Bluesy Carol of the Day

Scalped

I haven't written one of my crazy, being the mother of a kid with special needs kind of posts in a while, but don't think that each and every day doesn't have its treasures. And I'm being a bit sarcastic, here, but above all, honest. So, this afternoon was a day that warmed my heart because when Sophie came home from school, a girl who just moved in around the corner called and said that she wanted to come over and visit Sophie. I've known this girl and her mother and sister for years, but they only recently moved into my neighborhood. Let me back up and say that other than the children who go to school with her, Sophie has no real friends. This social isolation is not something that I've neglected or something quickly re mediated if I only worked on it -- I believe that it's a common problem for those of us with nonverbal children who also have pretty severe developmental and cognitive disabilities. It's the biggest heart breaker of all, actually, greater maybe than the dozens of seizures a day or the relentless grind of diapering, feeding, bathing and dressing an adolescent. When I do think of it, I push it to the back of my mind so as not to overwhelm my heart.

But I digress.

This neighborhood girl -- Janie -- has taken a liking to Sophie in what I would call a true, nurturing sense. She is a quirky girl, dramatic and precocious and open. She is matter of fact with Sophie: she says Hello! and remarks on what Sophie might be wearing. She talks TO Sophie, rather than ABOUT her. When I told her that Sophie has so few friends and how grateful I was that she was visiting, Janie said, Well, Sophie, I am your friend! And she sat down on the floor next to her and picked up the various toys that Sophie likes to manipulate and mouth and played with her, chattering on like girls do. I stood in the doorway, in awe, with tears in my eyes. And then I went to get the camera.

Like I said, my heart was warmed and my tears ran fast and all was good as I hummed at the stove, making grilled cheese sandwiches with pears and garlic french fries while my daughter and her friend, HER FRIEND!!!, were playing in her room.

At some point, The Husband came home early so that I could leave and go to a school meeting for Henry (the child who will soon be in middle school, my God!) and while I was explaining that my grilled cheese sandwiches with pear were almost done and don't forget to give Sophie her medicine and Janie is here and she is visiting and playing with Sophie! and then Janie walked down the hall to say hello to The Husband and while they were chatting and I was wrapping a scarf around my neck since it's getting cold out here in LaLa Land, I heard a small cry, a choked cry that didn't sound like a seizure cry but it sounded like something, so I ran back to Sophie's room and found her, head bowed, standing right by the door. And when I tried to open the door, a door that is cut off halfway so that we can keep it closed and her inside but still see her, well, her head was bowed and she was making these strange cries because a chunk of her hair was wrapped around the little old-fashioned lock at the top of the door. Sophie doesn't use her hands and I'm sure had twisted and turned and bobbed her head until the hair was really stuck and it took me a stifled frenzied moment to untangle it and her from the door, but when I did I realized

the potential.

What if she'd had a seizure and fallen? Her hair, maybe her whole scalp would have come off! I said, almost hysterically, to The Husband while Janie looked on saucer-eyed.

She might have been scalped! I cried.

But she wasn't, the Husband said.

And I know he's right. Except that I'm convinced the things I worry about are not the things that happen. If something bad happens, it's going to surprise me. And if something good happens, that surprises me, too.

Sophie made a new friend today and she almost got scalped.

Car talk, or where it's evident that my children have no sense of the value of money

1962 Ferrari 330 TRI/LM Testa Rossa went under the hammer for £4.6 million at an auction in Italy. 

Henry: When I'm old enough and have a lot of money, I'm going to get a Ferrari.

Oliver: You can't get a Ferrari; it costs about a million dollars.

Henry: Mom, how much does a Ferrari cost?

Me: Um, I'm not sure but I think it costs a couple of hundred thousand dollars.

Henry: Whoa. Then if I can't get that, I'll get a Porsche.

Angels and archangels may have gathered there

Some hate him, some love him. I love him. And I love this sad and melancholy song.

Another Giveaway

A friend of mine has taken it upon herself to begin writing, illustrating, photographing and even publishing some very cool children's books. The first one is now out and available at Amazon. The writer's name is Megan Hirsch and you can see her website HERE. The first book in the series is called How to Hold a Pencil, and it's a wonderfully designed, fun little book that I feel certain young children will enjoy. I also imagine children with developmental disabilities, autism and/or fine motor issues might benefit from this book. Megan plans on doing a whole series, and I look forward to each one!

I have one copy to give away, so please leave a comment if you'd like it, and I will pick a name randomly on Friday, December 11th.

Waiting and the Miscellaneous and the Carol of the Day

I clicked over to Deb's blog Talk at the Table and was overwhelmed. Each day of this month, through the Feast of Epiphany on January 6th, she is sharing a journey of intentional Hope for Advent. Look for this star if you click over to her blog. 

