I really, really wish I knew who wrote the following. In part because she deserves credit for her work (ironic given its content), but mostly because I just really want to hug her.
Thank you, Charlotte, wherever you may be.
**
It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I’m on the phone and ask to be taken to the store. Inside I’m thinking, ‘Can’t you see I’m on the phone?’ Obviously not; no one can see if I’m on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all. I’m invisible. The invisible Mom. Some days I am only a pair of hands, nothing more: Can you fix this ? Can you tie this? Can you open this?
Some days I’m not a pair of hands; I’m not even a human being. I’m a clock to ask, ‘What time is it?’ I’m a satellite guide to answer, What number is the Disney Channel?’ I’m a car to order, ‘Right around 5:30, please.’
I was certain that these were the hands that once held books and the eyes that studied history and the mind that graduated summa cum laude – but now they had disappeared into the peanut butter, never to be seen again. She’s going, she’s going, she’s gone!
One night, a group of us were having dinner, celebrating the return of a friend from England. Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself. I was feeling pretty pathetic, when Janice turned to me with a beautifully wrapped package, and said, ‘I brought you this.’ It was a book on the great cathedrals of Europe. I wasn’t exactly sure why she’d given it to me until I read her inscription:
‘To Charlotte, with admiration for the greatness of what you are building when no one sees.’
In the days ahead I would read – no, devour – the book. And I would discover what would become for me, four life-changing truths, after which I could pattern my work: No one can say who built the great cathedrals – we have no record of their names. These builders gave their whole lives for a work they would never see finished. They made great sacrifices and expected no credit. The passion of their building was fueled by their faith that the eyes of God saw everything.
A legendary story in the book told of a rich man who came to visit a cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, ‘Why are you spending so much time carving that bird into a beam that will be covered by the roof where no one will ever see it?’ And the workman replied, ‘Because God sees.’
I closed the book, feeling the missing piece fall into place. It was almost as if I heard God whispering to me, ‘I see you, Charlotte. I see the sacrifices you make every day, even when no one around you does. No act of kindness you’ve done, no sequin you’ve sewn on, no cupcake you’ve baked, is too small for me to notice and smile over. You are building a great cathedral, but you can’t see right now what it will become.
At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life. It is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride.
I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on. The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.
When I really think about it, I don’t want my son to tell the friend he’s bringing home from college for Thanksgiving, ‘My Mom gets up at 4 in the morning and bakes homemade pies, and then she hand bastes a turkey for three hours and presses all the linens for the table.’ That would mean I’d built a shrine or a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, to add, ‘You’re gonna love it there.’
As mothers, we are building great cathedrals. We cannot be seen if we’re doing it right. And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.
~ Author unknown
Ed note: Very happily amended to add:
The author of the above is Nicole Johnson and you can learn more about her HERE. Thank you so much to those who directed me to her! I sincerely hope she’s OK with me reprinting her words here, something I never would have done without her permission had I been able to find her on my own first. I’m headed over to see if I can contact her.
Not a city of angels, but we can build a city of man
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We may not reach the ending
But we can start
Slowly but truly mending
Brick by brick, heart by heart
Now, even now
We’ll start learning how
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We can build a beautiful city
Yes we can
Yes we can
We can build a beautiful city
Not a city of angels, but we can build a city of man
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When your trust is all but shattered
When your faith is killed
You can give up bruised and battered
Or you can slowly start to build
.
A beautiful city
Yes we can
Yes we can
We can build a beautiful city
Not a city of angels, but finally a city of man
.
~ Beautiful City, a song from Godspell that took on an entirely new meaning for me this week
*
As you may recall, last week began in a pretty low place for our family. A place that led me to write, “It’s been the kind of week that I haven’t had since the one surrounding the day that I first heard the word autism. I’ve thought a lot this week about that day. It’s over five years ago now – but it’s been with me like it was yesterday. The panic, the guilt, the fear. The bathroom floor, the cold, hard, unforgiving walls. The retching over the toilet. The silent scream. The fist shaking at the sky. The “WHY MY GIRL?” The abject terror. It’s all with me this week.” (click HERE to read the post in its entirety.)
It was a place that led my husband to rant at God and ask, “How many Brookes do you torment with unyielding anxiety? What did she do to deserve her fate? I may not have walked the righteous path all of my life, but that gives you no right to punish Brooke, and in turn Jess and Katie. If you have a problem with me, then you should take it out on me, not them.” (click HERE to read that post in its entirety.)
