3.08.2015

The planet spun around again

At karate earlier this week, a young man mentioned it was Dr. Suess's birthday.  The sensei wondered how old Dr. Suess was, and another little boy yelled "He's dead!"  The children laughed, and then I heard Tucker say But you can still have birthdays when you're dead.  His comment was not acknowledged with more than a raised eyebrow as the group stood for ready stance, but I heard him, and I agree.

We learned the baby was a girl the last week of October.  I remember coming in to my classroom the day after Halloween to a desk covered in Reese Cups.  The kids knew chocolate and peanut butter were my favorite, and each of them shared at least one with me.  The loot should have lasted through winter break, but I may have taken eating for two a little too seriously.

Mom, what if a scientist discovers a medicine for Celia's disease?  Could we send it on a balloon up to Heaven's house and then she could take it and float back down?

Our house was under construction at the same time she was.  The carpenter began in the fall, and said it could be finished before the holidays, drywall, hardwood, a whole new bathroom, but his estimate was poor.  Celia was due on March 3rd, and I was on my hands and knees pulling up painters tape and vacuuming debris on February 28th. At the time, it felt like the worst thing I could imagine, bringing home a baby to a dusty, unfinished house.  We didn’t even have a rug on the floor.  Since then I’ve learned there is so much that is so worse.

We celebrated four March sevenths with her, and as many without.  It's my birthday too, and at this point I am very practiced at wishing.  But for every birthday candle and for every shooting star, for every blown dandelion and heads-up penny over the past few years, I have wished for increasingly detailed versions of the very same things: that she were not dead, that we'd had more time with her.  That there were a cure for Batten Disease and that we could have another healthy daughter.  That nothing horrible will ever happen to her brothers.
There is no room for nasty surprises from the universe with that degree of specificity.  Except I am also old enough to know that one bad thing cannot keep another from happening.

some photos via @photodespoina and @ alisowalke

Scientists say "helper's high" - that feeling you get when you do something nice for someone else - is a real thing. So instead of just wishing for good things, I tried to make some of my own this week.  I shipped a care package to a friend up north who might need a pick-me-up in the days ahead, and covered my countertop with hot glue trying to reconstruct fifty silk flowers for another friend who has a fast approaching hairband deadline.  We made music with the God's Treasures class at Sunday school and we made oatmeal cookies to share with neighbors.  
And because OF COURSE you can still have birthdays when you're dead, the boys and I sprinkled donuts across town in celebration of what would have been their sister's eighth.  (There are sprinkles all over my car to prove it, and sprinkles on our kitchen floor that might point to where at least one donut from each of the eight boxes ended up...)  We left a note about Celia with the donuts, reminding folks that every day is an opportunity to do good and to show kindness.  We asked them to pass it along, to sprinkle it around like confetti. Everyone needs a little to land in their hair, to get caught on their clothes and settle in their hearts.  Maybe you'll carry some with you this week too, make a mess with it, spread it out and share it with her in mind?

Mom, I've got a good idea of how we could see Celia again.  We could just all die.

I stand silent witness by my son, the one with the ideas and the questions, learning how to honor life and how to ponder death.  Tucker turned Celia into a sister, they shared a special bond and a tangle of DNA.  He shared knock knock jokes and showed sincere compassion and she gave him whatever attention she had and all the love she could.  The planet spins and spins and I stand with them and wonder, will she become a myth to her brothers, something larger and smaller than who she really was?

We do not invite silence in place of expressions of joy or pain.  We just keep talking about her.  Some people think we're crazy, but I believe the craziest thing we could do is nothing.

*****
The next Celia's Walk/Battling Batten Disease 5K Run has been scheduled for Sunday, November 8, 2015!  Please consider saving the date.  More details to follow.

6 comments:

Andrea Jene said...

Sending love your way. We will sprinkle some kindness down here in the south. Little A and I have been keeping Celia's memory alive. She talks about Celia as if they have met, like a friend she has had at least a dozen play dates with. Thank you so much for sharing her with all of us. We love you all so very much. #fbaten for sure.

Andy and Jenni said...

Thank you, Andrea. I love that Addison knows Celia's name 😊 Can you imagine if our little redheads had gotten to meet and play?! Appreciate you letting us know you're thinking of her this March...

Mike Smith said...

on the seventh i wore one of Celia T-shirts, the one with the flaming red hair.Some thanks it's Samantha,but i tell them that Celia and Sam could be twins in so many ways.Both with red unmanageable curly hair,a smile that melts your heart and a rare disease / condition. Samantha and Michael Smith

Andy and Jenni said...

Mike, I didn't realize you read here - thank you for letting us know you do, and for keeping Celia in mind this week. Our thoughts are often with you and Sam... You're right about the girls' tangled manes, and their melty smiles :)

Maya's Curls said...

So glad I clicked on your blog tonight...your words are so real and beautiful. You share so much joy, pureness and love in these words no matter how broken your heart is. I have tears in my eyes thinking of Celia and how she touched so many of our lives. I hope her little fairy garden will bring beautiful butterflies to visit this Spring and Summer. So much love to you and your sweet family <3! So glad we have been able to really get to know each other on a deeper level. I enjoy our visits very much friend! xoxo!

Tiffany Townsend said...

I felt the kindness for sure...and will sprinkle some of my own for your sweet girl.