Ten Years-What It Means

Roger Vol IAs 2018 ends and 2019 begins, a time for reflection is expected. We frequently look back on the year and look at the good, the bad, and lessons we may have learned. For CJSTUF, 2018 was another year of success. We served meals to over 10,000 patients, family members, and caregivers for the third year in a row. Our Meal Fairies program has inspired additional meal services by the Ronald McDonald House of Richmond as well as organizations that are serving meals at UVA Children’s Hospital. In fact, at least 5 days a week, families getting care for their children at UVA can now receive a meal free of charge. While CJSTUF is not providing all of these meals, we like to take a little bit of credit for the inspiration that brought such a program to the hospital in the first place.

D_CJButter_31910cmykIn addition to the reflection of the past year, my thoughts have been on another approaching milestone. 2019 will mark ten years since Charlotte’s diagnosis and treatment. By the end of 2009, we had reached what was the end of Charlotte’s life but only the beginning of the journey for CJSTUF.

What a journey it has been!

Before 2009, our experiences with hospitals had been limited to either my professional training as a speech language pathologist (very limited) or the occasional accident/illness; something that you experienced with your older relatives or very short trips to the ER. The idea of stopping everything for the life of your child for almost a year was something I could barely fathom. We lived the experience and survived with the help of an amazing network of friends and family.

Before 2009, my experience with nonprofits had been as an employee and a donor/supporter/volunteer. We have now lived the startup experience firsthand. We have learned many lessons; I pursued an additional graduate certificate in nonprofit management and participated in the Emerging Nonprofit Leaders Program. I have since sat on other boards and given advice to many people interested in starting up or managing their own nonprofit. Sometimes our seemingly contradictory advice is, “Don’t do it.” It’s hard work, it’s never-ending, and it’s not always the right way to go about changing the world. However, it gave our lives focus at a time when grief was overwhelming and overpowering. In some ways, I think CJSTUF gave me a way to power through my pain and I am grateful for that.

Before 2009, I had experienced grief and loss in many ways. I had lost a parent, all of my grandparents, and even some friends. None of this prepared me for the loss of my own child. I now understand the word anguish in a way that I never thought possible. I understand grief such that stories of tragedy, particularly the death of a child, can instantly bring me to tears. The grief journey has waxed and waned and we have spoken of it often. It flares from time to time and then it subsides. The grief is always there. I would not wish the pain on anyone. Knowing that we can use this pain to further some good in the world is a small relief, one that keeps me rolling out of bed each day.

2016-01-04-23-11-00So as 2019 begins, I look towards many anniversaries with mixed emotions. A decade is a significant milestone. We are proud of the many things that CJSTUF has done for families and we want this legacy to remain for decades to come. We will start the year with our annual #Light4CJSTUF on January 7. It is a day to pause and remember Charlotte’s death for what it means to us and what her legacy can mean to to others. Bringing light to a time of darkness is sometimes all we can do. It can be enough. As the year continues, there will be celebrations, fundraisers, and milestones, including the Thumbs Up Ball in February (do you have your tickets yet?). Most importantly, we will use the next two years to focus on CJSTUF’s legacy for decades to come. Stay tuned for some exciting developments in the life of our organization! We will have a lot to say!

For those of you who have been with us on this journey from the beginning, thank you for everything you have done. Your kindness and light in a time of darkness has been the foundation keeping Roger and me moving forward. For those of you just joining us on the journey, thanks for coming along! Just today, we received a donation from a parent whose child received meals from CJSTUF at UVA during their own medical journey two years ago. Their desire to give back is an expression of gratitude that we understand so well. May the light shine in us so that we may bring it to others in their time of darkness.

Thanks for being a part of the first ten years. 



Amazing Stories

Our Chick-fil-A Birthday Dinner

As you know, we marked Charlotte’s 7th birthday on Monday.  The day included laughter, tears, hugs, an honorary mention on WCVE, dinner at Chick-Fil-A, a chocolate milk toast, and a showing of Finding Nemo. Roger and I were touched by the sweet messages we received as well as the generous donations made to the foundation in her honor that day. 

On Friday morning, I turned to Roger and said, “Wow! It sure has been a long week. Monday seems like a long time ago.”  He agreed.  Between the emotional exhaustion at the beginning of the week, the Wine Down event on Wednesday in which we raised $1000 for CJSTUF (hurrah!), and the normal business of our jobs, it had proven to be a very long week, indeed.  

