Walking For the Mermaid

On October 17, Jude and I will be joining his Cub Scout Pack in the Epilepsy Freedom Walk at the Rose Bowl.

Our pack's participation in the walk is in support of my friend and fellow blogger (and fellow Cub Scout Pack mom) Elizabeth Aquino, whose lovely fifteen-year-old daughter, Sophie suffers from epilepsy. In her wonderful blog, a moon, worn as if it had been a shell , Elizabeth often recounts her trials and pains and joys of raising a severely disabled child, along with her two darling non-disabled sons.

Many of you already follow Elizabeth, but for those of you who don't, she's a beautiful writer, whose blog is poetic, artistic, touching, funny, painful, eloquent, outspoken and eye-opening.

Sophie's disabilities are profound. Her specific diagnosis is "refractory seizures of unknown origin", which basically means that no one knows why she is the way she is, and no one knows what to do to help her. The bottom line is that for the last 15 years, Sophie has suffered daily from multiple seizures. She must be fed and bathed and dressed and kept clean. She is unable to walk without assistance, and has never uttered a word.

For those of us with healthy children, Elizabeth's experience is frightening beyond imagination. Phrases like "there but for the grace of God go I" come to mind. When I read her stories, I frequently feel the need to drop to my knees and thank God for my healthy little boy. Luckily, Elizabeth is blessed with amazing strength and incredible humor. And really, if you knew her in person you'd know she's hysterically funny!

Recently, Elizabeth posted this poem. Which I think speaks volumes about their daily struggle...

What Does It Mean?

Sophie slept most of the morning, peacefully.
I spoke on the phone with several people because it was Saturday.
Sophie is doing much better, I said.
I knocked wood three times each time.
Sophie woke up and ate some lunch.
I dressed Sophie and she reached toward my face.
Her eyes seem larger, more intent, when she doesn't have seizures.
She hasn't had a seizure in days and days.
I did one of those email prayer chains recently -- the kind where good things happen on the fourth day.
You won't believe it, it says.
I'm not counting, actually.
I put Sophie in her stroller and we started to walk down the street.
I saw my neighbor, who has successfully finished chemo for advanced ovarian cancer.
I asked her how she was, and she said good and then knocked her forehead three times.
We chatted and caught up.
I told her that Sophie was trending better, that she wasn't having seizures.
I did not knock wood.
Sophie had a huge seizure in her stroller, under the waving trees.
What does it mean?
I was dusting in my room, and a small thin bowl that holds some jewelry, casual, tipped over.
The necklaces and rings fell to the floor in a neat heap.
I bent down to retrieve them and heard Sophie -- a whimper.
I went to her room.
She was having a seizure, on the floor.
What does it mean?
Yesterday, I thought maybe they had stopped forever.
Today, a sigh.
Hope follows hope
Knock three times
Pray

Please, PLEASE, support our Cub Scout pack's efforts by GIVING to the Epilepsy Walk. You can follow the link here to my individual webpage where you can make your donation. Monies raised go toward services, education, advocacy and research.  I've set a modest goal. Please help me reach it. Even $5 or $10 will make a difference.

Thank you SO much! I thank you, Elizabeth thanks you and Sophie, the mermaid, thanks you.

Comments

[Mama Badger]

I'm so glad for Elizabeth and Sophie that they had those good days all in a row. It's the spaces in between that give us all hope. Thanks for speaking for the kids that can't speak for themselves.

[Sprite's Keeper]

Beautiful girl, beautiful words, beautiful cause. Knocking three times for Sophie.

[Jan]

What Mama Badger said.

[Elizabeth]

What can I say? Thank you, thank you, thank you! You are a beautiful friend --

[only a movie]

I love Elizabeth's blog. What a good friend you are.
Will click through soon for your your walk. And loving that photo of Elizabeth's family.
xo

[Aimee @ In THIS Life]

Gretchen, so beautiful, thank you for sharing! I posted the link to your donation page on Facebook.