But the week, as you now know, thankfully ended far differently than it began. It started with anguish, yet ended with indescribable joy. It ended with belief – in my girl, in this community, in the power of love and faith and generosity. It began in the rubble and it ended in hope.
The comments and e-mails that I received in response to yesterday’s post were delicious icing on an already perfect cake. (Yes, I know that was a really pathetic attempt at metaphor, so if you’d like we can go with ‘ice cream on top of an already perfect pie’, which makes more sense but doesn’t really have the same power because it’s not a familiar colloquialism like ‘icing on the cake’ and .. well, let’s move on, shall we?).
So many of you wrote that you were moved to tears by my girl’s story – our story – yesterday. And I was moved to tears by YOUR tears. Your investment in us, your belief in my girl, your celebration of our success are gifts far greater than I could ever dream. As I wrote on the Facebook page last night,
On Diary’s ‘About’ page, it has always said the following — “Because it is a sense of community that makes the good times sweeter for the sharing and the hard times more bearable for knowing that we’re not alone.” Today, as you have so often, you made the good times so much sweeter than I could have ever imagined. Thank you for sharing our joy these past few days. You can’t possibly know how much it means.
And then, as if to (oh, man, am I stuck revisiting that whole icing on the cake / ice cream on the pie debacle here or is there some way to gracefully ignore that it ever happened? Let’s pretend, shall we?) truly make the experience complete (yeah, I know, ‘truly make the experience complete’ seriously lacks art or imagination, but I’m running on fumes, people and we all agreed to abandon the cake / pie thing, right? Right.) Anyway ..
I began to hear from those inside the Godspell community. And as I read their messages I began to see my girl’s story in a whole different light.
I began to see within it people from all walks of life joining in and - brick by brick and heart by heart – building a city for my girl – for all of our children, for all of us. A city of love and light and compassion and hope. A city where people open their hearts to one another – differences be damned – and share their gifts. A city, not of angels, but of man.
The following are from Peggy Gordon, original cast member, co-creator and composer of one of my all time (and oft-quoted) favorite songs, By My Side; Nick Blaemire, the incredibly talented actor who went so far out of his way for us and Danny Goldstein, the director of the show.
I thank them for generously allowing me to share their words. But really, that’s just the beginning. I thank them for so much, but above all for opening their hearts, sharing their love and helping to create a whole different world – one brick, one heart at a time.
*
I’m so grateful I saw. I’m Peggy Gordon, original cast member, co-creator and composer of By My Side from Godspell. I’ve been involved, along with Steve Schwartz guiding this revival and it makes me so happy to hear that you had the exact experience we worked so hard both conceptually and actually to create during our “incarnation,” of the show and for future generations. I loved your daughter’s Jesus doll with Steve Nathan’s creative make-up, the heart on the forehead with tears under the eyes. So happy your daughter was able to enjoy the love and joy! I’m also very proud of this cast!
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jess,
you are so awesome, and so is your beautiful daughter. i can’t thank YOU enough for bringing her to the show, and for reminding everyone in our company what true compassion, patience and love looks like. you have definitely affected this show for the better, and we’re all so thrilled that we got to meet you both, and that you two enjoyed the show!
hope to see you again soon, and thank you so much for the incredible kind words.
- nick
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What a beautiful blog. I read it this morning with my sleeping daughter in my arms and wept.
They’ve all read it and were so moved. Thanks for letting us be a part of your amazing girl’s life.
I’m pretty secure in my writing. I really am. In the three years that I have been writing the blog, I have grown to believe that I have the ability to convey a story – to share with you the emotion therein, to bring you along on the journey. And yet, this morning as I sit down to write this one, I am steeped in insecurity. I honestly don’t know if I have the tools to deliver this in all of its grandeur. How do you describe magic? How do you find words for the kind of joy and pride and excitement and energy that flowed through the theater that night? I don’t know if I can. But damn it, I’m gonna try.
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While we waited for the show to begin, Brooke bounced in her seat. She folded herself into it, then popped back out. She curled into my arm, then propelled herself away. She kicked at the stage, not two feet in front of her front-row seat.
“Where are they?” she asked.
“Who, baby?”
“The Jesus friends.”
I explained that they all would be coming soon.
We ran through the drill yet again.
