Tag Archives: Caring for Caemon

Thirty Days of Caemon–Day 26: Caemon and Carol

Today’s post comes from our very dear friend Carol. She was a special friend to Caemon and an incredible support to Jodi and I both in the hospital and after Caemon died. Her presence during Caemon’s treatment and her countless efforts to help support our family in innumerable ways during the course of Caemon’s treatment will always be a treasured gift to us. Below, our beloved friend shares Caemon’s impacts on her.

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I met Caemon before he was born – really, before he even was conceived. Jodi and Timaree wanted so much to be parents, were so sure that this was their path, and so dedicated to making it happen. Their child was a tangible presence before he arrived on Earth.

I was overwhelmed with joy when they shared their news. Timaree was pregnant and the embodiment of Mother, and Jodi equally diligent and dedicated to being Mama. I remember the day they showed me his room, which also revealed his name and its meaning. C A E M O N was spelled out in colorful wooden letters, and a large stuffed crocodile was waiting for him.

When he was born, I visited them at the hospital and got to hold him when he was barely 24 hours old. I never dreamed that just three years later the four of us would again be sitting together in a hospital room.

Croc snuggling with our special friend, Carol.I  am one of the lucky ones that knew Caemon. I have more treasured memories than I can list here: making cakes for all three of his birthdays; walking along with him in a stroller sucking my finger when he was teething; playing in his room on what turned out to be his last day at home; sharing a special crystal just before his transplant; a magical connection while napping with him just days before he died.  The last treats I baked for him were cream cheese brownies. He loved them. I promised to make them again when he finished his treatment and felt well enough to eat.

When Caemon was diagnosed with JMML, I knew I would be IMG_0073showing up in some big way for this journey. I was so grateful to be able to help: I created his Facebook page, did fundraising, and spent time at the hospital for several hours every week. Those visits were precious and also could be very intense. While I found myself rising to the challenge of this, I was astounded at what I witnessed in Timaree and Jodi. My experience was the tiniest sliver of what they were going through. I am still in awe of the tremendous love that fueled them through more trials on every level than I can begin to describe or imagine. To be able to give even a small amount of support was humbling. They are a testament to the power of unwavering love.

I received so much during this time. Not only from Jodi, Timaree, and Caemon, but from new friendships, relationships that deepened, and the experience of spectacular loving kindness that flowed with beauty and force from all directions. People are capable of such extraordinary love and generosity, and it seems we are just waiting for an opportunity to show that.

My spiritual beliefs include the idea that the Universe has a bigger plan, that we are all connected, and that no matter what happens, there is purpose and choice.  Caemon’s illness and death tested me. I was furious when he died. Why did he have to suffer so much and die so young? Why was his incredible potential snuffed out? Why did his parents, who wanted him more than can be measured and did everything to deserve a happy ending, have to endure this grief? It was so incredibly unfair. But in the end, I still believe in a loving Source and a choice made by our souls as part of a much bigger picture than this one life on Earth. It doesn’t make his absence less painful. But I know that Caemon’s soul still shines, that his short life had and continues to have a great impact on so many, and that because of what happened, more people were transformed without ever meeting him than maybe would have been had he lived much longer. This helps give me perspective and some peace.  In spite of how I still feel about this outcome, my love for and trust in something bigger than us remains strong. The incredible courage of his soul to come to Earth, knowing what was in store, tells me he knew it was worth it. Yes, I wish Caemon were still here. I wish I were making him birthday cakes and cream cheese brownies. I wish his moms didn’t have to live with this gaping hole in their hearts. And I also know his life had a purpose that continues to unfold through his soul, his legacy, and through those of us who are better for having been touched by him.

Recently I had a dream about Caemon. I was in the bottom part of a split-level room, and he came over to me. It felt so lovely to hold him. He spoke to me in a child’s voice that gradually became more articulate and mature. While I don’t remember his words, the memory in my body is of wisdom and comfort.

And then he had to go. He climbed up to the level above me and scampered off with a couple of other children. In my dream, I was okay with that.

