All this waiting and talk of miracles makes me nervous, so let's bring it back down to the everyday.
I'm enjoying going back through photo albums, of which I have many, and especially as my boys get older and bigger and more -- let's say it -- teenagerish, I'm trying to remember what it was like back then -- in the olden days. Those two boys right there are growing up, and they're taxing me more than I can elaborate on the old blog. Let's say this, too: they don't kiss each other anymore, and their interaction with Sophie is minimal. I think about it every single day but write about it even less -- the toll the seizures have taken on those boys.
Wouldn't it be incredible if Sophie's seizures stopped? I said to Henry yesterday as we got ready for dinner. (By the way, she only had a scattering of seizures yesterday and was otherwise quite calm, if a bit sleepy.)
I want her to talk, Henry said. He hasn't said that in a long time. When he was small, he wished on birthday cakes and threw coins into fountains with that wish. He whispered it into my ears and probably Santa's. During the first couple of years of Catholic school, when he got a bit Jesusy, he told me that he prayed every night that Sophie would talk. When she didn't talk, he told me that he didn't believe in God, and I told him that I understood but that we don't ever really know why things happen and why they don't. I don't know when the desire for her to talk or the wish that she'd be "normal," began to fade for him, but I imagine it's happened as subtly as he has grown up and away from the boy you see in that photo.
Do you want her to talk so that she seems more like a normal person? I asked him. Asking questions of a fifteen year old boy is like fishing or maybe even plumbing. You put the bait on the line and fling it out, far. Then you start reeling in, slowly, before you lose your concentration or nod off. When things get stuck, you need to put your hands on your hips, cock your head and just look around, first. There's no telling whether it's just stopped up from everyday stuff or there's something more insidious, like tree roots and dirt in the mainline. I can fish and plumb with line and snake.
Sort of, Henry answered. I really just want to know what she has to say.
About the marijuana? I asked, or whether the seizures bother her?
About everything, Henry answered. I want to know what she thinks about it all.
in my head we are at my beach and I have built a fire and we are reaching across the fire holding our four hands only I know there are a lot more than four hands in this my magik circle there are many many hands holding your hands so tightly and I want to know to what she thinks about everything.
ReplyDeletelove,
Rebecca
So much for little boys (who are growing into men) to go through. That conversation right there shows his love for his sister.
ReplyDeleteEven when they don't speak of weighty things much anymore as teenagers, it's nice to get glimpses like this that they are actually thinking of them. I can't look back at the photo albums right now because it is too painful. I miss my girl who was so open and goofy and irreverent - she has turned in to a morose, brooding, angry teenager who eschews my every breath. Here's hoping the fewer seizures of yesterday was the beginning of a trend...
ReplyDeletePerfect answer, Henry. And may the trending slide to zero.
ReplyDeleteThis ripped my heart out, the image of him wishing on birthday candles and whispering to Santa....
ReplyDeleteI love that picture. Annabelle also had that "life-size" doll behind Sophie, and I don't think she survived the moves. I'm with Henry, I want to know what Sophie thinks and feels about it all.xoxoxo
ReplyDeleteI love what Henry said, and the heart that wishes it. And i did see that little tiny type...
ReplyDeleteLove the image of throwing that line out and coaxing it back in.
ReplyDeleteThat Henry... i adore that kid! i love this post, the sweet and the sad, the resignation and the love.
ReplyDeleteThat's what I thought he was going to say...that's what I would want to hear, too. He is so himself, so authentic. I love that!
ReplyDeleteI wonder if he carries a fortune in his wallet.
ReplyDeleteAll last night when I would wake up I would think about Sophie and wonder how she was doing. Today, all day, as I have gone about my busy-ness, she has been a quiet part of my heart. I am thinking of what if. I am thinking of possibilities. I am thinking of peace. And now I am thinking of Henry, too, that boy who, although a teenager, yes of course, carries his sister in HIS heart, who wants to know what she is thinking about it all. You have expanded my heart, Elizabeth, with your family, with your words. I thank you for that.
ReplyDeleteThis was incredibly moving. Your boys are so soulful and deep. I see different things taking their toll on my children, and I say that because I hope it helps, to know that none of us can protect our children from all the things we wish we could. I am thinking of you all every day.
ReplyDeleteElizabeth, that made me cry. You are such an amazing mom! And you captured beautifully what it is like to talk to teenagers - fishing and plumbing indeed, that and lots and lots of waiting.
ReplyDeleteI keep holding Sophie in the light.
I can understand that feeling, I think. It would be disconcerting to live with someone for years and years and never hear them verbalize, never know what's going on inside their head. I would want her to talk, too, as I'm sure you all do.
ReplyDeletei love that photo, and the fishing/plumbing metaphor.
ReplyDeleteI would like to know what Katie thinks as well, especially when she's having a meltdown. Tell Henry he's not alone.
ReplyDeleteAs a fellow mother of two teenage boys I loved your metaphor and laughed out loud...fishing and plumbing...brilliant!
ReplyDeleteAs a fellow mother of a teen who also has a disabled sibling, I cried for Henry.
To you, I send my love and understanding
Henry really gets to the heart of things, doesn't he? Even though I know Ben is never going to talk, I still sometimes have dreams where he talks. Or I still sometimes think the exact same things that Henry thinks. I think it's really good that he can talk about it. I fear that my other children are not as comfortable talking about their feelings.
ReplyDeleteI'm with Henry If I could fix only one of Maggie's disabilities, it would be her ability to talk. (obviously if I could fix them all, i would) Maggie can communicate with her dynavox, which is a gift to be sure, but the thought of a conversation, the give and take, the ups and downs, the insight, wow, even just the inflection....that would be something
ReplyDeleteAnd keep that fishing line ready to roll. My younger son is 23 and I am often still fishing. (But the 25 year old is more forthcoming, so perhaps I can drawing to the end of my fishing days)
Such beautiful children. Henry's wish touched me so deeply, remembering my own passionate wish as a sibling, wanting my sister to have access to the world, to let us know what it was to be Marla, and what she thought of absolutely everything. Dear boys. Dear you. Dear sweet Sophie.
ReplyDeleteI was driving home from work tonight, and I thought of this post, and of you and of Henry and Oliver and Sophie and I thought -- I wonder what she thinks, too.
ReplyDeletei've not been online as much, and i've obviously missed so much that has been going on here, with your family and your dear sophie. have been reading from the top to catch up. this post touched me deeply.
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