We don’t sing along.
Unless they say, “Audience, please sing!” Um, right, baby. Unless they say that.
We use full body listening.
Closed mouth, listening ears.
We remember that we are AT the play, not IN the play.
We don’t go on the stage. It’s only for the grown-ups.
A man in a red Godspell cap approached our seats. I thought (hoped) that perhaps he was a member of the crew with word on how to find Danny, the director.
Um, no.
He leaned over and very gently asked, “Is this Brooke?”
I had to laugh as I said, “Well, sort of.” I introduced him to my daughter and told him her real name.
“I’m Ken Davenport,” he said with an outstretched hand, “The producer.”
I knew who Ken Davenport was, but even as I shook his hand, I couldn’t believe that ten minutes before curtain, he was standing there talking to us.
He handed Brooke a teddy bear wearing a t-shirt that said, “See, Love, Follow” and a red Godspell baseball cap that matched the one on his head.
“Oh, Ken, thank you so much,” I said, a little overly gushy. “You really didn’t have to do that.” (Which loosely translated meant, “Holy crap, I really can’t believe that you are standing here and Ooooh, a baseball cap! Now we have something for the actors to sign. Suh-weet!”)
Ken told us to stay put after the show and he would send someone for us.
If it had been even remotely socially acceptable, I would have knocked him down in a bear hug.
Moments later, my phone buzzed with an incoming message from Nick Blaemire, the actor who we had originally planned to meet.
hey jess!
so sorry for my tardiness in getting back to you! i’ll meet you guys downstairs in the lobby after the show, and i’ll bring some of the cast! cant wait to see you guys – and hopefully we can go on a little walk around the theatre.
hope you enjoy the show!
- nick
Once again, I was amazed and overwhelmed with gratitude. I could only imagine what life was like backstage, thirteen minutes to curtain, and yet that was when he had written the e-mail. So many people were looking out for my girl.
I wrote back to tell him that Ken had asked us to stay put, but we’d surely see him after the show. I told him how excited we were and used an inordinate amount of exclamation points just in case he wasn’t sure.
As the show began, Brooke was rapt. She wiggled and writhed in her seat, her body in constant motion. But her eyes never left the stage. She snuggled in against me, much as she had the night before in the hotel. She’d twist and turn, but always return to my side. She moved my arm around her, put it on top of her head, wrapped it around her shoulder and pushed it in for a squeeze – wherever she needed it to be to find momentary comfort. I was thrilled to oblige.
Here’s what I will say about the show. From as objective a place as I am able to muster, it was simply incredible.
The level of talent gathered on that stage was of a caliber that I haven’t seen in years. (And I’ve seen a fair amount of shows – both on Broadway and ‘Broadway in Boston’.) I was in awe.
The voices – my God, the voices. They were tender, strong, pure and beautiful. And the performances that accompanied them left me realizing I’d been holding my breath for full scores. I wiped back tears again and again, then laughed out loud with everyone around me at the hilarious and irreverent references to pop culture. It was current and silly and funny and moving and thought-provoking and inspiring. In short, it was delightfully true to its core.
The stage itself was a wonder of creativity and ingenuity. It turned from a stage to a pool of water (literally), to a pit and then to a bed of trampolines. One of Brooke’s only outbursts was to say, “Look, they’re bouncing!”
The show felt less like a show than an experience in which we all took part. We, the audience, were drawn in at every turn and I honestly felt like the show couldn’t have happened without us. The stage, the actors, the music, the electricity – it was all accessible. It wasn’t one step removed by an orchestra pit or by stuffy convention. WE were a part of the show. And I’m pretty sure that the little girl in the front row, more than anyone, felt it.
During one scene, the actors tossed necklaces into the audience. After they’d all been thrown, Nick scooped one up and ever so gently handed it to Brooke.
During intermission, Lindsay Mendez (who sings a rendition of Bless the Lord My Soul that has officially ruined me for any other version forever), came and sat by the edge of the stage to talk with Brooke. “Hey,” she said, “I like your boots. They’re kinda like mine.” Brooke looked right at her (you got that, right? She LOOKED. RIGHT. AT. HER. and said, “Beautiful singing.” Lindsay was gracious and sweet and I dare say touched.
