the seed time

Please click HERE for the back story.

We thank thee then, O Father, for all things bright and good, 
The seed time and the harvest ..

~ All Good Gifts

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Jesus and Mary packed and ready to go

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I don’t know where to start. I don’t know how on Earth I am going to wrangle into words the gift that was this weekend. No, not the gift, the thousands of gifts – the moment after moment after moment of joy, wonder, freedom, awe, CONNECTION with my girl.

Oh, above all, it is the CONNECTION I will remember.

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I’m loathe to skip the small stuff as none of it really seems small. I know I’ll have to leave some of it out as there are monumental stories within the story that need to be told. But how? How do I skip over sleeping together in the hotel? How do I not write about nine whole hours in which my girl and I were physically connected?  NINE HOURS. I can’t skip over that time. It meant too much.

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She thrashed in bed – my God, how she thrashed. And yet, all night, as she kicked and hit and tossed and turned, tormented from the inside out, she never once left my side. She curled into me and around me, constantly shifting. She pulled my arms around her, on top of her, next to her. She moved from my hip to my shoulder to my belly. But never – not once – did she pull away.

I cried the next morning as I tried to explain it to Luau. I cried for my girl. For the knowing that the damn demons don’t leave her in the night. But so too I cried because I was THERE. Because she let me be there.

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And how I could I skip the pancakes in bed or the way that she said, “We will go walk around.” The determination on her face; the desire to go OUT, to see the city. The hugeness of those things alone.

I had planned our day like Sun Tzu planned for war. If this was to work, there would have to be plans.

Our hotel was on 56th Street and Seventh Avenue. We’d walk from there to FAO Schwarz on 59th and Fifth. From FAO, if all was well we’d walk to American Girl on 49th. If we needed to pull the ripcord, we’d head straight into the park. Either way, we’d have just enough time left for lunch and then a leisurely walk to the theater on 50th and Broadway. There would be no rushing. Rushing doesn’t work.

Brooke was ready to go. “I’m RRRREADY for Godspell,” she said again and again – and yes, again. “And I will hug Mary Magdalene,” she said again and again and yes, again.

But something was wrong. It was the morning of the show and I had yet to hear from Nick, the actor who was going to meet us. I was panicked. I’d promised my girl that she was going to meet the cast, yet if I didn’t hear from him, how the heck did I plan to pull this off?

This is autism, friends. This isn’t, “Hey, kiddo, let’s go hang out by the stage door that may or may not open and may or may not have the actors coming out who may or may not have time to talk to us.” Hell no. This is autism. We needed a plan.

I wrote to Aimee, the wonderful lady who had hooked us up with Nick, to let her know that I hadn’t heard from him and that I had reached out to Erin Leigh Peck at Mama Drama NY. Erin had contacted me a while ago after hearing our story. If there was anyone who could help, I knew it was her. I didn’t know her, I’d never spoken with her, and yet there I was asking for her help. This is autism. We learn to ask.

Although I know there’s still time, I have yet to hear back from the actor who we are supposed to meet and I’m beginning to get nervous that he’s falling through on us. I know it’s now the eleventh hour, but meeting ‘Mary’ means so much to my girl that I thought I’d let you know just in case you still have the a ability to help us ensure the backstage visit. I’m so sorry to even ask on the day of, but I figure it can’t hurt at this point.

Erin sprung into action. She e-mailed Danny Goldstein, Godspell’s director along with a well-placed autism mom who she thought might be able to help. She promised to e-mail Ken Davenport, the show’s producer if all else failed. And then she sent me a roadmap of how to make sure that we could meet the actress who was so important to Brooke. She gave us a series of step-by-step instructions.

Go into the theatre and if you see someone working there who is NOT behind the box office window, tell them you need to leave a note for so-and-so in the cast. If you have to go to the box office then do but try to see if there is a house manager or someone else walking around. They probably won’t ask you who you are but if they do, say you are in from out of town to see her. 

