Saturday, March 5, 2011

A story for Saturday

Go ahead and grab a seat, 'cause this one is a rambling..

As some of you may or may not know, my daughter, Seraphina, did not come into this world easily.  We had a pretty traumatic childbirth experience, which caused her to sustain brain damage (specifically in the basal ganglia area of the brain).  I don't even really like typing those words. Brain damage.  Sometimes it is hard to believe that because she appears so "normal" in so many aspects.  She laughs hysterically, she reaches out and grabs the cats tail, she gets an ear-to-ear grin when daddy gets home and reaches her arms out for him.  But she also can't sit up, crawl, stand, walk, hold her own bottle, say any sort of discernible words (other than constant babbling)..all of which are milestones that she should have reached by now.  We started her in an early intervention program when she was just a newborn and I am so grateful we have the resources available to us that we do.  She has physical therapy once a week (which she hates) and water therapy once a week (which she absolutely loves).
Quite honestly, despite having therapies and such for her, I try not to think about it.  It pains me to think about, to talk about it.  To think of my daughter as any different than any other child.  To think of the difficulties that she may have growing up.  It breaks my heart.  So, I just don't think about it.  I go through the routines that we need to go through and when I see other toddlers her age, I try to tune them out because I can not bare to inevitably "compare" them to my child and wonder what we are both missing out on (and believe me, I hate myself for doing's not fair to my child, or the child that I am comparing her to). 
A "normal" childhood, full of playgrounds and running. 
Some days are easier than others.
But, I suppose, what is normal, anyway? 

Seraphina has recently gotten a "Stander" from the physical therapist. 
It seriously looks like a torture device.
  Full of velcro and buckles, metal and leather.
She "stands" in it for 30 minutes everyday.  The goal is to help strengthen her torso, keep her feet flat and her legs spread so that eventually she will be able to stand and walk on her own.
Despite the scary look of it, she actually enjoys being in it.  Seriously.
It has all sorts of knobs and levers.

And as I look at her in this apparatus, I can't think of anything that is more opposite of her.
Her delicate, soft features contrasting against the cold, dark steel.
But she's a fighter, always has been.
Sometimes I think that she is stronger than me in so many ways.
I truly believe in my heart that she will be just fine.  More than fine.
That she will be running towards to the swing set all on her own, soon.
Yes, some days are easier than others for me and obviously today is not one of those days because I am dwelling on things in the past and things that I can not change.
But as Seraphina is sleeping so soundly in my arms as I type this,
with her lips slightly parted, smiling in her sleep every so often, her looong eyelashes fluttering and her tiny hand holding tightly onto my sweater,
I realize that she is perfect already.

Thanks for listening..I needed that.

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deb duty said...

She's a beautiful little girl. I'm glad she enjoys her time in the stander. I hope it will help.

JennyO said...

This is wonderful, when I saw the photo of her foot in the stander the contrast hit me. And it does sound like your child is quite the fighter, sounds like her parents are too.

Jessica said...

It is so easy to forget Seraphina's difficulties. When we're all together and she's laughing and playing with the cousins, there are no milestones, just happiness and laughter.

The Stander is such a contrast. Your photos are quite striking. The last one, especially. Isn't it funny how kids adapt? I'm so glad that she likes being in it... I'll bet it makes her feel more independent.

Love you. Kiss my favorite youngest niece for me.

Anonymous said...

I'm not even sure what to type. I can't imagine. You are strong and so is she I pray all will be well in her efforts and yours. enjoy your child one small stand at a time.

Michelle said...

baby girl is so strong because her parents are strong for her. she's lucky to have such a caring mommy, and I think it's wonderful that you look at her and treat her the way that you do, because she is perfect and beautiful and so sweet. and I love that little girl not only because of the fight she won when she came into the world, but because she has such character and happiness in her eyes. I'm glad you guys moved back to NC so that I get to be a part of her life. It's also pretty awesome so see Mar-Mar grow up to be such a strong mom and push through hard times with hope and love-it amazes me.

Susan said...

Wow, what an amazing contraption! I really like the contrast of the last shot and the cute little shoe. I hope things work out for you both; it looks like you're on the right path.

jillconyers said...

Wonderfully written post Marci and the images you shared speak volumes. Love the contrast captured of the soft pinks and curls compared to the stander.

Ryzmomplus2 said...

Great photos that tell a powerful yet delicate story. What a sweet, adorable girl! We are all faced with difficulties in life and your story reminds us that while some things are not always easy, they mean so much more!

Jaimee said...

oh marci...we love you guys so much, and are so proud of all of you. i think of you guys frequently, and am so thankful for phinney's sunny disposition and the strength that you and danny have. she'll get there in her own time. all three of you are doing a great job.