thanks to CJSTUF, the family was able to receive two Financial Assistance Grants in 2010: one for Nile and one for Olivia. The funds helped the family with their ongoing medical and household expenses.

The Price family helps us recognize that Every Day is a Bonus.

As we move into 2011, our focus as a charitable foundation is shifting from building the foundations of an organization to ongoing sustainability. To continue our mission, we need your help. CJSTUF has a goal to raise $50,000 in individual and corporate gifts during 2011. Every contribution is valuable. If you believe in the mission of CJSTUF, please visit our website and pledge your support through our NEW donation page. You can make a one-time donation or pledge an ongoing contribution in any amount.

PS: Did you receive our February Newsletter? If not, go to our website and sign up for our email newsletter list! (or check your spam filters) 

Wednesday, February 2, 2011

So much for the quiet winter!

So this will only be a very short post because we want to get some time sensitive info out there.

Mark your calendars because will be partnering with CJ's Thumb's Up Foundation on February 5. Please visit River City Diner located at 803 East Parham Road on February 5 from 11:00 am - 1:00 pm. Present you KDF card and you'll receive a FREE milkshake. Don't have a KDF card, no worries, you can buy one at River City Diner that day. Plus 40% of the proceeds from KDF will be given to CJSTUF!

There are also many other events in the pipeline now and things are a-heatin' up! Literally, it's like 90 degrees out there. Ok, maybe 68 but it's still really warm comparatively.