Wednesday, December 9, 2009

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.



31 comments:

  1. i just filled with happiness and gratitude for you that your Sophie can have a friend, reading this i could feel your joy.

    and i'm glad she wasn't...you know...

    ack

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  2. What a tale! It's a difficult situation and you were so honest and open about it. Many thanks for such a beautiful post.

    Greetings from London.

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  3. What a wonderful blessing. There is a young teen boy who lives in our neighborhood who has cerebral palsy and doesn't talk or walk, and our kids visit him and go to play too. My oldest has always talked to him. He understands, he just can't talk back. He actually has a highly developed sixth sense. The kids seem to understand him.

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  4. I share your joy, how a precious for Sophie to have found a friend. And I guess I share your worries for the possible potentialities: my daughter has a little runny nose today, and here I am already worrying about intensive care.

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  5. Lack of friends and potential disasters...........yep, these are the two things which I always seem to come back to, the one filling my heart with an indescribable sadness the other making it race with fear, and both giving me a sense of failure on my part, even though I know that this is not the case. Yep, just another day.

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  6. Its up one minute and down the next. I am glad that she has a friend. My Down's Syndrome daughter was popular with everyone but didn't have a close friend. I don't think it bothered her.
    So glad that you rescued her and nothing bad occured.

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  7. Elizabeth, this made me cry and then laugh and then cry again. Good tears.

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  8. Yes. That is life. We worry about everything but that which is really coming around the corner. I doubt seriously that potential scalping was on your top one hundred things list of things to worry about.
    And then the small and profound miracle of a friend.
    I loved this post and will think about it all day long.

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  9. I am crying and laughing. There's nothing funny about almost being scalped, but still.

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  10. Scalping is a new worry for me now.

    And wow to Janie...all I have to say...WOW...

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  11. My heart melted reading that post. Those are the days and experiences we live for. Thank you so much for sharing about Janie and Sophie. Keep us posted on the friendship.

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  12. WOW. Living with those extremes of emotion takes a lot of energy, doesn't it? And you do it with humor, honesty, eloquence and LOVE. Not that you're a saint, but you are doing the work intentionally, and to the best of your ability; who could ask for more? It reminds me of one of my favorite pieces from Fr. Rohr. I'm going to send it to you. XO

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  13. I just love this Janie. What a great kid!

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  14. Oh, man, a friend. I am so sad for my Sophie...I am happy for yours. This just bums me out.

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  15. yikes!

    I'm glad she wasn't scalped - and I'm so glad she has a friend! that is just too cool for words :)

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  16. Yay for Janie & Sophie! And yay for your ears hearing her cry. And for the beautiful curls of Sophie's that are still in tact.

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  17. Katie's never had a friend either. The only thing I'm thankful for is that Katie is so delayed that she doesn't seem to notice. But maybe she does, who knows. Glad Sophie's hair stayed put.

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  18. Janie & Sophie! Sophie and Janie! it sounds like some musical duo, or some famous designers, but best of all it sounds just like two girls getting to know each other, what fun!

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  19. So glad nothing bad happened. How wonderful your daughter has a friends. It must be hard on you too. When my oldest was little he suffered from Sensory Integration Disorder and I was very isolated because other mothers just didn't understand. They just thought I was a bad parent. Thankfully with the help of therapy and time he has outgrown much of the behavior that goes along with this condition. But none the less it was lonely.

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  20. How your heart must ache for Sophie.
    It was such a beautiful image , you there in the kitchen grilling and slicing.

    The hair thing, not so much.
    And yet it felt normal , too. The instant high to low of mothering. The high was so good I'm sure.

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  21. "Sophie's FRIEND!" I hope those are the words that travel with you throughout your day, repeating and humming inside you until you have fully absorbed it. So wonderful...I nearly sobbed at the joy in your post and from the knowing that comes from also parenting a kid with special needs.

    Now scalping -- yikes. So scary and so glad it didn't actually happen.

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  22. I read this yesterday and all I could feel was choked up. Couldn't even think of a comment...

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  23. Oh my God. Love and fear and life and pain all bound together. More than anyone could hold at once.

    Blessings for tomorrow.

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  24. i loved this story, well except for the last part.
    Gosh.
    your writing is incredible, your life and strength too.

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  25. The world needs more girls like Janie.

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  26. The world needs mor girls like Janie.

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  27. "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."

    I completely relate.

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  28. I'm so touched. My heart is warm and full of hope just knowing that that little girl Janie is out there.

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  29. i think the scalp thing is almost like that theatrical technique where you make a joke so your audience won't be swamped by the depth and power of the emotion just evoked, to give them a pause to laugh and breathe, and yet, i found i was still holding my breath at the depth of emotion I felt at your gratitude that Sophie was playing with a friend. a lovely post.

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  30. what a well written post and a wonderful read. I popped over from blog gems.

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  31. filled with joy at your post and your lovely child and her lovely friend and lovely u

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