It’s not all rainbows adorable bald heads

It’s not all rainbows adorable bald heads

I should write something. No, not because I think you expect me to. Because I want to. Several times a day I have thought-about Sam, about cancer, about siblings, about grief-and I think, “I should write that down.” Writing helps me to process my thoughts and emotions, and I want to share this with you. I don’t want to hold anything back. I want you to know how crappy it is live without Sam. I also want to remember. I want you to remember. If we stop thinking, talking, writing about him, then was he ever really here?

It’s been almost 2 weeks since I put my thoughts on paper-that’s how I used to explain writing to my students. Whether they were in 1st grade or 6th grade, they were always afraid to write. “Don’t stress out. It’s just thoughts on paper,” I would tell them. There’s always time later to go back, reread, fix, adjust, perfect. “Just get your ideas out before you forget them.”

Here’s one idea spinning in my head today-for the past 6 months, really: Have you ever heard the term, “Rainbow Baby?” I heard it for the first time this past summer, when Sam was on hospice. I stumbled across an on-line magazine, Still Standing, full of articles about child/baby/pregnancy loss written by bereaved parents. I was lead there by Angela Miller, of A Bed For My Heart, author of You Are the Mother of All Mothers. I was comforted by most of the writing. I felt less alone in reading about other parents’ experiences. I felt more confident that I would indeed survive the death of my son because these other parents were surviving. Parents said they not only did they survive, but they were thriving even through their grief, and finding joy in the darkness. I held onto that. I still do.

Anyway, back to this idea of a Rainbow Baby. A Rainbow Baby is the baby one has after experiencing pregnancy loss.


After Abby and before Sam there was another baby. He died inside of me at 16 weeks. We didn’t name him because he was miscarried, not stillborn, and therefore there was no death certificate. But he was.

And then there was Sam. Our miracle baby. Our longed for, wished for, prayed for Rainbow Baby.

Our Rainbow Baby died. I hate that term, Rainbow Baby. I can’t be alone in that. What about the moms and dads who are never able to bring a baby into the world alive? I almost can’t click on the link in my Facebook newsfeed for Still Standing because of that stupid term (unless the article is by Angela Miller, of course). I can’t stand to read about how someone is “expecting a Rainbow Baby,” as if everything is going to perfect from now on. Bullshit. I want to sit that glowing pregnant mama down and gently, taking her hands in mine, break the sad news to her. Just because you bring a baby alive into this world, doesn’t mean it will always be healthy and alive. Diseases happen. People happen. Freak accidents happen. Be aware that you are vulnerable to child loss for as long as you breathe.

Just this morning a friend (a really good, fierce, prickly on the outside, soft on the inside friend) told me that someone had asked her why she works so hard and spends so much time raising awareness about childhood cancer and organizing fundraisers for childhood cancer research when none of her children are sick. “Why do you care,” they asked? She was shocked by this question. What’s the answer? Can we only care about something that affects us directly? If that’s true, why then do we give to the Red Cross to help hurricane victims when a hurricane hasn’t touched our home? Why do we give to the food bank when we are not hungry? Why do we donate coats and blankets when we are not cold?

I’m sure there are many reasons why we care and therefore give of our time and things and money, but the one reason that stands out to me is that we feel vulnerable. We see ourselves in that parent who can’t afford a new, bigger coat for their child this winter. I think we are aware on some level that this could be us.

Childhood cancer is worse than natural or economic disasters. You can’t control for it by carefully choosing your place of residence away from regions prone to childhood cancer. You can’t avoid it by taking a second job to ensure financial stability to ward off cancer. Cancer doesn’t befall children of any particular ethnicity. Cancer doesn’t give a shit how much money you make, where you’re from, what religion you practice, or how educated you are.

You care because you are human. I’m not sure if I believe in G-d anymore, but thank G-d for that. If you didn’t care things would be awfully lonely for the Jeffers family and all families touched (crushed, unraveled) by cancer. One of the reasons, really the biggest reason, we are surviving this is because of our community-our in-real-life and our virtual community.

You know what’s coming, right? I’m going to ask you for even more help.

Over the summer, I discovered this group, 46 Mommas, that raises money for St. Baldrick’s, a childhood cancer foundation that funds grants for research, by shaving their heads at an annual Shave for the Brave event. I knew then that whether Sam survived or not, I would be a part of that group. To shave my head with such a large group I felt would have such a large impact, financially and in raising awareness. Then there’s the symbolism of it. For some moms it’s solidarity with their child who lost their hair to cancer treatments. But Sam never went bald, so for me it’s more about standing before you with nothing to hide.

The shave event is in Boston on July 27th, so there’s plenty of time to share this with your friends and family, and plenty of time to save your pennies to make a donation. Please share this link to my fundraising page: You can also make a donation by phone: (888) 899‑2253. You can even mail a donation to St. Baldrick’s: St. Baldrick’s Foundation, 1333 S. Mayflower Avenue, Suite 400, Monrovia, CA 91016. Please include my participant number: 668136.

Even though it’s not your child and hopefully never will be your child, please care.

  • Ellen Hollander-Sande
    Posted at 21:21h, 23 January

    Hi. I found your blog through Phyllis Sommer.

    I love this photo of your big kids holding little Sammy. And the honesty in your writing. I looked back on some of the other posts…. sadly I can relate. My son Caleb died on September 3, at age 6.

    I wonder if people give to other causes but not pediatric cancer BECAUSE it is so scary that it could happen to anyone, you know?

  • Sabrina
    Posted at 21:33h, 23 January

    This comment has been removed by the author.

  • Sabrina
    Posted at 21:33h, 23 January

    I'm so sorry, Ellen. I agree-It is fear. How do we get around their fear?

  • Ellen Hollander-Sande
    Posted at 01:15h, 24 January

    I think by doing exactly what we're doing. Telling our truth. Only when it's really someone you know – or someone you feel like you know – does it get past that barrier.

    I used to walk past a tree that had a photo and the story of a girl who had died of cancer. My urge to look and to read it battled with my urge to look away. It was too scary to really let it in. Recently I've tried to find that tree but I haven't been able to. Now of course I want to see, I want to read. I wonder what happened, if the family moved away, or if they just took down the memorial picture? Sometimes I think I must be remembering something wrong… but one day I searched thoroughly enough that if it were still there I would have seen it.

  • Susannah Seefeldt
    Posted at 19:55h, 24 January

    Ellen I am so glad you found this, because I just clicked on it from a friend of mine and I was going to send it to you! xo

  • Ellen Hollander-Sande
    Posted at 19:58h, 24 January

    Thanks <3.

  • Taxmom
    Posted at 13:05h, 25 January

    Ugh, rainbow baby, ugh. My older one (whom you know) would fit that definition, but ugh. Love the photo, and how the look on your older son's face is the same one he has now. Your dtr has a lovely smile like sunshine, but has lost the unalloyed sweetness that shows up in this photo (2 recent band trips where I'm monitoring the mood in my section of the band bus is where I've had a chance to observe).

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