Wednesday, February 10, 2010


I have been putting off this particular post far too long. Those of you who know me in real life already know the heart-breaking story I need to tell, but if you happen to follow my blog without that real-life connection, you have been left waiting.

How I wish I had a happy ending for you. But I don't.

Every time I sit down to type it, I am paralyzed by the enormity of the situation. How can the beauty of a child's life be captured in a blog post? How can grief be expressed in html code and jpegs? It can't, of course. It's absurd.

But here's the thing: the internet is what brought us together in the first place. Though Rachel and I never met face-to-face, my life was greatly impacted by that intangible connection I felt to her and to her mom. Our relationship wasn't just meaningless type floating back and forth through modems and cables. It was real. It was significant.


When my son was diagnosed with microcephaly, I turned to the internet. That is where I found the most information and the most support; it was where the true experts were -- other parents. An entire community is gathered here, full of information, stories, pictures, acceptance, help, encouragement, humor, wisdom, support. In the hundreds of online voices, certain ones began to stick out to me. They were the ones that I could identify with most closely -- whether from shared experience, compatible perspectives, similar frustrations, parallel goals, or even sanity-saving humor. I found this common ground with Rachel's mom.

Our two kids had many similarities. They were both physically active, spirited, independent, challenging, charming, loving little rascals that had continued to surprise the experts and shatter predictions. We commiserated over the never-ending messes and frustration of challenging behaviors, and cheered together over milestones met & skills achieved. We laughed about the humorous moments, and warmed at the gentle ones.

Rachel was several years older than Max, so in many ways I viewed her as his role model. None of the textbooks or doctors or specialists could predict Max's future, but I saw a new potential path by looking at Rachel. In her, I caught glimpses of what he might look like in 2-3 years' time. Her astounding success with her talker, with letters and spelling, with problem-solving, with cleverness & humor -- it all helped me to believe that every bit of it was possible. That we needed to keep trying, keep working, keep believing the best, keep expecting more.

And Rachel's mom inspired me, too. She made me feel less alone on this journey. She "got" me. She could hear my deepest fears and darkest thoughts, yet always managed to revel in the mystery, and consistently remained her daughter's number one fan. She reminded me to embrace the magic.


The other reason this post is so hard to type is because it's really not my story to share. I feel like I am trespassing on sacred ground.

I am hesitant, knowing that Rachel's story is far deeper than I can post here, and far larger than the small points of overlap with mine. I write this out of a desire to proclaim her bright, shining existence and unforgettable spark. I write this to acknowledge the impact she had on me. I write this to remember.

Rachel left this world just as she once entered it -- with her parents by her side, in a hospital room filled with boundless, endless love.

Her funeral was heart-breaking and beautiful, filled with moments of laughter and rivers of tears, abundant love and wrenching grief. I carried away with me a sense of comfort that is created when shattered hearts are bonded together with the glue of community, soothed with the balm of shared love and the gentle wrappings of memory. I also carried away with me a continuing ache for her family members, who are now forced to redefine themselves, to find a way to carry on, to thrive even in the face of overwhelming grief. A piece of my heart remains with them still, as I long to ease their pain.

There is a large Rachel-sized hole in the world. She leaves behind two younger brothers, her devoted parents, and numerous friends and relatives, neighbors and classmates, teachers and students, doctors and therapists, supporters and admirers -- young and old, near and far, past and present. The number of people whose lives have been touched by this one amazing girl, and forever changed as a result, is inspiring. She brought seemingly disparate lives together. She made all of us become better people. She created an amazing community, for herself and for us, and her memory lives on in our hearts.


Nan said... said it all perfectly. Absolutely perfectly. I would never think this was not your story to tell or that you were overstepping your bounds. This whole internet world has created amazing new connections and possibilities. And in that world, Rachel became part of our family, a family that reached out to all corners of the US and brought an amazing group of moms and kids together. To acknowledge that and to honor her memory and to share the grief we the arena that brought us together is more than fitting and appropriate. Thank you so much for putting a voice to all I felt. Lisa would be honored as and she DID get each other. You were one of her greatest sources of support with your understanding of Rachel's needs. Your words are a beautiful tribute to an amazing little girl. How can that be wrong?

Anonymous said...

I am a writing professor in Kansas and a friend of Julie's mother. What I know is that Julie's tribute allows me on this morning of sunshine on Ash Wednesday in Kansas to recognize the sacred in Rachel's existence and her mother's care, the grace which comes with human connection in this life--and writing allows us to know of the goodness harbored in human existence in a dark winter. I love this poem from Jane Hirschfield's Lives of the Heart which reminds us that "hope is the hardest love we carry"--

Hope and Love

All winter
the blue heron
slept among the horses.
I do not know
the custom of herons,
do not know
if the solitary habit
is their way,
or if he listened for
some missing one--
not knowing even
that was what he did--
in the blowing
sounds in the dark.
I know that
hope is the hardest
love we carry.
He slept
with his long neck
folded, like a letter
put away.

Thank you, Julie, and Rachel's mother. Raylene

Anonymous said...

I am in tears... love Rachel, love Lisa, love YOU. Thank you for the beautiful tribute to Rachel. I think of her every day & miss her so much.

SO thankful for the Mole Moms & the intense bond we have.

MUCH LOVE... xoxoox Gwen

Jujyfruit said...

Raylene, thanks for your comment. There truly is a grace in human connection, and your kind words remind us all yet again. I will pass them on. Also, just had to say that it seems so fitting that you referred to the sunshine as you wrote -- Rachel's nickname was "Sunshine" and her parents are creating a foundation in her honor that is called "Scatter Sunshine." Thanks for helping to scatter it.