Tuesday, May 5, 2009


I'm going to do a little pseudofaulknerjoycetype thing right now and just write as a sort of exercise how my morning went in all of its chaos and, sadly, mundanity (is that a word?) because picking or peeling or lowering your child to the floor and then up so many times that it becomes a cliche is a cliche is a sad sort of affair but that's what happened when Oliver and I were in the bathroom with Sophie, brushing our teeth or I was brushing hers and Oliver was brushing his own and Sophie got that faraway look in her eye and she already was acting weird and probably shouldn't have been going to school but I just couldn't take it anymore, keeping her at home and I thought, possibly erroneously and certainly irresponsibly that I was just going to send her to school so that her aide could watch her instead and anyway, we're brushing teeth and Sophie's body stiffens and her head turns to the right and she lets out a groan as I simultaneously lift her up, stiff so that her hand gets caught in the shower curtain and sort of wraps around it and I'm still holding her and trying to balance her horizontally mainly because she broke her leg once during a seizure when it snapped from the pressure of the tonic thing but anyway Oliver is staring aghast and toothpaste is still in his mouth but he knows to try to unwrap her hand from the shower curtain so that I can carry her jerking now and horizontal out of the bathroom and around the corner to the bed where I lie her down and then simultaneously we hear the woman driving carpool beep in the driveway so that I have to holler for the boys to get going and don't make them wait but I also grab Oliver and look him in the eyes and tell him that I know it's awful but it's going to get better and I love him and Sophie will be all right but he runs out and down the hallway and collides with Henry who has missed this show and sort of brushes past Oliver on his way out the door and then Oliver yells, at the top of his lungs, which is a very good expression:


which is another good expression, really, but we frown upon here in our family, and I'm still balancing on the high wire here because I actually remonstrate, Oliver you shouldn't say that! as he runs out the door and into the waiting car. And from where I'm standing on the wire, perched there just barely, I wave at my friend in her car as she backs out of the driveway a smile plastered on my face saying Have a good day, boys have a good day!

And then I turn around and go inside.

Have you ever seen the movie Requiem for a Dream? It's a dark and disturbing nightmare of heroin addiction and a mother addicted to diet pills. Ellen Burstyn plays the mother and is truly unbelieveable, albeit nightmarish, in several hallucinogenic dream sequences. But that flashes through my mind, me on my high wire and I imagine that I could possibly resemble her:

But, DON"T WORRY because I'm O.K.

Really. The Heroic Husband (who works ungodly hours in his just-opened business) came home and drove Sophie to school when she recovered.

I had a good cry and took a shower and got dressed. Right before I left for my acupuncture appointment, my friend S called and when I said hello she asked me whether I had a cold or whether I had been crying and this made me crack up because she has a very, very difficult special needs child as well and she could just tell. And it wouldn't surprise her.

So then I felt better. Thank you S.

And then I went to see Dr. Jin who while I was lying on my bed about to be stuck with a gazillion needles asked me how I was and when I started crying she leaned over me and practically lay on top of me with the biggest hug. She told me that I was doing everything that I could do, that it was so hard to accept the situation, and so forth and she held my hand and patted my stomach and then stuck those needles all over me, turned on the Chinese music and went to go prepare my herbs.

I drifted off to sleep and when the door opened and she came inside I opened my eyes to a much better day. Meaning I haven't cried since.

She sent me off with a plastic bag of lemons from her garden and a huge bunch of Bok Choy as well as two bottles of tiny black pills on which she wrote Emotion on one and Energy on the other. Thank you Dr. Jin.


  1. beautifully written, touching and poignant. And overwhelming to say the least. Sending strength.

  2. This is so hard to read and it made my heart heavy until you kind of made me laugh in a terrible you're not supposed to laugh kind of way when I saw the Ellen Burstyn photo from Requiem From a Dream because I saw that movie and it just about gave me nightmares and still does a little when I think about it and you could never possibly resemble that frightening character that Ellen Burstyn so brilliantly portrayed so I just wanted to let you know that your post touched me and I wanted to do it in sort of a William S. Burroughs on bug spray kind of way.

    I hope you're feeling better and I wish I could make you laugh.

    Lame smiley face for you - :)

  3. You know, for a second, I was sure you had posted a picture of me.

    I don't know how either of us makes our way through these days. You have it much harder right now--but that non-stop stream of consciousness writing worked so well in expressing the fabric of this life.

  4. I think that maybe this is exactly what blogging is supposed to be.

    I'm so glad you woke up to a better day.