As I go through my day today, and hopefully onward, I hope to incorporate some of the things she is doing and suggesting in an attempt to shape and feel and keep the true meaning of Christmas and this season. I hope that you might as well.

On my way to the boys' school this morning, it was raining! Raining! Finally, it's raining, a beautiful, soft and gray rain. For those of you who live in rainy climes, I know this is nothing to get excited about, but for those of us who live in the perpetual 70 degrees and sunny, well, we lift up our faces and let it wash down. I had to be at the boys' school early this morning. As room parent for Oliver, my third grader's class, I had to collect a single flower and handmade card that each student was bringing in to celebrate the teacher aide's birthday. I brought along a vase, and while we scurried through the rain to the school, Oliver held it out in front of him, his yellow daisies he'd picked from our garden bobbing. He had his hood up and I walked just behind him, but close enough to see his upturned profile. I wish that I had taken a picture such was his simple happiness. His mouth was upturned in a huge smile and his arms with the vase of flowers reached straight out into the rain.

What are you doing, Oliver? Henry asked in a big-brother, scornful way.

I'm catching the rain! It's so good for the flowers! Oliver cried out. And something about his profile, his two big front teeth smiling, those outstretched arms and the vase of golden flowers made me want to cry out in gratitude.

For the Carol of the Day, I'll post Away in a Manger, sung by Alison Krauss and Mindy Smith. It sounds childlike to me, in keeping with my morning and my memory of singing this song with my preschool class in a pageant long ago.

50,000

50,000 King Penguins

Without even realizing it, my blog hit the 50,000 hit mark this week. I just can't believe that within one year, that many people pushed the button and clicked on my little blog. It seems fitting during this waiting period of advent to express my thanks for all the support I've gotten this past year from each of you. Blogging is one part addiction but three parts grace. I mean that. While it has consumed me, periodically, it has also given me new friends, new ideas, spiritual support, encouragement, laughter and even literal gifts.

My community has expanded tenfold and I can honestly say that above all, the isolation I felt in that very special world of raising a child with disabilities is completely gone. Completely! Can you even begin to understand how profound that is?

Writing almost daily in this blog has also sparked that deepest, most essential creative spirit within. I feel as if the muscle, so necessary to exercise in order to write, has grown stronger, more limber, more expressive.

And while writing is also a necessity to me, something that I'd do lonely and cooped up in my room, in front of this screen, having you as the "audience" has been invaluable. Thank you.

And now, before I really start to wax silly, I'll sign off with today's Carol of the Day. I went to an Episcopal prep school and every Christmas the choir did Lessons and Carols. The first carol always began with one soprano in the back of the darkened church singing this. It still sends chills up my spine.

Sing It

Just in case you're new to my blog, I'm posting a Carol a Day through the month of December.

The Christmas Blues

Sunrise

The morning dawns not with the sun but with the steady, dull blink of the blue alarm clock.

Your hair looks funny, he says, digging his two front teeth into an orange wedge.

They're here! he shouts when the guy who drives the carpool pulls up.

He scrambles to unwrap a chocolate kiss from the advent calendar while pushing his folder into his bag.

They run out the door yelling good-bye!

I sit with her in her room as she goes over, once, twice, three, seventy-five times, the same thing over and over each morning not like a blink but more like the sunrise, inexorable in its regularity.

When I can't look anymore, when my patience wears thin and I would rather push the day back and down back into darkness I rise and walk away from her and through the house, stepping over the trail and detritus of normalcy. The tiny playmobil sword, the errant sock in the doorway, the plastic boxers askew on the dining room table, exhausted from the bout, the air they breathe.

It seems ridiculous

to post this but more ridiculous to not post this. Who can resist the buttery voice, even when it comes out of an elevator sound system? I certainly can't, and listening to this carol always makes me think of my early childhood and my parents and our generous, magical Christmases.

All I Want for Christmas

My friend over at Criticlasm reminded me of this British World War II motto.

What with the math homework (fractions!), the reading plot flow homework, the seizures, the seizures, the seizures, I'm thinking tonight that what I really want for Christmas is this saying micro chipped into my brain.

Close your eyes for the carol of the day

and just listen to the queen of soul sing. (And don't pay attention to the cheesy video...)

It's Time for a Carol a Day

In keeping with my one year old tradition, I'll be posting a Carol a Day during the month of December (with all my apologies to all those who can't abide the season). Unfortunately, I am unable to post the inimitable Tom Jones dancing to Winter Wonderland this year due to some sort of copyright infringement. Dang -- it was really sensational. But Glen Campbell might fit the bill to inaugurate this august blog tradition.


My memories of Glen Campbell include dancing to him with my mother when I came home from kindergarten. She would put on Galveston and we'd dance while eating graham crackers with cream cheese and jelly. Here he is singing Pretty Paper.