6.03.2016

awareness (don't not say a word)

For a few years now, no one at our house has needed a bedtime lullaby.
Parenting at the beginning again feels a little like going through an old file cabinet and realizing most of the documents are irrelevant.  I recently pulled out a dusty little gem I used to sing to Celia, polishing off, for her smallest brother, the nonsense lyrics that used to lull her to dreams.

And if that diamond ring don't shine, mama's gonna buy you a porcupine.
I appreciate the opportunity to talk about her.
It’s the only way left for me to mother her, really.
But what more is there to say?  I feel like a record with a cracked seam, skipping again and again, replaying the same dull melancholy notes.
I loved her.  I miss her.  I desperately wish she were here.
I don’t know how we’ve gone on without her.  I’m sorry we’ve gone on without her.  I'm so glad we get to go on with her brothers.

The neurologist laid out several scenarios, listing disorders that were astronomically rare.
We learned that lightning and rattlesnakes and bad luck and gavels are not the only things that strike.   Batten disease does too.
We chose not to pursue anything that might compromise her comfort, even if it may have extended her time with us.  Not everyone greeted this decision with compassion and acceptance.  Shrink wrapped inside their own impenetrable logic, not everyone could.

And if that porcupine don't prick, mama’s gonna buy you a golfing stick.

Last weekend a man handed me a half sheet of paper at the parade and said, "Thanks for coming out today."  I glanced at it -- Love. Hope. Cure. -- and then back up at him, and wanted to say Wait, I had a daughter... 
Instead I hid tears behind sunglasses, remembering when her life and our happiness were held together by what felt like cobwebs.

And if that golfing stick don't hit, mama's gonna buy you a catcher's mitt.

Parenting a terminally ill child exerts unfathomable weight.  Imagine losing someone you would sell your own soul to save.
There was guilt over feeling anxious for a glimpse of what life would be like without her, as hollow as we feared it to be.  There was joy around looking forward to seeing who her siblings would become.  Now, watching them and remembering her, we ride a little seesaw of grief.

And if that catcher's mitt don't catch, mama's gonna buy you a dog to fetch.

She smiled, occasionally, but she was doomed.  She would die and we would witness her death.
What we could not buy her was a cure.
Though there can be no real meaning to come from it, we continue to feel desperate that her life should matter.  We were dedicated to helping her die with dignity, and we promised to live big because she would not get to.

And if that dog can't fetch a ball, mama's gonna buy you a shopping mall.

She lost all her words, couldn't say a thing.
You don't realize how language actually interferes with communication until it’s missing, how it can get in the way like an overdominant sense. You have to pay so much more attention to everything else when you can't use words.

Hush little babydon't say a word.

Words are not always the most reliable thing.  And while the song promises all manner of rewards for being quiet, we must remain advocates.  Currently, in the treatment against Batten, there is no place for the scalpel, and so words continue to be one of the only tools.  Families like ours persistently beg, with the very strong hope that someday, very soon, these pleas to support science will be irrelevant, these awareness weekends will grow dusty in the archives.

12 comments:

rht said...

Ahhh -- that day at Inniswoods.
I had a good visit with our friend, Joan Schmidt, yesterday. Looking at some new photograph collections hanging on her wall, I noticed that one is all about Celia. There is a close-up featuring Celia's beautiful smile and copper curls, one of Celia sitting up on Andy's shoulders, one of your family at Celia's Walk about six years ago.
And now there are promising drug trials to fight Batten disease happening right here in Columbus and someone has unknowingly handed you a flyer promoting Batten awareness. None of that makes up for our loss, but I see reason for hope and evidence that Celia's life continues to matter.

Sara Sheets said...

I see her on my prayer corner wall every day...

Kristy G said...

Sending you love, because that's all I can do right now. Thank you for sharing your feelings.

Juliet Carey said...

I needed to read this today...I love you so much! Tears are a flowing...my sweet friend! She will always be only mind and in my heart.

Juliet Carey said...

on my mind...

Jeanie said...

Lovely. Have you ever considered writing a book about it? You should.

The Wendels said...

Hmmmm Jeanie's words sound remarkably familiar....
Love you all!

The Wendels said...

Hmmmm Jeanie's words sound remarkably familiar....
Love you all!

Jean Margaret Walker said...

Words can't express.

Jean Margaret Walker said...

Words can't express.

Marla Taviano said...

I'm so so sorry about your Celia. She is beautiful.

Susan Kadlac said...

Jenni, You are such an amazing author! I love that you sing "Hush Little Baby" to your boys. I have been singing that song for almost 40 years, first to our children and now to our grandchildren. First verse as it was written, second verse made up!!

Celia is always with you. I think Hank looks a lot like her with a sweet face!

Sending an extra dose of thoughtfulness!