But there was one moment that nearly did me in. The ridiculously talented (and um, well, exceedingly hot in a young, before-he-got-so-looney-that-he-wasn’t-hot-anymore Tom Cruise kinda way) Hunter Parrish stood right in front of us during a song. And he sang that song TO my girl. And he pointed at her as he sang the words. And my kid, the one who can’t really report what just happened to save her life totally took it in and later, when I asked her, “Baby, what did Hunter sing to you?” answered with a huge grin and told me EXACTLY what he sang to her. And the tears well up behind my eyes when I think about it because the words were, “You are the light of the world.” Ad well, it just doesn’t get any better than that, now does it?
I wiped tears again and again. When Uzo Aduba sang “By My Side” it was all I could do to hold it together. When Brooke added a tiny echo, the way she knows the song from the CD, and sang, “By my side” in that angelic little voice, it was all I could do not to let it all go.
By the time that they carried Jesus up the stairs singing Beautiful City, I was toast. I wept openly. It was no longer a choice.
When the cast came back to the stage, the standing ovation was as real and spontaneous as any I’d ever seen. My girl was standing clapping as hard as anyone around her. “They carried him,” she said. “Yes, baby,” I answered. “They did.”
As the theater emptied out, we waited in our seats, as per Ken’s instructions. Within short order, we were the only ones left. Just us and the electricity that still flowed through the empty space. I couldn’t stop smiling.
Eventually, the stage manager came to bring us to the stage door. We waited for a just a few minutes and then out they came. There was no one in the theater but us and them. It was heaven.
Nick was the first out the door. Without thinking, I ran to him and hugged him. Neither of us let go even as I said, “Um, I know I don’t know you, but, well … ” Still hugging like long-lost family, Nick said, “Oh, Jess, we know each other!”
And then they spoke to Brooke. Nick told her how wonderful it was to see her there in the front row throughout the show. Telly said it was so great to meet her. George told her he was so happy she could come. Uzo admired the feathers in her hair. Julia took the Jesus doll for the picture. It was all a delirious blur.
I asked if the cast if would mind posing for a photo with Brooke. As you can see, they were all miserable and stuck up and wanted no part of it. You know, except not.
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Below is Anna Maria Perez de Tagle, who Brooke had singled out among her favorites. She called her ‘the girl in the blue princess dress’ because well, I don’t really have to explain that, do I?
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And then there was Hunter.
My voice cracked with barely held tears as I tried to tell him how incredible his performance as Jesus had been and to explain to him why it all mattered so much to us. He squatted down to Brooke. He asked her old she is. “I’m eight,” she said, “How old are you?” He laughed and told her he was very old at twenty-four. I refrained from hitting him cause he was, ya know, being really nice and talking to my kid. He asked her for a hug. He may have been Jesus, but she has her limits. “A pinky one!” she said.
And so they did.
.
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Somewhere in the middle of all of this, Hunter, still squatting down to Brooke, looked at me. “My mom is an OT,” he said. “Most of the kids she works with have autism. I totally get it.”
And this girl, who was raised Jewish, never believed in God, somewhere along the way found some twisted sort of faith and whose daughter has given her the gift of Jesus’s teachings through a 1970s movie, suddenly believed that there was no way that God didn’t have a hand in bringing her little girl to meet the actor playing Jesus whose mom is an OT. (If you followed that, give yourself a prize.)
We walked out of the theater floating on air. My heart was full with the joy of the moment, the energy of the show, the pride in my girl and damn it, myself – I had been able to deliver this experience to my girl. But more than anything, with gratitude. Gratitude for all the people who made it possible, both overtly and otherwise. Those who wrote to Ken to tell him our story, those who connected us with the people who could connect us with other people, those who responded to our last minute pleas. And you – you who supported us throughout, thought of us that day and sent along your good wishes for my girl. Every one of you was there with us as we exited the theater and stepped out into the street.
We stopped for a moment on Eighth Avenue. I grabbed my phone, determined to capture the moment.
We thank thee then O, Father, for all things bright and good
The seed time and the harvest …
~ All Good Gifts
..
If you’re new to this story, please click HERE and then HERE to catch up. (Trust me; it’ll mean a whole lot more if you do.)
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OK, so where were we?
We had just walked into American Girl when my phone buzzed again. I’m dying to tell you about American Girl. I want to tell you about how Brooke insisted on staying despite the chaos or how she walked up to a little girl and (very loudly) said, “Hi, I’m Brooke, what’s your name?” and how both the girl and her mom kind of looked at each other and laughed uncomfortably but thank God answered and how Brooke walked away with her head held high and I was so proud and yet so heartbroken all at the same time.
