why

*

We had a meeting at the house last night. A group of parents gathered in our den to talk about our children – to compare notes on their progress in school, to discuss services and strategies and to support one another in our efforts to advocate for our kids.

There was solidarity. There were tears. There so often are tears. There was anger. There was fear. There was understanding. There was frustration.

I was spent long before the meeting ended.

I walked away. I wandered from the den to the office and fussed with something on the desk. I ambled into the kitchen and rinsed a glass that didn’t need rinsing.

It’s so often the same faces at these meetings. The same people who take up the mantle and fight to make things right. They look tired. We’re all tired.

As the last parent left, I trudged up the stairs. My feet were heavy on the steps.

I need to learn to say no. No, I can’t host that meeting. No, I can’t write that letter. No, I can’t speak in front of the school that night. No, I can’t run that panel.

No, I can’t.

Why can’t I say no? It’s just one syllable. “No.” Seems easy enough.

Why can’t I say it?

This week had taken its toll. I was near tears. I couldn’t fathom that it was only Wednesday.

Why do I keep doing this? Why do I keep writing calling organizing hosting finessing praying checking hoping pushing (and pushing and pushing and pushing)?

Why?

I opened Brooke’s door. She opened her eyes ever so slightly as the un-oiled hinge announced my arrival. The room was bathed in the silvery grey haze from the light spilling in from the hallway. A gentle smile spread across her face as I padded quietly over to the bed.

I bent to her and put my cheek on hers. “Mama loves you, baby,” I whispered softly.

“Mama loves you too,” she whispered back. I smoothed her covers and tucked her favorite blanket under her chin.

I stayed longer than I should have. I knelt by the side of her bed and watched her sleep – her little chest moving up and down as her lungs did their work. I was mesmerized by the rhythm of sleep.

I stroked her hair gently, hoping not to break the spell.

I stood up slowly, quietly. I looked down at my baby girl, curled into a tangle of blankets, her slender little fingers wrapped around Prairie Dawn. Dead asleep, she was still smiling.

That’s why, I thought.

That’s why.

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30 thoughts on “why

  1. And thank you, really thank you, for all that you do. Brooke may be your inspiration, but many other children and their parents benefit as well.

  2. I needed to read this today. Thanks for writing it. I’m going to put a link on my blog to this post, as I know some other people that are needing to read it as well.

    Hugs!

  3. Saying no is hard when others arent so eager to take up the task – especially when we look at our children and know they deserve everything we want/wish for them. But you must take the time – as you’ve told us before – for ourselves (okay do you really want me to dig that post out?? LOL). YOU JESS. Take time for YOU. Its been a rough week and you need time to decompress, time to laugh, shed the mantle of responsibility, and just be Jess. Plain ole Jess. Big Hugs.

    • nothing worse than your own words thrown right back at you :) .. for the record, in the middle of a CRAZY, scheduled-down-to-the-second day yesterday, i stopped the world for an hour and went to the gym. maybe that doesn’t sound so big, but an hour to myself to exercise? trust me – BIG.

      next goal is to stop answering e-mails while working out.

      baby steps.
      :)

  4. I have been on the other end of the spectrum (pun not intended)

    We have an autism support group in our city. (town, community, whatever you want to call it)

    My wife has attended it a few times. Once she convinced me to attend as well. We had no sitter, so we loaded up the boys (Derek and Logan) and headed to a local church basement.

    While it was nice to be there and meet people who had been through alot of the same things that we were going through. Struggles with birth to 3, preschool, school districts, self-conflict, etc….

    It all was very negative. Very much the whole, admit it there is no cure, there never will be a cure, and we just cope. It was very disheartening. there was just no hope involved there. it was very much an atmosphere where the only inspiration I felt was to just give up, cope with it and go on…

    Sure there was the discussion of trips with their children, school trips, where they had to go along because of needing the separation and the escape. but often those discussions weren’t of the excitement of the trip, but the worry of how to handle the conflicts and problems that were sure to arise. again No Hope.

    I am the type of Father who puts his son to bed at night, holds him very tight and says “Daddy loves you buddy, I hope that someday you will tell me the same. But always remember Daddy loves you”

    I couldn’t go back, it was just way too much negativity and really almost despair. And I too was very tired.

    • i’m so sorry that was your experience. it’s also why i’ve always been wary of ‘support groups’. our little group is completely focused on school – we’re all of similar ages in the same district – so it’s a little different.

      but you know, i think we all make our own groups. whether it’s just you and another parent you meet at speech therapy, a bunch of folks in a church basement, or a whole slew of people who ‘get together’ most weekdays in blogland .. we’re like water seeking out the lowest point .. we find each other. ;) and when we start sharing the good stuff too, it tends to spread.

      i find hope to be just as contagious as negativity.

      p.s. i love, love, love that you tell him that every night. he’s a lucky little kid, joe.

  5. ditto.
    For as long as our babies struggle, for as long as there are people to educate, for as long as there is progress to be made, for as long as people will listen, we will find time, we will be exhausted and we will do. For our babies. Because that’s what we mamas do.

  6. “Mama loves you too.”

    Priceless.

    And, please, know that there are a million other mamas out here who love you and are so thankful that you keep going like you do. You don’t have to share these moments of vulnerability with us, but you do. And that makes your messages all the more poignant…we know you’re real, and that your pain and struggles are real.

    Here’s hoping you have a fabulous weekend, doll.

  7. It’s okay to take care of yourself though, you know.. If you do too much, it’s hard to do it well. Slow it down, sister… Rest, exercise, eat right. Don’t use yourself up. Deal?

  8. That’s what it is all about Jessica, that smile. The smile that isn’t saying “cheese”, or smiling back at someone. The smile that is there because she feels free and happy and good about herself. She may be dancing, she may be sleeping that is the smile, the hint, the gift that tells us both,we are doing SOMETHING right!

  9. you’re the kind of person that would lie down in the middle of the street in front of ten flippin’ fed ex trucks for your kids.

    brooke need never ask for anything. (well, except maybe in speech class, but you know what i mean)

    what i’d like to see happen (don’t i sound like i own you or something?) is DELEGATING some of this goodness to the other fried parents in the room.

    this is something that i’m learning at work.

    you can be the quarterback. they get to be the -uh-other players (i’m afraid i don’t do sports, sorry)

    of course, though, i know when brooke looks at you with those warm brown eyes, all bets are off. she has you at hello.

    keep on keeping on. but please, pass the baton more often.

    love.

    • gee, i wonder why i have this old jerry jeff walker song in my head? .. oh the pot can’t call the kettle black / cause the trains all rollin on the same ole track ..

      lol

      love you more

  10. that smile definitely makes it worth it. doesn’t take away any of the pain or difficulty, but it justifies all of it and more.

    also, when she goes to dance class and invents her own style…that more than makes it worth it. just all of those moments where she’s unlike any other kid, happy in her own brookeness: a good thing.

  11. Thanks for keeping up the fight. The verse on my daily Bible verse in my computer sidebar was “Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.” Galatians 6:9

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