Friday, March 27, 2009

They're Up and They're Down

I made an awesome throw-it-together dinner tonight. Cooked some chopped bacon and onion until the bacon was crisp and the onions were caramelized. Then I added some cold, cooked farfalle and stirred that around until it was hot. Meanwhile, I'd whipped together a few eggs and a whole lot of parmesan cheese. I added this to the pasta mixture and stirred it around until the eggs were coating the pasta and cooked a little. Salt and pepper and my children were happily eating.

I noticed that Sophie had the faraway look in her eyes. She kept turning her head to the right and chewing her food in slow-mo. I got frustrated and pulled her chin forward. This went on a little more, the boys chattering as usual and then Sophie really turned her head to the right and proceeded to have a BIG seizure. Again. At the table during a meal. I lowered her to the floor and on the way down, I glanced up and noticed Henry, his head hanging down. I noticed when Sophie's stiff hand hit Oliver, who was sitting next to her, that he glanced down, too, and pushed it away. They both said, "Wow, it's big" and maybe Henry asked whether Sophie was all right before he got up, brought his plate to the sink and literally ran out of the kitchen. I asked him to bring me a pillow, and he did that. He brought a pillow and helped me to put it under her head, but then he was gone, out the door and outside. Oliver, on the other hand, got down from his seat and knelt down for a second with me, patted Sophie's shoulder as she seized and then he ran off and outside, too.

I sat on the floor and tried to make Sophie as comfortable as possible. I was crouched next to her and I was suddenly overcome, NOT by worry for her, but worry for these boys. I suddenly had this weird feeling that they would only remember this one day. Their mother, crouched over their sister who lay on the cold kitchen floor after seizing. I sat there, literally sobbing, allowing myself the worry. What would they remember of me, the mother of their childhoods? Would I be remembered as sad? As broken or damaged? Would they remember just how many seizures they have witnessed. Would they remember feeling disappointed that the new drug really didn't work?

I only write this, here, to make it clear. Words make things clear. I am aware that there is a strange selfishness, a self-absorption, really, in worrying about what my children will think of me when they are adults. How they will remember me. Because I am not me for them. I am just me. Helpless to be anything but that. Surely they will remember a lot more of me and certainly I am not me just to please them. This knowing and unknowing is what my mothering is about. This closeness and protection and helpless letting go, this awareness, beaten into my head day in and day out about control or lack thereof. That desire is not enough. That I am hanging on.

I loved rollercoasters as a kid. I held my hands up and screamed on the descent, my heart in my throat, my eyes squeezed shut. I hate them now. The pounding beat, the clack of the wheels, the metallic smell, the push forward and down, the wind blinding me.


  1. You are doing a great job. You think, you feel, you ruminate, you study, you choose. Your children will remember your steadfast forward march.

  2. Oh, Elizabeth...I am so sorry that Sophie, you and your boys had to experience this. I am sorry that the drug didn't prevent this, and that you now face that new piece of information. I remember that "roller coaster" way of life during our cancer experience, and it is so tiring.
    When I read your words, I think that your sons will have their own responses to this new development, and their own feelings about Sophie's life experiences. I also think they will remember your loving care of Sophie and of them. They see you responding with tender care & competence to whatever arises, even in the middle of a delicious dinner that you made to nourish them. I see a hardworking, thoughtful, creative, persistent, loving woman. I think they will, too. I pray that you will have rest and refreshment this weekend as you process this new development.

  3. Your children (my children too - all children) will grow into adults that must face difficulties - maybe as hard as or even harder than yours. You are showing them the way - or simply A WAY to move through it. I appreciate your writing about these things - because even though I hardly know you - I am gleaning from your experiences to help me with my own. Please keep writing it down ....

  4. I am sorry and don't know what to say.

  5. They will remember that you were there. To care. To love. To show compassion.

    I think Kimmie hit it just right - life is not tied up with a pretty ribbon. It is reality. You are teaching them perseverance and resiliency - that you only back away from a fight to regroup and then come back for more.

    Even when you're exhausted. The things you love are worth it.

  6. Elizabeth your children are beautiful.

    I feel your pain and I am sorry.

    I think your children will remember most what you are to them. How you love them and that is the most important thing.

    I do think they will remember the seizures too. But that won't be all they remember.

    You have a beautiful family. I can tell.

    Love Renee xoxo

  7. I hate roller coasters too. I developed a lot of fears as a mother of young children. And your situation as been ever so much more challenging than mine ever was.
    Your boys will take your strength throughout their own lives. And Sophie's vulnerability, too. A sad and difficult path at times, no doubt, but what they have experienced is big. And yet they can run out to play knowing that you are there with their sister in your arms.

  8. They will remember HOW you managed it all, with love and perseverance. And they will learn that it is ok to be sad and scared sometimes too. I think about this all the time, and when Abe clams up and goes silent for a few days I worry. Will he count the days till he can escape our crazy house? Maybe sometimes, but in the end, our "typical" kids will know things about life and perseverance and compassion that others might not get till later, if at all. Trust in yourself -- you are doing a great job and your boys will be able to sort through the complexity of it at the right time. We keep processing at our house...even events that are years old.

    I didn't see this post till now. I hope you and Sophie are ok.

  9. This touched me. I suspect your boys will appreciate your strength, yours and Sophie's.

  10. Oh, lovely Elizabeth. I am sending you huge amounts of love.



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