I want to tell you how Brooke declared that we were on a mission to buy purple pajamas for her American Girl, Nicholas – yes, she named her American Girl, who is every bit a girl, Nicholas – or how when I told her that she needed to ask someone for help, she walked up to a store clerk and said, “Can YOU help?” and when she said “Of course, honey, what do you need?” Brooke said, “To find them.” And when the lady asked, “To find what?” she said, “The purple ones.” and how I was so proud and yet so heartbroken at the same time.
I want to tell you how she let out a pained cry when the store got to be too much but how she simply refused to leave until she had found those damn pajamas. And .. say it with me … how I was so proud and yet so heartbroken at the same time.
But I won’t belabor the story any more than I already have because I know what you’re here for and well, poor April may not last another day.
When I finally got to look at my phone over lunch, I was overjoyed. BOTH the director AND the producer had contacted Erin and promised their help.
From Danny, the director. He’ll help you out when you get there. Have fun!
i can certainly help. have them look for me in the back of the house in the piano corner of the house and i’ll make intros.
they can also ask for me and the ushers should be able to point me out.
what’re their names?
From Ken, the producer
Yep, we’re on it.
For the first time in hours, I exhaled.
Oh wonderful. We’ll find him as soon as we get there. Thank you again. There aren’t words big enough to tell you how much I appreciate all this. I swear I’m vibrating w excitement for my baby. I can’t believe this is an hour and a half away.
After lunch, we headed toward the theater. But not without a couple of stops. Like this one – spinning on the sidewalk in front of Radio City Music Hall ..
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Or this one, chasing Bernice in Rockefeller Center …
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Or this one, to create perhaps the absolutely, positively, best EVER (non-Godspell) New York moment in the history of the world …
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As we turned onto 50th Street, I could barely contain my excitement. “Do you see the sign, baby?” I asked, “Do you see it?” She had no interest in stopping for a picture. “I’m RRRRRREADY for the show!” she declared, pulling me toward the door. I snapped a shot as quickly as I could.
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The theater doors weren’t open yet, so we joined the crowd in the waiting area. I was on high alert, watching the environment, sniffing out triggers, searching my girl for signs of distress. There were none. She was fidgety, of course, but once again her will dwarfed her challenges. I kissed her head and we waited.
When the doors opened, we headed to the concession to pick up the gift we’d promised her big sister. As we waited on line, Brooke grew tense. “Oh no!” she said again and again, “We’re going to miss it. Oh no! Oh no! We’re going to miss it.” My assurances fell flat, along with the fact that people were still coming in in waves. Such details simply don’t register.
We found our seats, then began to look around for what might be known as ‘the piano corner’. I was at a loss. We headed to an usher to ask for help. He was very sweet, but told me off the bat that it was his first day and he knew neither what a piano corner might be nor where to find the director. He sent us back up to the lobby to find someone else to help.
As we headed back up the stairs, Brooke began to panic. “Oh no!” she now shouted again and again, “We’re going to miss it!” I did what I could to comfort her. “I promise we won’t miss it, Brooke. I promise.” But words were no longer penetrating the surface.
A very nice lady tried to help us. She directed us back down to the theater and pointed to the piano corner. I followed her outstretched finger and, with Brooke in tow, began to step over a walkway attached to the stage.
“MA’AM!” the usher shouted, “YOU CAN’T GO THERE!”
I tried to explain where we were headed. The usher pointed back up the stairs and told me that we needed to find the lady who .. ” I didn’t hear the rest of what he had to say. Honestly, it didn’t matter. Brooke was now yelling. “OH NO! OH NO! OH NO!” and there was not a chance in Hades that I was going to drag her back up the stairs.
As calmly as I could, I interrupted the usher.
“Sir, here’s the story. I need your help. I cannot take my daughter up the stairs again. She is autistic and she’s extremely stressed out by all this. It just can’t happen. Can you please find a way to get the person that you are telling me to find and ask her to come to us? I’m really sorry to ask, but we simply need help.”
I pointed to our seats, told him that’s where we’d be and settled in.
Brooke was calm as soon as we sat down. I asked her if she was doing OK.
“I’m RRRRREADY for Godspell!” she declared.