You need to go a full hour before. Actors are officially called at 1/2 hour but usually they are there earlier to warm up or for wig/mic call.

My heart fell. This is autism. Autism doesn’t do an hour early or wandering around to find people or ‘probably’ or ‘usually’ anything. I was so grateful to Erin for all that she had done, but I knew that if we changed our plans, none of it would work. I wrote back to her with a heavy heart.

Erin,

Honestly, we can’t. This whole thing is planned w precision so that my girl will have at least some hope of tolerating the show itself. It’s hard to explain, but autism and waiting time – or worse, autism and running around not quite sure where we’re going or who we’re looking for – just don’t mix.

Last night my daughter was prepped to w/in an inch of her life for the fact that when we got to the hotel we’d have to go to the desk before the room and still – waiting to check in was TORTURE for her and it took half an hour to de-escalate afterward. If she gets anxious (as walking around a theater looking for somebody is absolutely assured to make her) the whole rest of the experience (sitting through the show) has far less likelihood of being possible. I don’t know if this is making sense at all – I sincerely hope it is and that I’m not coming off like some prima donna mom who is too lazy to go to the theater early – I SWEAR that’s not the case.

Anyway, that’s the story. We are going to stick to the plan for the day because a last-minute change could mean disaster.

I can’t tell you how much I appreciate all of the details you’ve provided and the work you obviously put into it. Please know I don’t take it lightly. But so too, this is life w autism. We gotta stick to the plan.

Sooooooo if there’s a way to do it so that we can have someone expecting us that’s wonderful. If not, I think we’re just going to have to chance it. :(

Thank you again SO VERY MUCH.

J

I put down the phone and looked over at my girl. My heart was pounding in my chest. First order of business, I was going to have to calm down. I was paddling like hell to try to make this work, but I’d have to be slow and measured above the surface. My girl was going to need that more than anything else I could give her. 

We left our bags with the bellman and headed out into the city, making our way to FAO. Brooke was HAPPY.

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And her mama couldn’t have stopped smiling for all the tea in China.

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My phone vibrated with an incoming message.

I 100% completely understand and apologize for not being more sensitive in the first place. My nephew [has autism] and I understand that whatever seemingly “little” things these children need, they are not little things to the autistic person who requires them. I get that it needs to be “just so” and considering the time and money you’ve spent on this, it’s definitely not worth rocking the boat!

I was both grateful and heartbroken. And it had nothing to do with the time nor the money. I still hoped that perhaps Nick might come through or that Erin might have a Plan B, but for now, I had to leave it to them. I’d done all that I could.

We wandered through FAO Schwarz. Well, not ‘wandered’ so much as ‘plowed’ but no matter. Brooke was on a mission to find Prairie Dawn, her favorite Sesame Street character. They didn’t have her, but there was plenty to stave off the disappointment.

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From FAO, we walked down Fifth Avenue toward American Girl. Brooke held my hand the ENTIRE ten blocks. My feet never hit the ground. As she walked, she waved. At everyone. She waved at the street vendors and the guys selling ‘Rolexes’ out of brief cases. She waved at the well-heeled shoppers and the European tourists. She waved at the old woman begging for change outside St Pat’s. She waved at everyone.

Some waved back; some smiled; some looked confused; some ignored her completely. I told her that not everyone remembers their manners.

As we walked, my phone buzzed again.

OK, director and producer EMAILED. I’m taking my daughter to an 11 am children’s show. Will check e-mail when we get out. Be sure to let me know if you hear from Nick.

This woman whom I’d never met was, like so many others had along the way, going out on a limb for my girl. I was overwhelmed with gratitude.

And hope.

We were going to make this work.

To be continued …

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26 thoughts on “the seed time

  1. So, I won’t tell the outcome. I’m reading this as though I don’t know anything because I’m so into every word and picture. It’s magical!

