Thursday, January 9, 2014

Happiness is red






I don't know why this photo is so red-toned -- perhaps the light bounced off of Sophie's red pajama top -- but lying with Sophie on her bed tonight was such a strange and quietly wonderful experience that I was compelled to photograph her face, smiling. Sophie's face has lost most of the affect it once had, presumably due to eighteen plus years of drugs and seizures. She rarely smiles and never laughs or cries. Her eyes are expressive, but her brow is generally furrowed and she's at once "out of it" and intensely distant. When other parents or caregivers of the severely disabled talk about how happy their child is despite his or her issues, I wince. I can't honestly say whether Sophie is happy or whether she is even capable of what we think of as happiness. I think she is often content, and I know what intrigues and interests her -- she has an ineffable gentleness and remarkable grace that exude from her tiny frame -- but it's been many, many years since she's showed happiness in the form of laughing or smiling. I was typing at my computer, and she was walking around her room, when I heard what sounded like a chuckle. Henry heard it, too, and he came out of his room at the same time as I walked out of mine. We both wondered what was up, thought she was having a seizure (she hasn't had one in over a week!) and realized that she was lying on her bed, softly laughing. Smiling. When we sat down next to her, her eyes followed us, met our own eyes, and she chuckled again and smiled. It went on for many minutes, and while I thought it might be a type seizure, I wasn't entirely certain. Gelastic seizures are usually far creepier, the smile more a grimace, the laugh a cackle. Is she stoned? Henry asked, and I wondered. She's at the bottom of her first bottle of Charlotte's Web -- there's inconsistency in the dosing, you have to shake the tincture vigorously. It's possible that there's more THC at the bottom than CBD. Who the hell knows? Whatever was happening in her brain in those minutes, though, was good, I thought. I took a photo. Happiness is red. She fell asleep, eventually, her head in my lap, her amazing curls laid across the bed. She breathed slowly and peacefully.

I think she was happy.

48 comments:

  1. This stirs my heart. Beautiful.

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  2. 2O.M.G. This picture gave me chills, Elizabeth. Sophie looks so present and, yes, happy. Holding on to this Hope and sending love. x0 N

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  3. Pretty nice to see this. The colors seem right...

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  4. That is incredible...how wonderful that you and Henry got to experience that with her!

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  5. oh, wow...like a little piece of heaven that smile.

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  6. So fantastic!

    May there be many more smiles and chuckles.

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  7. oh wow! oh wow! Thank you for sharing this.

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  8. I think she was too. This photo is really different from the others.

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  9. You made me cry. It's what we all want, isn't it. For our children to be happy. She has a beautiful smile.

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  10. Here's to more of these "bright moments"!! (Rahsaan Roland Kirk) She has your big brown Italian eyes Elizabeth.

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  11. Oh Elizabeth. What a beautiful thing.

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  12. I think the eyes, rather than the smile, show content--both Sophie's and your's. The seizure-free week is such a good thing.

    Best,
    Bonnie

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  13. this is unbelievably moving, elizabeth. thank you for the photograph...you are incredible to share such an intimate moment, milestone.

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  14. Honestly- I think this is the miracle. Right here. Right in that smile. My god. What beauty. And no seizure in a week? Yeah. I'm saying miracle.

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  15. Beautiful. In so many ways, this photo is so beautiful.

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  16. I suspect your intuition is right, but it must feel like softly stepping on ice to simply enjoy or experience these moments without rushing to decipher what might be going on (is she stoned? is she happy? is she emerging from the fog of the powerful medications and suddenly more aware?). I love that you laid down with her and just let it all happen. And I am grateful that you shared it here. Love.

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  17. From here in chilly Edmonton I feel your hopeful excitement and join this chorus of hallelujahs.

    That you maintain your mindfulness and are willing to share it with us, is a beauty also.

    Thank you!

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  18. Do you know what I love about this photo? It looks like she's the one in charge of the camera. Just another selfie that she had her mom join her in.

    What a beautiful moment. I am glad you and Henry were there to share it with her,

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  19. Oh my god. What a miraculous and wonderful moment. And you are right, it doesn't matter, but Sophie looks present here to me--not stoned.

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  20. This photo IS a different Sophie. Oh my goodness I can't begin to know what this feels like for you but it must be hopeful. XOXO

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  21. Wow... Sophie is so, so beautiful and the hopefulness so grand. Sweet Jo

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  22. LOVE LOVE LOVE LOVE LOVE THIS!!!!!!!

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  23. What a beautiful sight. I got teared up just looking at the picture and sniffly reading your words. Shared smiles and laughter and love and happiness. Both of you are radiant. And your eyes, oh my you share the same eyes. I hope Sophie's seizures continue their decline and you get used to the sound of her laughing. xo

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  24. Beauty. And I think happy, too.

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  25. Extraordinary soon to become the norm. I believe it. Made cry too.
    Love
    Rebecca

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  26. Amazing! Simply amazing and beautiful. It took my breath away. I am so, so very happy for you all !
    Love, Liv

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  27. Before I even scrolled down, I just looked at the picture and tried to figure out the difference--and it was her being present! And the smile, and I wondered, have I seen any photos of her smiling on your site? Not like this! Wow! How lovely this is! I can see her resemblance to both Henry and Oliver here, too. :) :) :) :)

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  28. I read this last night and was just speechless with wonder. Oh Elizabeth. Look at Sophie. Just look at her smiling, looking so directly out at us. Soooo beautiful. Words aren't adequate.

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  29. Have never seen a picture like that of Sophie before… and I love the stoned question from your son.
    What a picture, What a story, What a day… I assume it was a good one. In the olden days they might attribute it to the CBD or the trenches in your yard that are now being filled in … and perhaps it is a little of both.
    BTW… are you writing all of this down for the book?

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  30. She is absolutely radiant, beautiful, glowing. And now I'm happy, as well. May her happiness bloom and grow, and with it, your own!

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  31. Fantastic! She is really looking at the camera, and her face is so peaceful. I'm really happy for you.

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  32. Joy is what I see - so much better than happiness

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  33. If I knew nothing about her, had never seen a picture of her before, I would think that she looks happy. And knowing about her, having seen pictures before, I still think that. And how happy I am that she can feel that, and express it.

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  34. Elizabeth, she looks radiant! Such a wonderful development.

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  35. No seizures in over a week?! That's TERRIFIC. And you know, a little cannabinoids never hurt anybody, despite what the DEA might say. :)

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  36. How very, very beautiful. The photo, and that this happened, and your telling of it.

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  37. This is a very touching and beautiful moment, another gift. I thank you for sharing it. I am moved to tears to see you both so happy. There is something so pure, innocent and healthy about laughter, don't you think? btw...red is a very spiritual color. It is the root chakra (the physical body) opening to increase the flow of spiritual energy, creating awareness. It is a beginning.

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  38. My eyes filled with tears and my heart with joy at the reading of this.

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  39. I am smiling and warm inside right now!!! Im filled with so much happiness I've probably become red :)

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  40. Look at her!!! She sure looks it. With all the love in your family, she's bound to feel it.

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