And in that moment I knew, after all the prep and the scrambling and the failed attempts of years past, she really was.
To be continued ..
Ed note: I promise to tell the story of the show itself tomorrow. I also promise that I am not intentionally torturing you. I get up at 4:15 am, people. Like in the morning. Or sort of in the middle of what should still be the night. And I write until I run out of time before getting into the shower for work. So, with sincere apologies for the cliff hangers, unless you all want to start paying me to write, I gotta keep my job. See you tomorrow!
We thank thee then, O Father, for all things bright and good, The seed time and the harvest ..
~ All Good Gifts
*
*
Jesus and Mary packed and ready to go
*
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.
*
*
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.
*
*
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.
*
*
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.
*
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.
Where are you going? Can you take me with you? For my hand is cold And needs warmth Where are you going?
~ Godspell, By My Side
*
So no, it hasn’t been one of the best weeks in our history. I’m in a tough place. A very tough place. And yet, life goes on. The rocks keep falling, the phone keeps ringing, the bills keep showing up in the mailbox. The letters still need to be written, the meetings attended, the work done. The business of life doesn’t stop just because we happen to feel like we’ve been hit by a sledge-hammer.
And neither does the joy. Just because we stop seeing it for a while doesn’t mean it’s no longer there. Hidden really, really well maybe – buried really, really deep – but there.
Tonight, I will take my baby girl and hit the road. For the very first time in her eight and half years, she and I will be taking a road trip. Alone.
Our destination is New York City.
We have a reservation at a fancy hotel (thank you, online discount travel agent) and tickets to a Broadway show.
Not just any show, of course.
In and of itself, a ‘show’ is no gift to my daughter. In fact, she’s made it through exactly – well, one play in her life, and that was a dress rehearsal that we were lucky enough to be privy to. When we went back the next day for the actual show – not so much.
But I have high hopes.
My girl is different now. She is. I just know she is.
And there is nothing that I want to give her as much as this.
The show is Godspell.
If you don’t know the back story, please, please, please (I’m begging) stop here and read the following two posts before continuing. Please. Trust me. Please. I promise I’ll wait.
We have front row seats. I paid a king’s ransom for them. I don’t care.
After we bought the tickets a reader wrote to me to say that she knows a member of the cast. What could they do for us? she asked. How could she make my girl’s experience even more special?
I stared at her e-mail and cried. Then I called her on the phone, hung up and cried some more.
I asked Brooke if she might like to go backstage after the show, to meet the actors. Her answer was all Brooke.
“I will go so I will hug Mary Magdalene. I love her and she loves me.”
It was settled.
I want so badly for this to work for my girl.
I want to give her joy.
I want to give her the thing that she loves so very much.
I want to give her Godspell.
Yes, it’s been a hell of a week. A week in which I have questioned my faith in a way that I haven’t in years. In which I turned to friends and my pastor and still – still the answer just wasn’t there. Faith wasn’t there – isn’t there. I don’t feel it. I don’t believe it. I’ve been convinced I’d lost it.
But suddenly, as I type, I have a feeling I might know where it is.
In a trip to New York with my little girl to watch a play about joy, about freedom, about walking with God.
Yes, the gifts are there. Even when they are buried really, really deep.
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Brooke and Jesus watching Godspell together, Nov, 2010
So if you’re going to sob uncontrollably in your car on the way home from work, it really is a nice touch to have a torrential rainstorm beating down on your roof at the same time. Hell if you’re going to do it you might as well do it right.
One of the many awesome comments in response:
Quit being such an over achiever.
**
A work friend asked me how I was doing yesterday. Although his message was casual enough “How goes the battle?” I knew full well that it wasn’t casual at all. I also knew that his wife had put him up to it.
It’s been a tough week, my friends. A really, really tough week.
It’s been the kind of week where the only song running on a constant loop in my head is Shawn Colvin’s “Riding Shotgun Down the Avalanche“. And I haven’t listened to Shawn Colvin in YEARS.
It’s been the kind of week that makes me feel like a fraud. That makes me question every damn thing I – we – do. The kind of week that makes me wonder if I can really handle this – all of this. The kind of week where all of the anger confusion impotence sadness frustration eclipse the hope and the joy and the faith and the weight feels too damn big to move.