    Love you,
    Mom

    • But Mom, can you just tell me? I have no patience (ask your daughter) and am waiting anxiously, it’s almost to much to bare. Okay okay, I am a little (ha) dramatic, but waiting ugh:(

  2. Suspense…Oh no. For some bizarre (Okay, not so bizarre) reason I am choked up and nearly teary already. I reckon you’re going to take us on a hell of a ride, but I’m so grateful each day for this community. I don’t know what I would have done if I hadn’t made it into one of the cars. xoxo

  3. Don’t pay any attention to the note that I left your mother, really-no attention! If I were a conspiracy theorist I would think you leave ME hanging deliberately. However, I see others who can’t stand waiting either and well, I know the world DOES not revolve around me, but…..Okay I’m done complaining.

  4. hanging on your every word like always…
    and again, I’m struck by three things: 1) that the people who “get it” are the ones who help the most, 2) there are so many families and people affected by autism that they are out there to “get it”, and 3) you are the most brilliant advocate for your daughter, that you find the people who “get it” to help her, with your kindness of words and generous spirit. You and Brooke amaze me every. single. day.

  5. Hi Sheila – You are so not alone. In the begining of this blog years ago I took the cliff hangers as a deliberate attemp to torture ME. And man did they ever. I was known to email (or worse call) Jess for a peek at part two. But now I trust she never makes me wait for bad news. So with that I find my patience by reading and re-reading the post through out the day to savor the glorious details and let hope take flight for what is to come. It is like trying to go to sleep on Christmas eve when I was 5 but now I manage it and wait for Christmas – it is coming. And it will be better than anything I ever got wrapped in a box with a bow.

  6. Thank you for beginning the story so quickly! I would have had a hard time letting go of the savoring stage; the holding on and re-examining every minute in minute detail, over and over again. lol I’m still so happy for you! I keep thinking your ability to go to the theater, gives me proof that I can do the same with Ryan.I have hope and feel fearless, and I think we all feel that. We can imagine ourselves achieving and succeeding vicariously through you and Brooke. You make us braver Jess! Can’t wait for the next installment! :)

  7. WHAT????? NOOOOOOOOOOO….I can’t breathe…I want to know what happens right now!!!! Ok, ok, sorry for the rant….I will be patient…I think :-)

  8. Come on!! I’ve been thinking of you both all weekend and dying to know. No pressure, but we are in a rough patch and REALLY need YOUR trip to be great. I was so anxious that I told Russ that I might catch the train to NYC and try to find you both! (I’m not a stalker, just really invested). Please, please let the rest of the story be wonderful. Waiting with baited breath.

    • I’ve been sitting here thinking about your daughter handling the noise and distractions of NYC. This is a miracle! Getting more excited by the minute!

  9. Ok I am ending this night as I started this morning . . . Reading this post and savoring the details. Because this is what I do. I hang on to your words and hope until it is time to revel in the joy of a new experience or hard-earned progress. I am praying that when I wake up tomorrow there will be a new post allowing us to revel in both! Lord knows I cannot hold the dam much longer . . .

  10. Just a reminder that you and your girl give me my own HOPE and that the cliffhangers are a gift.

    I continue to learn that the best stories unfold over time. Your cliffhangers, though a bit of a tease (lol) are bigger than you know to me. I watch your daughter grow and accomplish new things and I see HOPE for my RM. But waiting to see how my beautiful girl will unfold before my eyes is hard, but you keep me in check. Enjoy the moment, savor the words we have to share right now and look forward to the story unfolding… that is what I will work on thanks to you :0)

  11. I love how you make this even more powerful than anyone could imagine. You always had the ability to use words like an artist’s brush, but to the reader it is almost unfair as you keep the hearts and minds going at full speed and then you say, to “be continued”. It almost seems unfair but you always saw what no one else saw in things and you always had a magical way of expressing it.
    I know it will end well because just about anything you do ends, “even better than it can”.
    We all await your next entry…..
    Love you,
    Dad

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