Tuesday, January 8, 2013

How We Do It: Part XXI in a series



Did I read about someone the other day -- a parent of a child with disabilities who was approaching a milestone or did someone call me to tell me about it? I was sympathetic. I think I pointed out that milestones like these cause, sometimes, physical difficulties. It wasn't long ago that I watched the coltish legs of my friends' daughters, the daughters the same age as my own but who pranced by Sophie as if she didn't exist. I remembered them on birthdays when I closed my eyes to blow out the candles on her cake and wished for -- what? No more seizures? A different life? A long life? Life? Five years, ten years, fifteen years and I felt not nausea but a pull upward from the gut to the throat. I went long periods where I didn't know how to breathe and when I did remember, it ached. After a lunch with my friends in one of those years, the milestone years, the coltish legs more shapely now, breasts formed, elementary school merging into middle and the friends', the mothers' anxiety of school, where to go and will she get in and I murmured my sympathy yet screamed inside how can they? how can they worry? how can they talk of these things in front of me? and afterward, I lay on my bed, my face pressed into the cool green of the cover, my feet hanging over the side. Did I cry? I remember the cool green and the press upward of stomach to throat, the ache in the lungs, the breath. On the phone the other day -- was it on the phone? -- when I spoke of milestones (but you're always so calm, they say, they have said, over and over through the years, the miles, the stones), I knew, at once, that I wasn't even dreading Sophie's eighteenth birthday, coming up in early March. Things do get better, some might say. The coltish girls drive now and they fill out applications for college. Where will they go? It's hard to adjust to the cold of the east when you've grown up in LA. I shake my head and say Why not Berkeley, then? My god, when I was a girl, Berkeley? So exotic! California! Eighteen years and going into the nineteenth, and finally, at last, without effort, the milestones are behind us. I care nothing for the coltish girls going off to Chicago, to New England, the South or even Berkeley. I look into Sophie's deep brown eyes that have seen nearly eighteen years, she leans into me, there is nothing in my stomach, no pull to my throat, I can breathe and there is, absolutely, no ache.

38 comments:

Brandi Guarino said...

The milestones knock me on my ass every time. Matt is still so young and I wonder if it ever stops hurting.

colleen said...

Wow! looks like you needed that family vacation as you have written a masterpiece (I realize I"m assuming this wasn't written prior to, was it?)
Love it no matter what inspired its delivery to us on your blog today.

Christy Shake said...

dear eee,
i am so glad there is no pull. i hope to get there some day. for now i see images wherever i look, in front of my door, on facebook, of exotic vacations. i cannot let go of my son or he will fall. oh, autonomy. when if ever?
xoxo

kario said...

I remain firmly convinced that comparisons are the root of all evil. I take strength in your ability to track how your response has changed over the years and your transparency and willingness to share.

Love.

Deb Colarossi said...

My words are not necessary.

Just know that it is an honour to be here with you in this.

(and that you are my absolute favourite writer)

Vesuvius At Home said...

You write like a hurricane. Taking us to hell, and then showing us the way out. Like a true master.

Birdie said...

Elizabeth, you are a wordsmith. Over and over you pull us in and tell us succinctly what most of us could never understand.

bakerfamily5 said...

I saw a piece on the Today show about a boy and his dog. His dog is trained to sense his seizures and is trained to save him. Have you heard about this? Very interesting story, thought of you and Sophie....

Heather said...

After our brief exchange this morning, you will understand when I write, my friend, now THAT, THAT was riveting and raw and honest. And yes, beautiful.

The girlie turns 6 in March. And do you think I am just protecting myself or in denial perhaps? But can I say, 5 was super hard and as you told me then, I am just so new at this this, but I have to say I breath so much better then I use to. I have not cried in ages when I have watched other loves doing their 6 year old little love things. My heart, in this moment does not ache.

For now, I will take it. And for you, and your peace, I grateful for that.

Elizabeth said...

I actually went to high school with Jennifer Arnold, the woman you saw on the Today Show -- she's remarkable, and I do know about seizure dogs. Our dog Valentine was supposed to be one, but she turned out to be more of a goofy family dog than one suited to therapy --

Elizabeth said...

I don't think you're protecting yourself or in denial in the least. I believe that "milestones" -- however they're noted or marked are sometimes "typical," and sometimes they're of our own making. I found that the "typical" milestones were heaviest to bear -- the obvious five-year birthday markers (5,10,15) -- and I think they were much more difficult when Sophie was young, young (pre-teen), because we hever had a diagnosis for her, never knew what her potential might be nor whether her seizures would stop, she would improve, etc. etc.

Lisa Lilienthal said...

Yes, what Heather said - THIS is writing that is full of pain and rawness and honesty and truth and redemption. This is the kind of writing that makes me want more of it. Bravo, mama -- for the writing and for the breathing and for the love that transcends.

krista said...

i suppose the only thing i can say is that 'i don't really understand but i will listen.' i've been saying the same thing a lot lately. to family and friends going through divorce, chemo, finding religion. "i don't really understand (how can i if i am not going through it, too?) but i will listen."

fullsoulahead.com said...

WOW.

You are amazing now. And you were amazing when you ached.

I love the honesty of this post.

Pauline Gaines said...

I do hope you're writing the book.

Ms. Moon said...

How potent is the heart-ink with which you write.

Angella said...

this is stunningly written, so painfully exquisite, so raw and real.

Denise Emanuel Clemen said...

You take my breath away.

Anonymous said...

