Love Meeting Ataxia

Its off-balance always, swaying and arched, touching, groping,

for stability,

a moment where movement

meets stillness,

and they slow dance

for

a

beat

before spiraling and waving and wiggling apart.

 

Ataxia a rare type of CP.

Cerebral palsy.

When brain and body act like disgruntled dancers

sending cross signals

across the floor.

 

Picture those people you've seen who walk funny,

with a drunken swagger,

magnified.

 

Or those children you saw load the smaller bus,

Hand-hidden giggles,

an elbow to a friend,

head nods,

laughter,

"Can you imagine...?"

Wide eyes.

Closed.

 

Open.

 

I lie down next to Elias,

atop of his seven hand-made blankets,

gifts from his circle,

larger than the moon.

 

He turns on his turtle

moves the light closer to the wall

so the blue stars shrink

and cluster.

 

"They're having a meeting."

"What are they meeting about?"

"They're just talking."

"What are they talking about?"

"Ohhhh..." Elias holds the note of the word, carrying it higher,

with each turn of his head,

"About loving each other annnd...." he sings,

"Caring."

 

I tossle his sand-colored hair, squeeze him close.

He presses the Turtle's button,

"Now the green stars are having a meeting."

"What are they meeting about?"

"About how their brains work."

 

We always talk about love and caring.

But brains?

And how they work?

 

Elias lies on his stomach, raised up on his elbows,

his head turning from side to side,

eyes everywhere

but on mine,

"And thinking annnnnnnd..."

 

"....caring."

 

"Do you know how much I love you?' I ask.

"How much?" he giggles, our words like old jeans.

"All the way to the stars and back."

"Whoa that's far!" he says,

as he always does.

 

He pushes his face into mine so our noses kiss.

We lay like this for

three breaths.

 

Then more wiggles and waves, while his eyes sway for mine,

"I love you all the way to Cape Cod and back," he says.

"Oh thats far!"

 

I kiss my son's head.

And rise.

 

Comments

[Mom]

Beautiful!!! I like to Cape Cod and back! You have an amazing son!!

[fleming]

Isn't it amazing how much we will never know about our children even when it seems like we are sharing the same breath? Never a snowflake the same, nor a person.

[Linda]

Beautiful, Christy... draws me right in!

Best of everything to you and yours in the new year.

[Niksmom]

Gorgeous. Simply gorgeous. Happy new year to you all.

[Noel Dennehy]

You do so touch me with your gift of words and the pictures they paint. Happy New Year to you all.

[susanna eve]

there is a true sweetness to little ones:) sometimes we are consumed with fear for their future and worry about their disabilities and we forget to enjoy them.

[Michel Beaudet]

ataxia Is not a rare form of CP.
What is ataxia?
Ataxia is a symptom, not a specific disease or diagnosis. Ataxia means clumsiness, or loss of coordination. Ataxia may affect the fingers and hands, the arms or legs, the body, speech or eye movements. This loss of coordination may be caused by a number of different medical or neurologic conditions; for this reason, it is important that a person with ataxia seek medical attention to determine the underlying cause of the symptom and to get the appropriate treatment.
Hereditary ataxia's (more than 50) are diseases:
Disease characteristics:
The hereditary ataxias are a group of genetic disorders characterized by slowly progressive incoordination of gait and often associated with poor coordination of hands, speech, and eye movements. Frequently, atrophy of the cerebellum occurs. The hereditary ataxias are categorized by mode of inheritance and causative gene or chromosomal locus.

Hi,

My name is Michel Beaudet, I'm 49, have FA and live in Quebec, Canada.
I'm sending this message to invite people to join a list for those with ataxia. The list is called Internaf and there's also a website full of info at http://internaf.org

International Network of Ataxia Friends is a mailing list for ataxia patients and family/friends which serves as a support group and information exchange vehicle. There are currently over 700 subscribers from more than 40 countries worldwide.
Subscriptions to INTERNAF is free.
For info on how to subscribe, go see, http://internaf.org/network/services.html or
for email only access click here and send: [email protected] or
for full yahoogroups features access go to http://groups.yahoo.com/group/internaf/join

Bye
ps: Don't hesitate to email me if you have questions about internaf
--
Michel Beaudet
[email protected]
Internaf - INTERnational Network of Ataxia Friends
http://pages.infinit.net/macmike
http://groups.yahoo.com/group/internaf
http://www.internaf.org