Wednesday, July 9, 2014

Sophelia Bedelia, Bananarama Peelya, and a Charlotte's Web Side Effects Update

You hear a lot about the travails of being Sophie or of being her mother or siblings. You rarely hear about the plain old life of Sophie (other than seizures!), so I thought I would take a few photos of her this afternoon when she got off the bus from her summer school program, and I brought her back to her room. The Soph's universe is pretty contained, very padded and conducive to rest and relaxation with a sprinkling of things with which she loves to mess around. I told you the other day that she is free to roam around in her room, and other than occasionally banging her head on the only strip of wood not padded, she is safe to be alone. Lately, when she gets home in the early afternoon, she plays for a few minutes on the floor and then makes her way to the bed to take a nap. 

I realized today that she totally and completely positions herself into an appropriate sleeping position for really the first time in her life.  Another side effect of cannabis, I suppose! Increased purposeful activity! I took a few photos to share with you in sequence. I suppose a video would be more informational, but I started snapping these photos as they happened and think it's a pretty effective way of illustrating a small but huge change in how Sophie is living her life. They're a study of How Sophie Does It Now That She Doesn't Have Seizures All the Time.





(there's the strip of wood that she likes to bang her head on!)



Sophie's motor deficits include ineffective use of her arms and hands, but she has abs of steel, a core strength that probably rivals Madonna's. She maneuvers her way on to her bed in a way that belies motor planning disabilities, too.












14 comments:

Christy Shake said...

wow! just wow!

Lisa Lilienthal said...

And I'm pretty sure in one of those pictures she is giving you the teenager stink eye for taking pictures :). She and Cooper have a similar sleeping position in the "curled up in a ball" pose.

Ms. Moon said...

I love how her limbs eventually unfold. She is a beautiful flower.

Denise Emanuel Clemen said...

Wow. I'm impressed that she, thanks to relief from the seizures, manages all this. I wonder what else you will discover on the list of good side effects.

Anonymous said...

She is beyond precious. You and Your family have given her so much and now you can watch her become the child/woman she was meant to be.

Mari Woodward said...
This comment has been removed by the author.
liv said...

I watched it several times in a very quick scroll and it was almost like a video.

It was so different to watch Soph really move. Taking her from static to animated helps me to absorb more who she really is. It would be fantastic to see a video. Just this slow moving series of photos was exciting......do a video !!!

Steve Reed said...

I love her peace sign shirt! That photo of her lying on the bed, looking up at the camera, reminds me of the immortal words of the Chinese medicine doctor: "She in there. She know."

Vesuvius At Home said...

Sort of like watching Sophie yoga. Sophie the yogi. Her room is so soft and lovely. I can always feel your immense love for her just by seeing pictures of her room.

beth coyote said...

Mermaids everywhere! And hooray for cannabis. Washington State now has two weed stores where citizens can buy recreational grass.

And the bill boards are springing up-Drive high, get a DUI. (how they figure out you're high is beyond me.)

SO glad we're finally moving on with this issue. About time. And so glad for Sophie to have some relief.

Leslie said...

Checking in, belatedly as usual, these days. I'm always so happy to see a post like this :)

michelle said...

Yes. Sophie is definitely a yogini

xo

ilga rauchut said...

I especially enjoyed reading/seeing your blog today because we got to see a small bit of Sophie's world.
And I share your feelings about the vastness of space, comfort from the moon. I see it many nights from my computer room which has a wall of windows.

Theresa said...

I had that same thought about "she in there, she know."
In that pic when she is looking at us, I really feel her heart deeply, and I feel that she really knows. She knows so much.
I feel like she is looking right at you and telling you, "Mom, I know who you are in the deepest core of your being, and that I am so loved. Thank you Mom."

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