the sister above

Dear Celia,

The trick of you is that most of the time you let us forget. Not you, our girl, but the sadness that comes with constant missing.
The fact of you - your life, your soul, your death - is always with me. My body remembers you head down in my pelvis, curled up in the crook of my arm, piggy-ing upon my back. And the pain in my right hip persists, years after the heft of you has gone.

You are the sister above. You are, to your brothers, larger than life. The oldest demonstrates a signature commitment to live with an awareness of you in the world. Your middle brother loves to look at photographs, and always remembers, especially when we miscount. Even the littlest, the one you may have met in the haze for just a minute, knows your name. He talks about you when we slip a hand-me-down shirt over his head and rub lavender lotion on his skin.

We make believe, imagining you here. What color might you have wanted to paint your room? The absence of you seems to have moved in with us.
And instead of remembering, when I think backward now, I'm afraid it feels more like imagining too. I am able to part the mist of memory enough to glimpse the time before you were gone, but some of what should be the most vivid moments, the ones in which you're crawling around eating Cheerios from the floor, are so far back in some foggy temporal region, I wonder if they're real? Time and memory do the fox trot through my mind, fast fast slow, quick quick. You would be almost eleven years old now.

I wonder if God allows a dead girl glances from heaven. Did you see me at church last Sunday, sitting in the same front pew I did the day we said goodbye? I thought of you there, remembering the way I was hugged so many times six years ago I left Broad Street smelling like the perfume counter at Nordstrom. You were loved, and are missed, by so many. I'm still not sure how I feel about church, but sometimes I do pray, mostly because it feels like a better bet than not praying, however long the odds may be. You know about odds, baby. I'm sorry you do.

I wish I could catch a glimpse of you today, nearly a young woman. I wish I could know all the tiny things that would make you who you were meant to be, your quirks and your favorites.
I miss you warm in my arms. I miss smelling your hair like a hound dog. I miss the way you tilted your head. I miss having a daughter. I miss what might've been. I cannot afford to spend all my emotional capital being sad. I miss you, and I move on.

Except most of the time your name is so close to the tip of my tongue. You changed my life. The effects carry me through the years even as the daily maelstrom of current events roil friends around me. I may have been depressed, spending time with you as you faded. But I also became more patient, less anxious, more capable of loving, less afraid. And I think I might still be merely scratching the surface of understanding what your death means for me.

Love you to the moon.

*Batten Disease is not just going to fall gently off our planet. (Unfortunately neither is the president.)
Laura Edwards knows that care is not a spectator sport. Activated by a strong sense of personal responsibility and the deep bond of sibling love, Laura has battled Batten Disease since the day her little sister was diagnosed in 2006. Laura writes and runs and speaks in an effort to raise awareness and funds for research. She will run in Sedona on February 3 with a picture of Celia in her pocket. Learn more about her "all 50 states" effort and donate to help cover the creation of the first Standard of Care for infantile Batten Disease. Our family might have benefitted significantly from such a roadmap, which should take some of the guesswork out of disease management and allow healthcare providers to offer improved quality of life for patients and their families.

Learn more, and donate directly here:


Maya's Curls said...

I still look at the gorgeous thank you card with her beautiful red curls and remember how she has changed my life. The tears that fall down my cheeks right now are for all the times I wish she was running and playing with her brothers, for the what if’s and the sister and daughter that is missed beyond what words can describe. I’m so grateful to have held her, kissed her cheeks, and to have you all in my life. I love you so very much! Today I donate in her honor and memory <3!

Laura King Edwards said...

Thank you for this beautiful post, and for allowing me the honor of running for Celia, in Sedona and always.

rht said...

Jenni, did you know that today is National Kiss A Ginger day?
Your writing captures so many of the feelings I share... sometimes I linger in the girls' clothing department and mentally shop for Celia, wondering which outfit she would pick and whether "soft" would be as important to her as it was to you.
Thank you, Laura, for all that you do -- and for taking Celia to beautiful Sedona!

Aunt Linda said...

I carry her with me in my phone's folder named "Celia" and show her to people often as I'm telling her story...seldom without tears.

mike4sam95@yahoo,com said...

the first time i ever met other parents with special/ rare child was also the first time i met you, you gave me Tucker to hold he was six months old i did not understand until after you left that it was Celia and she looks like Samantha. same red curly flaming hair that would never stay in place for long.i ask Celia to please help take care of Sam, hope that's ok with you. my eye and pictures may fade but not are love for children.

L Bova said...

Jenni, thank you for sharing your heart so openly in your writing. Celia is forever in my memory. I think of her often. I see her beauty in each of your boys and know there is an ever present ache the magnitude I can only imagine. Thinking of you & miss seeing you all. I'm so glad you are all together in your new home.

Jane Lowery said...

Jenni, ͏Thank you for sharing your heart. You do it so well. I read this, tears rolling down my face, wishing I was there to give you a giant hug. Your writing allows me just a glimpse of your pain. I cannot even fathom how deep that pain engulfs you. Your SC family
may be far away but our love for you and your precious family is right there. You are dearly loved!

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