It’s been the kind of week where I write to a friend and ask, for the millionth time, “If God is all-powerful, then how – HOW can He let our kids suffer? I simply don’t get it.” And to her thoughtful response I say, “Sometimes it all just feels like bullshit.”
The kind of week where the answer to the question, “How goes the battle?” goes something like this:
“Well, I’m going to go with fine. Why? Because I have achieved the goals that I set for myself this morning:
To remain upright
To not $%*& anything up so badly that it would be irreparable tomorrow
To not curl into the fetal position under my desk
*That last one was revised from ‘To not cry behind my glasses when no one could see, which turned out to be WAY too high a bar.
So, all in all, thanks to revised expectations, I have to say I’ve pretty much kicked butt today. Thanks for asking.”
In looking back on the day later, I added ‘Kept some semblance of sense of humor’ to the list of accomplishments.
It’s been the kind of week where the gifts in this life are buried so deep that I see nothing positive for my girl in any of it. Nothing. It’s been the kind of week where as much as it usually makes me cringe, CURE feels like exactly the right word.
It’s been the kind of week that I haven’t had since the one surrounding the day that I first heard the word autism. I’ve thought a lot this week about that day. It’s over five years ago now – but it’s been with me like it was yesterday. The panic, the guilt, the fear. The bathroom floor, the cold, hard, unforgiving walls. The retching over the toilet. The silent scream. The fist shaking at the sky. The “WHY MY GIRL?” The abject terror.
It’s all with me this week.
I fell asleep in Brooke’s room last night. I was curled around her, my head on her pillow and hers on my side. I was dreaming.
All of us were together. You were there – every one of you with your beautiful kids. We were smiling and laughing. I was helping Jeneil (or was it her twin sister? I wasn’t sure in the chaos) to open a popsicle for Rhema. Hope and Katie came careening by leaving a trail of giggles behind. Miss M and Roxy were in hot pursuit. Gerry yelled from the den, ‘Hey you guys, wait up!’. The girls laughed as they dragged him into their game.
There was a sharp, pained cry from another room. Everything stopped. It was my girl. My Brooke was in trouble. I ran to find her and scooped her up in my arms.
I woke up panicked, out of breath. It took me a second to get my bearings, to figure out where I was and to realize that the pained cry was real.
My baby was yelling.
The damn demons wouldn’t even leave her to sleep.
*
I have no way to wrap this up. There is no box, no pretty ribbon. Just the reality of a mama who is hurting like hell for her girl and whose goals include staying upright and not #$&@ing things up irreparably for just one more day.
The following was originally published on October 29, 2009.
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I wonder ~
Do you know that I sneak into your room to watch you sleep, secretly hoping that you might wake up, even for a second?
When you do wake up and I’m not here, do you wonder where I am?
Do you understand why Mama has to go to work, baby?
Do you know that it kills me to leave?
Do you know that my heart breaks every single time I get into the car and drive away?
Do you know that I think of you every moment of every day?
Do you know how desperately I want to restructure your world – to make it less hostile, less foreign?
Do you know how hard I try to make things easier for you?
Do you know that I would give my right arm to take away your fears?
Do you know that I carry your worries with me? That I flinch when a baby cries even when you’re not in the room? That I wish that somehow that helped?
Do you know that there is nothing, NOTHING that I wouldn’t do to ensure your safety and happiness?
Do you know that it cuts me to the core when you say, Don’t touch me! even as I burst with pride that you finally have the words to say it?
Do you know how grateful I am for those hit-and-run hugs that come at me with all the force of the universe, even if they end just as abruptly as they start?
Do you know that your laughter has the power to heal?
Do you have any idea how much you’ve changed me?
Or how grateful I am to have been changed?
Do you know how many people are rooting for you? How many people cheer your victories and hold you in their hearts when you stumble?
Do you know that you are smart as a whip?
Do you know that you have autism?
Does that strange word that we use mean anything to you?
Does it help to know that there’s a name for the things that you struggle with? That you are not alone in those struggles?
Do you know that as you grow up there will be an army of people out there with similar experiences?
Will you want to find them?
Will you take comfort in their friendship?
Will you find pride in being different or will you choose to try to blend in?
Or both?
Do you know that as long as you can make that decision for yourself, I will feel as though Daddy and I succeeded?
Do you know that I envy you your complete lack of pretense?
Do you know that you are the most authentic person I’ve ever met?
Do you know that you make the world better, simply by being who you are?