I think we all have to deal with difficult milestones, but mine may be different than yours. I am 54. I am not married. I want to be, but I just can't find anyone. I always imagined I'd have a ton of kids, but because I wasn't married, I don't have any. I am well educated, but have an important job (I think) that doesn't pay a lot. I had trouble breathing as I saw one friend after another get married. And then have one kid after another. And I bought baby gift after baby gift, and wedding gift after wedding gift. I dread going to class reunions because I have so little to show for myself -- no good looking husband. No wallet full of pictures of cute kids. And now my friends are starting to become grandmothers. Their milestones pain me like you can't believe. Like you just can't believe.

Sara said...

I've beent thinking of this post all day: how the heart lets go just as it holds on even tighter, how it is both buoyant and heavy, how you masterfully capture the both-ness of it. I begin my day here, and often end here too (and with Ms. Moon) and I am always reminded: this is why we write. To speak our beautiful and difficult truths into the world.

Moira said...

Beautiful.

Angella said...

and that photo of your coltish girl, just beautiful.

Elizabeth said...

Thank you for your comment, Anonymous, although I do wish I knew a name to attach to your powerful words. I hear you.

Anonymous said...

Very meaningful and poignant as always! The milestone of eighteen was hard, especially hearing friends' woes about college (although now,my younger daughter is smack in the middle of tough decisions about college!) Nineteen was much harder because it meant the end of two of Campbell's favorite things-her therapeutic riding program and Young Life as well as "graduation" from high school. I envisioned her sitting, eyes glazed over, watching hours upon hours of T.V.- "I love Lucy" was her favorite at the time. It was definitely a valley.
Now, six months later, Campbell is riding again at another program which allowed her to ride even though technically she is too old. Her "jobs/life-skills" program is going guardedly well. She is still watching way too much TV and eating too much. I can't think too far into the future or I'm gripped by fear. But she is laughing again which is the only music I need!
Elizabeth McKinney

Selene said...

I hear you. With love.

Paula said...

Paula.

Elizabeth said...

Thank you so much for your wise words, Elizabeth, and I appreciate your reading my blog! It's so wonderful to know that old classmates are here and that they share some of my own experiences --

Carrie Link said...

This is gorgeous, Elizabeth, truly. If I had a nickel for every time I've thought, HOW CAN YOU SAY THAT IN FRONT OF ME? I've finally come to say, "Cry me a river."

Anonymous said...

This was such a beautiful post. Sometimes in high school I saw both Sophie and the coltish girls in myself. Ironically, it was the non-milestones (the milestones I didn't hit) that kept the milestones in perspective. I was simultaneously doing the "Oh my gosh. Where am I going to go to college?" dance and noting all the milestones that kept going by. I just wanted a week, a week and a half to go by without seizures. And I wanted a medication that didn't leave me depressed or brain-dead. There were so many "How can you say that in front of me?" moments. "Oh my God, I've just had this nasty cold. How am I ever going to finish my college apps by the 15th?" And it became, like Carrie says, "Cry me a river. I had three seizures the morning that I took the SAT." So I learned that the failed milestones kept the pre-liberal arts bitching to a minimum. I am constantly in awe of your grace as you continue through your journey with Sophie, Elizabeth. Thank you for documenting it all for the rest of us to share.
~Julianna

Francesca said...

We'll all celebrate with you Sophie's eighteenth birthday, and her deep brown eyes that we've learned to know and love through yours.

BLOOM - Parenting Kids With Disabilities said...

Brilliant! You really captured the emotions for parents like us. I'm amazed that you're at that place of no ache. And I love your humour xo

The Diamond in the Window said...

Your words are heard. I don't know quite what else to say, but you are far away across the country in an entirely different life, but you write it and boom—it lands in New York City, on my office computer, and explodes. Thank you.

Lisa said...

So beautifully written Elizabeth, Bravo.
I struggle too learning to listen to friends who do not share this path. Unlike you, I have found myself losing patience and letting go of many of these relationships because I lack the tolerance. So perhaps to answer your previous post that asked for our new year's resolution word...it would have to be "tolerance". Tolerance for myself, tolerance for others (and their opinions and perspectives) and tolerance for our hectic lifestyle. A brilliant post Elizabeth.

Jacqueline said...

Sophie's eyes are so deep and brown and beautiful and your post is a testament to an enormous LOVE which you, miraculously, are able to put into words. I can't tell you how much I have learned from reading your posts, Elizabeth. I can only say thank you, for awakening my brain and my soul to so many things.

Varda said...

So beautiful, as always, my friend. I do so love your "How we do it" posts which somehow always manage to combine poetic beauty and raw honesty and just settle into my heart and take up residence there.

(p.s. - this one is going into my January "best of other people's blogs" round-up post for sure... unless you write something even more awesome before the month is over, that is.)

Anonymous said...

I think my favorite saying, following the birth of my wonderful, but different, daughter is "Comparison is the thief of Joy". (I don't know who to attribute it to) It is all to easy to compare, both in good and bad ways, ourselves, our spouses, our children, houses, cars, LIVES to others. How wonderful to reach a place of peace where the comparison itself, nor the memory of these comparisons, bring pain.
I so enjoy your writing; it often makes me smile (sometimes sadly, but smile just the same).
Kris M.

Deb said...

I know those feelings so well. It was so much worse when Katie was young, it has softened as she has grown older. I imagine when her sister marries and has children it will hurt again, but not so hard. When I find the first grey hair on her head, when I spy the first wrinkle on her face. I lie. It sill hurts because I'm crying as I write this.

icansaymama said...

This is simply beautiful!

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