so much to tell you

i have so much to write, but no matter how hard i try this week, i can’t seem to find the intersection of time and energy.

there are the small pockets of time – the long, slow minutes that i find myself staring at the clock – watching 3:59 a.m. give way to 4:00, dreading the alarm clock’s wail just half an hour later.

there are the quick, short-lived bursts of energy – the antsy, foot tapping, finger drumming moments at work when it all comes together and we find success. or when we don’t.

but the two together? not so much.

and it kills me, because there’s so much to say.

i want to tell you about the cab driver who took me to work yesterday. who told me about his 21 year old son. the seizure disorder, the autism, the bout of depression, the suicide watch. how he gave up a lucrative career in sales for the flexibility of driving a cab. how the cab company let him take the taxi to the hospital after his shift so that he could be with his son after the drug interactions had gotten out of control. how his son is working now, full time at the local drug store. how proud he sounded, and how profoundly tired he was.

i want to tell you about the advice he gave me. how he told me to manage my expectations of brooke – whose name he never knew – and what she could achieve. how he told me to always think of her as three years younger than she really is. how he told me that advice would serve me well. how he told me if i never expected too much, i’d never be disappointed. i want to tell you how i bristled at his words, but said thank you and smiled and wished him well.

i want to tell you about the cheer that now follows grace at our dinner table. how, just as we always have, we hold hands and recite the words that never fail to catch in my throat, ‘thank you for the food we are about to receive and for the precious gift of each other,‘ but how brooke has apparently decided that it’s no longer enough. how after amen, we now have to put our hands into the center of the table and cheer, ‘go, go, go, go goooooolden explorers!!!’ how even though it’s a silly line from dora (of course), it feels like no less a blessing than the words that precede it. how it reminds me each and every time that we are a team. that we’re in this together.

i want to tell you about the mayday club. about how katie and i have followed her pen pal, riley’s lead and we are training together to run a 5k. how we call it mayday for a combination of our names and because we started it on the 1st of may. how luau made us our own little training schedule based on marathon training. how katie’s little ponytail bounces while she runs and her huge grin lights up the entire neighborhood. i want to tell you how good it feels to be with her for the mere ten minutes that it takes to complete our initial run.

i want to tell you how hard it is to leave brooke for those ten minutes. how it’s not the time, it’s the leaving. i want to tell you what that means. i want to explain that it kills me every time brooke says, ‘you and katie are going. bye, mama and katie’ and turns on her heel and walks away. i want to tell you about the guilt. the constant, heavy, overwhelming guilt that comes along for the run. how i feel like katie and i are constantly leaving without her. how it has nothing to do with running. how brooke almost never wants to leave the house, but how i have to go out on the weekends. i work full time, when else do i see the light of day? how if i’m being honest, it’s not just because i have to, but because i want to. how i can’t sit in the house all day. how it’s just not how i’m wired. how the walls start closing in. and how katie wants to come, no matter where i’m going. how i sometimes drag brooke along because i don’t want to be without her. about how selfish that feels. how i can’t seem to find a right answer.

i want to tell you about the man at home depot who gave me a silent signal to wait while brooke was melting down there last weekend. how the babies crying across the store had been too much for her to handle. how she couldn’t calm herself down and i couldn’t seem to help. how with one finger in the air he convinced me to stand still with my sobbing, heaving girl while he walked away. how i trusted that he had a plan. how he came back with a single orchid and held it out to her without a word. how she reached for it and took it. how it slowed her down, gave her something to focus on. how i barely managed to say, ‘thank you so much, sir. that was so nice of you.’ how that small kindness has stayed with me for a week.

i want to tell you katie’s new joke. the one about the snail who knocks on a woman’s door. how when she answers she’s disgusted by him and she throws him to the sidewalk. how four years later, the woman hears a knock on the door. how when she answers it the snail says, ‘what was that all about?’

i want to tell you how my blog world has started to bleed into my work world. how we talked about it at a business dinner last night. how my partner told everyone at the table that he thought i should be writing a book. how touched i was. i want to tell you how nice it is that my worlds have begun to collide. how it’s humanizing my business relationships and taking friendships to entirely different levels. about how much energy it took to compartmentalize my life. how blessed i feel to be in a place where people are strong enough to embrace a whole person. or maybe simply that i’m finally getting strong enough to embrace being a whole person.

i want to tell you how tired i am of the word autism. how weary i am of hearing about friends and family joining the club. how 1 in 150 is too many. how i keep asking why – why so many?

i want to tell you how team brooke is getting up and running. how we raised over a thousand dollars in the first twenty four hours. how there’s only twenty four thousand more to get to our goal. how i know we’ll get there. again.

i want to tell you how luau’s running a half marathon this weekend. and how proud i am of him. i want to tell you how disappointed i am in myself for not sticking with my goal to do the same. how mayday is the best i can do right now. and how i’m trying to be ok with that.

i want to tell you how much easier it is to type without capital letters.

i want to tell you to have a fabulous weekend. to enjoy the unofficial start to summer. to break out the whites. to remember why we observe memorial day. to thank our servicemen and women and their families. to honor the incredible sacrifice that so many have made. to remember how blessed we are to be safe and free. to remember that freedom isn’t free.

i wanted to share the words from the toby keith song ‘american soldier’ that run through my head this time of year,

And I will always do my duty, no matter what the price,
I’ve counted up the cost, I know the sacrifice,
Oh, and I don’t want to die for you,
But if dying’s asked of me,
I’ll bear that cross with honor,
‘Cause freedom don’t come free.

i want to send my love to paul and gretchen and their beautiful girls. i want to tell them that we pray for them every day. that we cannot ever thank them enough for all that they do. i want to tell you the story about my trip to nashville to see them just before paul’s last deployment to iraq. how every time we went out to eat, i scooped the bill. how it drove paul crazy and he finally confronted me. ‘jessie,’ he began, obviously fed up with my anticts, ‘why the hell do you keep paying for everything, damn it?’ how he was angry. how i looked at him sheepishly and said, ’cause i’m supporting our troops and you’re the only troop i know damn it.’

how he laughed and let it go.

how i wish he’d get his butt back from afghanistan. how grateful we all are.

yes, i have an awful lot i’d like to tell you.

if only i had the time.