CarolandCaemon1

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Thirty Days of Caemon–Day 23: C is for Community

CaemonCroc2Before Caemon’s diagnosis, our little family’s community circle was fairly small. We had close family, a few new friends and colleagues, and a number of friends hours away. As fairly recent transplants to our city, we were still finding our tribe. When Caemon’s illness hit and we learned how very sick he was, we were certain that it was going to sink us. We had health insurance, but this meant Jodi had to continue working, and it wasn’t going to cover everything. We didn’t know how we would keep our residence, how we would afford traveling to and from the city, eating out for every meal, managing all the daily expenses of living in the hospital. But more than that, we didn’t know how we would make it through emotionally. How does one handle day after day in the hospital, the very lonely road of being a parent of a child with cancer?

Within just a day or two of his diagnosis, all of these uncertainties were put to rest.

On the first day of Caemon’s diagnosis, my sister started us a Caring Bridge site, and our friend Carol set up our Facebook presence “Caring for Caemon.” We shared the news with family, with friends from our moms’ group, even with my mom blogger community, and suddenly offers for help and messages of support were overflowing our inboxes and phones. A blogger friend took over my blog for a time, leaving announcements there. She communicated with my sister who communicated with Carol, and they all coordinated to set up fundraising and news dissemination and support. Our moms’ group made up a schedule for caring for our house and cats, and just like that, we had little to worry about but our son.

And for nearly six months, that community support just kept growing. Our neighbors kept our yard up. The circle of moms did our laundry, cleaned our house, cared for our cats. Blogger friends started a t-shirt fundraiser. Carol put together a wine country gift basket raffle. The moms organized a huge event, raising money and celebrating us. Donations came in daily to help us stay afloat such that I was able to take leave from work. Messages of support from family, friends, and strangers popped up in our inboxes on Facebook. A few people set up regular visits to keep us company, to give us respite. An engine company from the San Francisco Fire Department, one of whom is a close friend of my brother’s, came to see Caemon with gifts and donations and words of encouragement. Our local fire department dropped off presents, even brought their engines over for Caemon’s third—and last—birthday celebration.

To list every kind thing that happened to us just in that first ten days of learning our son had a life-threatening disease could take me days. To list the acts of kindness and compassion that came in the coming months, even in the last two years, would take weeks, months. The picture is clear though: from our son’s illness, a community of compassion sprung up, and it grew, and it grew.

To say that this has been humbling is an understatement. I never imagined that over a thousand people would subscribe to a blog about my son, that over two thousand people would follow a Facebook page dedicated to him. And I never imagined what those people—most of whom I’ve never met—might do. From buying t-shirts and making donations to help us out to posting photographs of appliances and lit candles and sunrises to keep our spirits up, sending words of hope and inspiration, and later, when Caemon died, message after message after message of heartbreak and condolence. Members of our community helped our Leukemia and Lymphoma Society Light the Night team raise thousands of dollars and continue to donate to our St. Baldrick’s fundraising efforts; they have donated hundreds of books to our C is for Crocodile book drive; they have given blood and signed up to be bone marrow donors. At least one member of our community has become a bone marrow donor. Our community raised money for a bench for Caemon, and that same community sends photos of their children visiting the bench. This community wears their “Taking a CHOMP out of leukemia” shirts with pride and meet one another in unexpected places—as far away as Brooklyn.

And our community has come together to help other families fighting the battle with pediatric cancer, making donations, offering support, spreading compassion.

And do you know, our community continues to grow? New people join the Facebook page every week. New people follow the blog every day—people who learn of Caemon’s story and go on to think a little differently about their own lives and what they bring to the world, people who remember our golden-haired boy and keep his legacy alive in so many ways.

This community with its remarkable wingspan has held our family up during the most difficult time in our lives, and it just continues to give and give and give. For our little boy with his tight circle of friends and family to draw thousands of people together for good is nothing short of beautiful, and a simple “thank you” will never be enough to express the gratitude we feel for all of you who are the living, breathing envoys of Caemon’s legacy.