Thursday, January 12, 2012

This is not about politics.

one of my favorite cartoons, via The New Yorker

Last night, I couldn't make it down the hallway when Sophie started seizing at the dinner table. It was almost a mental lassitude that made me stop halfway and place her on the floor. The hallway is narrow, and when Henry ran to get a pillow from the sofa for under her head, I knelt beside her and grabbed her hand as it hit the wall. Oliver stood in the doorway with an expression that I would call the expression a ten year old child has when he's used to watching his older sister seize during dinner since she has done so his entire life. We were eating chicken and green chili tamales, pinto beans and tomatillo salsa. They were excellent, and everyone was happy. There were even enough to have in lunchboxes the next day, a welcome deviance from the usual turkey and cheese, peanut butter and jelly. Oliver stood in the doorway and said How come we can't just have a normal dinner? How come all my friends get to have normal dinners? This doesn't happen at Nick's house. We just eat our dinner and nothing happens. I nodded my head and agreed. Sophie's seizure stopped and she sat up, seemingly impervious. We went back in the kitchen, sat down and finished our tamales.


  1. What can I possibly say to all this?

    First, the obvious, that I hate this so much for Sophie.

    Next, not to diminish Oliver and his feelings at that moment, or any moment similar to last night but you know me. Joe is so the one that would say something along the lines of Oliver and I would have said, "And what exactly, does normal look like Joe? When you find out, let me know,okay" I might have thrown in a swear word or two, as well.

    But, more than anything I hate this for Sophie. And what it does to your heart. All of your hearts.

  2. I don't know how you do it all of you and maintain your place in the world. I ache for you and admire you so much.

  3. the thing i love about this, despite the ache of it all, is that oliver could say exactly what he was feeling. it didn't have to live inside him. he could let it out and move on. you gave him that.

  4. Angella said it beautifully. I am guessing every single one of you might have felt that way. Deal and move on and enjoy tamales. Love each other. What's a normal dinner, I wonder.

  5. Well, dammit, it's not fair that you can't have a normal dinner and by that I mean a dinner where no one has a seizure and it's not fair to Sophie and it's not fair, not fair, not fair.
    And I don't even know why we humans think anything about life WILL be fair.
    I love you so much.

  6. OMG I wrote "so sorry that happens" but must have deleted the "sorry" while i pasted my profile url!

  7. I can completely relate and I think it's healthy and encouraging that your son can take note of it so honestly.

    It isn't "normal." It isn't fair either.

    I remember shortly after Maggie got her trach. We were in crisis every second and THAT became our normal. I didn't realize it until Eddie, who had been away at school, came home for a weekend and was completely flipped out by what we were all doing. He was 20, not 10, but the look on his face allowed me to look at the situation for what it WAS, not for how well we handled it. It sucked. Truly.

    And sometimes we all have to acknowledge that.

    I love her brother going to get the pillow as you lower her to the floor. Sophie is lucky to have all of you in her life.

  8. I can't imagine the day to day world you have Elizabeth. But it is your day to day life, seizures and all. It's only when you realize that seizures, tamales, and pinto beans are in the same sentence that the pause comes. Yet life goes on and dinner resumes... Sophie back in her seat with her time.

  9. love love to you. to your babies.

    and isn't this the most baffling thing about life sometimes? that in the moments of moaning hard , on the edges, we still do the mundane or routine or ordinary.

  10. I love that you let Oliver have his say without lecturing him or giving him platitudes. I love that you acknowledged his feelings.

    And I love leftovers for lunch boxes 'cuz I hate packing lunches. Hate it.

    Love and light coming your way.

  11. Thank you for sharing this window into your life.

  12. Your dinner sounds delicious, nourishing and satisfying. To have it with a seizure every night...I have no words. Oliver's question? No idea how to answer that. Sending loving, positive energy to you.

  13. i know exactly how he feels. but i don't, really, because i got to have a pretty normal childhood until my parents divorced. and i guess that was pretty normal, too, because everyone i knew had parents who were getting divorced. i guess really, i am grieving over his words, as a mother whose child never really got to have a normal childhood, because her mother was sick her whole life. and yet, i am amazed at the normalcy you manage to achieve, even in the midst of incredible abnormality. sending you and your family love. and as you so often wish for me, i wish you mercy.

  14. It has to be so hard on all of you. I love that Oliver can express himself and that you can listen, even right in the middle of a serizure. I don't have those skills..

  15. You are heroic. Your posts are beautiful. Your family is beautiful. I love you.



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