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25 thoughts on “so much to tell you

  1. oh guys, i should have added ..

    ‘how much your friendship and support and kind words mean to me .. how your comments touch me every single day .. how i carry them with me .. how blessed i am to have each of you in my life.’

  2. catherine ~

    it’s not always easy to find the help you need. unfortunately, there are still a lot of professionals out there who have an awful lot to learn. but as i often say, they may be experts in their fields, but you are the expert in your child. no one knows him – his challenges or his strengths – better than you do. keep at it .. you’ll piece it together.

    all the best

  3. Thank you so much for taking the time you didn’t have. You said so much once again. Among other things, have a good Memorial Day Weekend and thanks again for putting into its proper prospective. I think you gave everyone “an orchid”.

  4. Thank you Jess; again, for saying so much, doing so much… simply being there. But most of all, for sharing your family and your stories and helping the rest of us to feel a little less adrift.

  5. Wow, enjoyed todays entry just because of what the cabby told you…interesting. My hubby and I are currently fighting/advocating to get help for our son, I didn’t think we would have this much trouble getting help for him. There have been so many doors close, doctor’s telling me it is in my head or he is “playing us”. I am trained in Early Childhood Education, the only children I have seen with my sons kinds of behaviors are children on the spectrum. The Autism Assessment team at our children’s hospital feel that the doesn’t have it…and that:

    ~hitting yourself in the head and humming for hours is normal
    ~that the no fear/sense of danger is normal
    ~that not making a lot of eye contact is normal
    ~that getting stuck on topics for hours at a time is normal

    The other professionals we have been working with like our Early Interventionist and the Preschool teachers feel he has Asperger’s with some other issues. How does one get the other so called “professionals” on your side…on the same page as you??

    Thanks again for your posts, they help me a lot :)!

    Hugs,
    catherine
    catlevy@eastlink.ca
    http://www.mystampinggrounds.blogspot.com

  6. what a great story, nicole .. human kindness .. it’s amazing how much we can do for each other with a well placed word, a flower, a gesture, a moment of solidarity

    beautiful

  7. I wanted to tell you how much I love your blog (and the cab driver, and the Home Deport guy) and how FREAKY, yet perfect and no-accidenty, that we both wrote our blogs in this format on the very same day.

    Cool.

    love.

  8. Thank you for taking the time to write on here and give us all hope and comfort. Comfort in knowing we are not alone in this fight. There ARE other people out there dealing with the same challenges. I LOVE that see are touched by small kindness on an ongoing basis. It really feeds the soul.

  9. i love home depot guy.

    girl, i’m in the same boat, but rather than sit down and actually write, i lay in bed, eyes half-mast and stare at some new jersey housewives.

    thank you for taking the time.

    it’s important.

    love you.

  10. Great post!

    How do the people at Home Depot know what to do??? My maybe/maybe not/not officially diagnosed 2 year old had a big tantrum at HD a few weeks ago. I pulled him aside to the end of an aisle and let him lay on the ground wailing and thrashing. I couldn’t hold onto him and this was what I could do for him. Stand and let him go. People were scowling at me. At him. I was embarrassed not because he was doing it, but because there was nothing I could do and the shopping needed to get done. An HD employee saw me and she came over and stood with me. She didn’t say much, but did say, “Don’t we all wish we could lay down with him right now and do that? I know I do… I have had that kind of day too.” And she stood with me and I didn’t see anyone looking and scowling any more. Just what I needed… maybe she knew.

  11. Jess, thank you for telling us all of this. Thank you for just rattling it off in perfect Jess style, so that we might share in your life.

    Big love from me to you. Go May Day Girlz!!!!!

  12. Of all the posts in my reader tonight, I knew I needed to read your words —no matter what they were. Thank you for *my* orchid, sweetie.

    Best wishes to luau on the half marathon! And I hope you ALL have a glorious, relaxing, scrumtious weekend together. xo

  13. I love all of it – the well-meaning cabbie, the Home Depot guy, your friend Paul, and Darby’s snail joke. The walks, the Mayday Club, Team Kendall, Matt’s half marathon. Thanks for telling us, for making the time, for reminding us why we have Monday off. Sending much love to all of you!

  14. “bristled”…good word. It’s the word my mind has been trying to retrieve since our IEP meeting last week. And you have brought it to me in your wonderful expression. Unnoticed, as you swallow the response you want to give…and smile instead. “Thank you” instead of ‘f–k you’, as my son’s echolalic scripting is described as an increase in spontaneous expressive language…
    PLEASE!

    “it’s not the time, it’s the leaving…” – bullseye.

    Speechless at ignorance, as well as kindness. Why am i still surprised by both?

    appreciate your time and your words jess. i will be thinking of you when i am watching those early a.m. minutes take their time…to allow me some “alone” time to second guess
    myself.

    anticipating your next entry,

  15. i want to tell you i love you and i miss you and i get it and thanks for expressing more eloquently then i in my anger can never ever do.

    xoxoxo

  16. How fortunate I am to call you my child, my role model, my little hero, my wonderful daughter. You truly “light up my life” and it appears, the lives of many others.
    Dad

  17. Pingback: starting in the middle « a diary of a mom

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