Then came Friday.  I ventured off to my job at the Dominion School and Roger had the opportunity to participate in the Moriah McNeil Celebrity Golf Classic to benefit ReeseStrong.  One of the generous patrons of the organization had bought an extra foursome and donated it for use by dads of pediatric cancer patients.  Roger joined Reese’s dad and a few other guys for a beautiful day on the links.  

Roger, Walter Klauer, & Emanuel McNeil

Moriah’s dad, Emanuel McNeil, is a former NFL football player. He lost his daughter Moriah to cancer in 2004 and organizes this charity golf tournament every year in her honor.  The proceeds benefit a different children’s charity annually.  With these connections, it made sense that quite a few NFL players would be hitting the links.  It wasn’t until Roger reached the tournament, however, that he realized some of these guys were the same football players who came and sang Frosty the Snowman to Charlotte on a hot summer day when we were holed up in the ASK clinic for a treatment in 2009.  The visit had been a huge hit with Charlotte and had even been featured on the CBS news (briefly).  As Roger talked about this with the football players, many of them mentioned remembering Charlotte.  Then one guy pulled out his phone and showed us this video.  

He has had this video on his phone since 2009.  Roger was floored! 

In the meantime, among my many meetings of the day, I was scheduled to interview a potential instructional assistant for the Dominion School.  The young lady arrived at the scheduled time and we began to talk about her work history and why she was seeking employment with us.  I asked her to say a little bit about why she liked her job and she told me this story. She works at Build-a-Bear. 

“I really love being able to see the happy faces on the children.  A few years ago, I had the opportunity to work with a family that came into our store.  The little girl was about 3 or 4 years old and she was sick.  She came into the store after hours with her best friend and together they made creations for her, her parents, and her best friend. We were so touched by this little girl and found out a few weeks later that she had passed away.  I still think about her a lot and how we were able to make her happy.”

Our creations from Build-a-Bear,
including Frosty the Bad-Ass

As I sat there listening to her story, I realized where this was going.  I was near tears as I listened to her accounting of our very own Build-a-Bear visit.  I was thinking, “Should I say something? Is that appropriate?” Finally, I realized I needed to tell her.  I said, “I hope this doesn’t upset you, but I need to let you know, that’s my daughter you’re talking about.” I pointed towards the picture of Charlotte on my desk and the girl’s jaw dropped to the floor.  She said, “Oh my goodness! That’s her! We have her picture in our office at the store and I still think about her and talk about her all the time!”  We both started crying.  

Eventually, we composed ourselves and carried on with the rest of the interview.  On my way home from work, I got a message from Roger that he had something interesting to tell me.  I told him that I had a great story for him as well.  We met up and recounted these stories to each other in disbelief and amazement.  

I don’t always believe in “signs” or messages, but perhaps these simple, touching stories delivered to both Roger and myself on the same day are a way of showing us that Charlotte continues to touch people’s lives as much in death as she did in life. Of course, I think of our girl every single day. But it warms my heart in unimaginable ways to realize that she had such a profound impact on people who are virtual strangers.  

That, my friends, is the best birthday present anyone could ask for.  Don’t you agree?

Remembering CJ

For anyone interested in helping us remember Charlotte on the day of her death, we are going to have a small get-together at our house at 1 PM. We will have some helium balloons to release with notes to CJ. You may bring your own balloons/notes as well (no mylar please).  Then we’ll have some fellowship time with coffee and hot cocoa/chocolate milk for all.  Anyone is welcome. There is an invitation on Facebook if you would like to RSVP

If you live far away and can not attend, you are welcome to remember Charlotte in your own way. Please feel free to share your remembrances on 1/7 on the CJSTUF facebook page or on our blog. We will set up a special page on January 6th and you will be able to add comments to that post with your memories of Charlotte or ways that you are remembering her that day.  

Thank you,

Rachel & Roger

“One G*# D*&#ed Chocolate Chip Cookie”

