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. 

 

 

It’s Better to Light One Candle

It’s the week of CJ’s death anniversary. I’ve had some thoughts simmering in my head for a few weeks now but can’t seem to write them all down. Let’s see how this goes…

Last year at this time, I reflected upon the 5 years that had passed since Charlotte died and CJSTUF was founded. It was touching to see how many people remembered Charlotte by making a #light4CJSTUF. 

Many people know the proverb, “It is better to light one candle than to curse the darkness.”

2016-01-04-23-11-00
Photo credit: Sara Holloway

When I reach this time of year, it feels easy to curse the darkness; to curl up into a hole with a warm blanket and hide….with the necessary provisions of dark chocolate and wine, of course. Part of it is the cold weather but most of it is memories from 2009 that reach their peak around the Christmas holidays and settle in my chest right around January 1. The darkness won for quite a few years. The holidays were miserable. Now they’re merely tolerable.

I think the light is winning. Perhaps it’s because my attention is diverted. I wrote about 18 months ago on my personal blog, “the busy-ness of child rearing can sometimes be just enough to pull you out of the black hole of grief.” Kiddo is definitely a big part of finding the light. However, I also think that the light is winning because of YOU. The Network has always been there. From day one. It has never faltered. It never went away. The light that is The Network keeps burning. In my mind, it’s like the votive candles in a cathedral. Whenever you enter a Catholic church, you will see the rows of votives. Some are lit; others are not. But it’s always enough. Just when you think that sacred space will be lost to the darkness, someone comes along and offers up another prayer and a candle. They bring the light. That’s how The Network is for us.

So on the sixth anniversary of Charlotte’s death, let me say again: Thank You!

Thank you for allowing us to give back to our community through your gifts to CJSTUF.

Thank you for your moral support, your cheers from the sidelines, and your sympathetic tears.

Thank you for keeping your lights shining.

Let’s make #Light4CJSTUF an annual event. Any time this week, but particularly on January 7, light a candle, take a picture, and post it to social media with the hashtag #light4cjstuf. We’re on Facebook, Twitter, and Instagram but you can post anywhere you like. If you’re on Twitter or Instagram, you can tag @cjstuf as well.

By lighting a candle, you are honoring Charlotte’s memory.

By lighting a candle, you are honoring the memory of any child who has died and supporting grieving families.

By lighting a candle, you are giving hope to a family whose child requires constant medical care and frequent hospitalization.

By lighting a candle, you are sharing the mission of CJSTUF with others.

Thank you for being a part of the light.

–Rachel Reynolds
CJSTUF Co-Founder
Mom to CJ

Five Years: What it means

Five years.  A minor milestone kind of year.  Not usually worthy of a class reunion but to a five-year old kid, the fifth birthday is a biggie.  I still remember mine.

A few days after Charlotte Jennie’s death on January 7, 2010 from a Primitive Neuroectodermal Tumor (PNET), we received a letter in the mail from the State Corporation Commission notifying us that CJ’s Thumbs Up Foundation had been officially and legally incorporated.

The date of official incorporation was January 6, 2010.  The day before Charlotte died.

I HATE that CJSTUF exists.  I HATE that CJSTUF HAS to exist.  I HATE the reason we started down this path in the first place.  If I think about how much I hate all that for too long, that’s when my steering wheel begins to take a beating.

Some of the yummy food delivered by the Meal Fairies.
Some of the yummy food delivered by the Meal Fairies.

But without CJSTUF, all that support that was directed at us would have drifted away after Charlotte died.  The 180 grants we’ve sent out would not have helped our families at VCU and UVA Health Systems in their times of need.  We wouldn’t have served 10,000+ meals to the families and caregivers on the 7th floor of Children’s Hospital of Richmond and Ronald McDonald House Charities of Richmond.  We wouldn’t have been able to offer volunteer opportunities to children and adults alike.

We wouldn’t have been able to make a few unbearable situations just a little more bearable.

On top of all that, we wouldn’t have been able to meet the legion of amazing people who have come into our lives:  Our continuously energetic Board Of Directors, the other families with whom we have commiserated and from whom we’ve received such love, and the people–friend, family, and stranger alike–who have entrusted us with their hard-earned resources so that we may be able to continue the forward momentum of this great coping mechanism that we call “CJSTUF.”

At the risk of embarrassing her, we must hold high upon a pedestal our Managing Director, Michelle Alford, and her wonderful family. When we put out the call for applications to fill the newly created position of “Foundation Facilitator,” we had no earthly idea that out of the many talented and highly qualified applicants, we’d be introduced to the amazing Michelle Alford and her family.  Not only did she become an indispensable employee (who totally kicks heiney at what she does) but her entire family is now on the short list of who we call “close and trusted friends.”  And what with the impending adoption of our Kiddo, it’s so nice to have a “best friend” for her in the form of their eldest daughter.

Just a few of the many grants we have sent to families over the last five years.
Just a few of the many grants we have sent to families over the last five years.

Michelle has been a huge part of the growth and success of the Foundation and we hope she will choose to continue her journey with us for the foreseeable future.

Now, none of this will bring Charlotte Jennie back to us and this week is understandably one of great pain and heartache, but we really do find comfort in the fact that we are able to continue her legacy in the form of CJSTUF and that so many people seem to be rooting for us.

We are very thankful for all of those who will be lighting luminaries in Charlotte’s memory on January 7.  Let those lights continue to blaze in your hearts whenever the night seems darkest.

#Light4CJSTUF

Roger Reynolds
CJSTUF Director of Programs
CJ’s Daddy