  5. thank you so much for this humor and honesty. owen has been especially fussy lately and is having more seizures as he falls asleep which, in turn, makes him more fussy. he whines and cries and arches for hours. yesterday, he was like this most of the day all while i nursed elliot, helped out at our business ( our office mgr is out on maternity leave), made homemade ravioli for dinner... at 7 pm i was fried and stressed. i started crying- a rarity for me. it was much needed. reading this post reminds me that you are all out there, coping with your own struggles and joys, and that it is okay to cry once in a while.

  6. I can´t even begin to try to understand what your life must be like.
    This was such a touching and at the same time humorous post. You really had me laughing out loud seeing that Ellen Burnstyn photo.
    Big hugs, Jeannette

  7. How is it you can make me cry???

    I've had days that are similar enough that I can relate. :)

  8. I am so glad you find the time to keep yourself emotionally and spiritually well.

  9. I'm so glad that you had this appointment to rest & refresh your body and spirit. What a lovely doctor you have, and those LEMONS! YUM! They make me think of strawberry lemonade over crushed ice...with or without lemon vodka in it.
    Your tale of your family's morning reminds me of trying to get Katie to the clinic for labs in the mornings, post-chemo. It is really incredible, what one can work through with a heart full of love. It's not perfection, or even "normality" (whatever that is) that matters, it's love, and you are living proof of its existence, and its vitality. Thank you for sharing your reality with us. I feel as if I'm your neighbor.

  10. What a treasure it is to have a friend who can hear volumes in your voice with just one word of "hello," and a doctor who dispenses hugs as well as "emotion" and "energy" - with a few garden treats thrown in for good measure. Much better than Ellen Burstyns isolation and her medicine cabinet. Good job picking yourself up enough to answer 1) the phone and 2) keep your appointment.

  11. oh, honey pie, honey pie, you are SO fucking talented and I am SO sorry that you are just in the thick of it right now and I'm also SO grateful to have you in my life, even though I'm far away and sometimes we go long stretches without talking, and I'm SO grateful to read your words that always make me laugh and often make me cry and are SO true and heartfelt which is just one of the many things I ADORE about you and don't even get me started on the adorableness of Oliver and Jesus Christ I miss you. xoxo

  12. While I cannot completely understand everything you have to bear, I completely understand the picture.
    So sorry. And thank you.

  13. i've been carrying your post in my head for the past couple of days thinking about how sad it is that some of these BIG things in our lives do become cliche, your cheery wave out the window, wanting to send your boys off to a good day, the friend who knew, what a gift...and how the balancing sometimes gets so hard there's nothing to do but tip over. and it's ok. it's ok. glad Dr. Jin could help.

    Thinking of you and hoping the tests are going ok and that answers are imminent.

  14. Oh Elizabeth!
    I feel so guilty when I read these traumatic posts days late.
    As if reading them right after you post them might actually help... and who knows maybe all the feeling from my fingers on my keys to your screen does help. But I'm late.
    Hope today was decent.
    And just for the record...you could never look like that. Not even close.

  15. I feel like I've read this before... maybe on another Blog Gem day. This post resonates with me. The feeling of running a marathon, then falling asleep at acupuncture (sigh - haven't been to acupuncture in almost 5 mos due to constant caretaking...)

  16. When my daughter was small I could have been the one writing this story. I look at my now beautiful 13 year old and do not remember the first 3 years of her life. I hate that. I grieve over that. It was just a constant never ending stress. I cried. A lot.
    One of the things that bothers me the most is people (who had no idea) telling me WHY this was happening. I hated their perfect damn lives. I can say though, for me that we are one of the closest families I know. I would have changed my daughter's diagnosis in a heartbeat but well, things have turned out OK in spite of the hell (and it was hell).
    I don't know what our future holds but who does? As a parent, I think the chaos made me a better more patient person. I love the sane times. I hear people bitching about the smallest things and it no longer resonates with me, the time before my daughter.

  17. What strikes me the most is the way you are present for it all, parenting Sophie and Oliver and Henry all according to their needs, moment to moment, even as everyone's needs collide. I am glad you have a community that loves you. In the times when it gets so hard to balance everything, hang on, and know you are held by that love.


  18. Beautiful, and sad and hard, and i'm reading this next to the girl who has had 14 seizures since Friday and can't sit up, you captured it just so. I've kinda got some tears. I'm having a hard week.

    Beautiful piece and beautiful pieces.


  19. without people like you Elizabeth, the world would be a colder, more harsh and less forgiving place. It's the people like you who roll through without going sour, and that is hard to continue to practice. But that is your practice, and bitterness the rare exception. Thank you for doing what you do Elizabeth, and thank you also for your way of doing it.

  20. so glad you had an acupuncture appointment at the end of this. so glad you looked oliver in the eye and said what you said. so glad for husbands who come to the rescue and friends who understand...



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