Or better yet, “That Damned Kiss.” – A Mighty Wind
Or slightly more diffused, “You know you’ve ruined it for me…” – Out Of Africa
We all have had events in our lives where one little detail eventually became more than just a detail in the overall fabric of our experience.  It morphed into an major element of the plot, influencing further development and screwing up your plan for where you thought you were going.  This butterfly did that to me:
A few days ago, Rachel came in the house and said, “Have you seen the new butterfly?”
We both went out and she showed me the purple butterfly that someone had covertly attached to Homer the Pine Tree overhanging CJ’s Butterfly Bush.  We occasionally find things on or around CJ left by people we didn’t see and they are always appreciated but I think I must have been in a certain frame of mind to receive this certain butterfly because it changed the course of my psyche.
Rachel and I had just come back from our vacation (it was fabulous, in case you hadn’t heard) and I wasn’t ready to get back into reality.  On top of that, I had been having lots of little “moments” that were weighing me down.  Moments brought on by the weirdest things.  Like hearing a song or being in a place where Charlotte had been. The bus was certainly back, parked squarely on my chest, and my “woe-is-me” song writing machine was picking up speed.  And a part of me was ready to stay on that path for a while. There’s value (at least to me) in feeling the pain.  At least when I feel the pain, I know I’m remembering her. (I hate “at leasts”)
And then I saw that damned butterfly.  It wasn’t like the weight was lifted or anything too dramatic like that but it reminded me that people are thinking of us, which is comforting, and that I need to get my head on straight.  It even altered the direction of one of the songs I had been working on for a long time.
The problem is that it was fixing to be a pretty good sad song before then.  Now it’s all confused and I may have to break it up into two different songs that sound a lot alike.
Be that as it may, the song writing machine (along with my attitude) has come out of its nose-dive and has leveled off for now.  The moments are still there, nothing has changed in that respect, but I’m at least able to deal with them for the time being.
Thanks to whoever placed that damned butterfly.
In other news, the Foundation is ending the year with both good and bad news.  The good news is that we were able to help 30 families, one way or another, to the tune of $14,000. That takes the total amount of aid since incorporation to around $27,000 in two years.  (We thought we were closer to $30K for a while but it still ain’t too shabby)
The bad news is that we still have 13 families on the waiting list.  That’s $6,500 if you want an amount.  We’re really hoping that some last minute fundraising opportunities will help narrow that gap.
One not-so-last-minute FUN-raiser is the Ukrop’s Monument Avenue 10K on March 31, 2012.  TEAM CJ will be in effect and there are different ways you can get involved:
1 – Join TEAM CJ, collect pledges, and run in the 10k.  If you commit to raising $500 or more, CJSTUF will give you a code to register for free!
2 – Go to MY fund raising page and make a pledge.  My goal for all of TEAM CJ is $10,000 but if I could do that personally, wouldn’t that be totally cool!?!  The Mother Runners are going to be involved somehow. We haven’t solidified details but there may be a pink running skirt involved! 🙂
3 – Be a cheer-er for TEAM CJ along the route.  We need spirit, we know we do! We need spirit, how about YOU!?!
By the way, there are new racing shirts (real running shirts!) for all Team CJ participants!
January will also be “Remember CJ Month” when participating stores will be donating up to 5% of sales for the month to CJSTUF.  Our first participant will be the Bed Corner in Stonewall Square in Mechanicsville.  Come buy a bed or mattress in January and help CJSTUF!
If you own a business or know of one that would be interested in participating, have them contact us asap.
I think that’s all for now.  I’m sure Rachel will be back on with something I’ve forgotten.
Bye for now,
p.s. If you want me to explain the chocolate chip cookie reference, please let me know.

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 hundreds…no, 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.


To all our local network:

Kathy Lesher, the social worker from Noah’s Children, suggested we have an event for children before Charlotte’s passing as a way for them to prepare for it and to say goodbye. There will probably be more than one and the first will be this Sunday, December 27th at 2pm. For want of a better title, I’m calling it, “Butterflyaway” and it will be short and simple. We’ll read the Very Hungry Caterpillar, do some butterfly arts and crafts in the art room, and then the kids can play in the gym for a while.

Charlotte will not be there which means either Rachel or I will not be there but the other one of us will be.

Kathy will also be available to answer anyone’s questions. She might also enlist the aid of an organization called Full Circle Grief Center.

This event is free and open to absolutely everyone. Please email me if you plan to attend. We will open the 4:00pm slot as well if there is signifigant interest. A third possible event could be Sat, Jan 2 at 5:00pm.

This is extremely short notice, I know, so I’m hoping I could talk everyone into spreading the word.

CJ is resting comfortably. There have been many, many wonderful readers through the house and she has been awake about half the time. We’ve moved her Dexamethosone back up to 3ml from 2ml to see if that will help her swallowing difficulties.

There is an accupressurist/accupuncturist coming over tomorrow who has been recommended by Dr. Anna. Her name is Elizabeth and she told me that she has worked with a patient with swallowing troubles before and has had significant but temporary success improving the patient’s ability to get food down. Temporary is all we need.

As I type this, I realize this is the anniversary of my Grandpa Homer’s death (Dec 23-This will probably post after midnight). This kind of stuff puts quite the surreal tint to the holidays, doesn’t it Gramses?