Do you know that you touch hearts and change minds and bring everyone around you to a higher place?
Do you know that I have already learned far more from you than I will ever teach you?
The following was originally published on October 8, 2008. Click HERE to read the original post in its entirety. Ya know, if you feel the need.
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Two and a half years ago, we went to a town fair. It was a typical New England shindig with too many little kids’ rides crammed into a too-small space in the center of town. Colorful signs advertised sticky cotton candy, gooey caramel apples and impossibly delicious funnel cake that would torture little tummies late into the night. The town green was filled with the usual rides – bouncy houses, trains, cars, the sensory assaulting fun house. And of course no fair would be complete without a couple of prize-laden black holes to throw money into.
At the time of the fair, Brooke was three and Katie was five.
Katie spotted the roller coaster and asked if she could go for a ride. Calling it a ‘roller coaster’ is severely overstating the case. It was one of those gentle toddler versions of a roller coaster, made to elicit a thrill from the two to six-year-old set. We counted out our tickets and got on line to take a turn.
While we waited, I asked Brooke if she’d like to go on the ride with her sister. Brooke was a kid who seemed to love speed. We would run down the street with her in her stroller, wind in her hair as she gleefully yelled, ‘Faster! Faster!’ Putting her on the caterpillar coaster seemed to make perfect sense. I had so little understanding of her back then.
When their turn came, Katie took Brooke by the hand and led her out to find a seat. I knew that getting buckled in would be tough. Brooke was fine on all the little slow-moving trains and car rides, but when someone came toward her to check her safety belt, all hell broke loose. On the littler rides it was easier for me to step in and run interference. At the roller coaster, I was stuck behind a barrier watching helplessly.
I watched them settle in and saw Katie’s posture immediately change. She leaned in toward her sister, hunched protectively over her. The man came over to check the belts. Katie said something to him. He nodded his head in return. Brooke stayed relatively calm.
The ride started with a sudden jerk and I watched with horror as abject terror flashed across my baby’s face. My body tensed and adrenaline surged through my system as she let go a tortured cry. I was desperately afraid that she was going to wriggle out of the belt and escape. I got ready to jump the fence and stop the ride.
But then I saw it – Katie’s mouth pressed to Brooke’s ear. As they came around the corner, I could see that Katie was singing. For the entire seventeen hour duration of that ride, Katie sang to her little sister. She did not stop for a moment.
When the caterpillar finally creaked to a stop, I shoved my way through the crowd and ran frantically past all of the other parents. As soon as I reached them, I scooped my girls out of their car. In the middle of that damned fair I let the tears fall at will. I squeezed Brooke as hard as she’d let me and then I thanked her sister up and down for taking such good care of her. I asked her what she had been singing. “The Itsy Bitsy Spider song, Mama. That’s what you always sing to her when she’s freaking out. She was really scared so I thought it would help her.”
As desperate as I was to leave the fair behind, we stuck around to indulge Katie. I’m pretty sure I even bought her a cotton candy. It’s a good thing they weren’t selling ponies.
for the first time in (literally) as long as i can remember, i am about to get in the car with three girlfriends, take a road trip to go visit eight other girlfriends and – get this .. i’m SLEEPING OVER! am i feeling guilty as heck leaving the kiddos for the night? yup. am i gonna let that stop me from finally doing something for no one but me? nope. deep breath – here goes nothin.
I kissed my sweet Katie good-bye. A case of the weepies was to be expected, and as if on cue, the waterworks came. I knew it wouldn’t be easy to leave my big girl, but so too, I knew that it shouldn’t be so hard. She’s ten. We’re talking less that twenty-four hours. And SHE would be gone for four of them – out at a birthday party. I knew I could talk to her on the phone – hear all the details of the party.
She’d be fine.
I went downstairs to steal a hug from Miss Brooke.
“Baby,” I said, trying to steal her attention from Blue’s Clues – a futile task by any measure, “I have to go now.”
She rocked absent-mindedly in her hammock swing, eyes still glued to the screen. Her eyes didn’t move, but a little arm shot out of the swing and landed around my neck. I begged a kiss and got one, but her eyes were still on Blue.
“I love you, little Boo,” I said softly. “I’ll be back tomorrow afternoon, OK?”
She rocked. And watched. She put her hand over my mouth when Steve asked a question. And then she nearly killed me.
She said, “But I don’t want you to go.”
Katie has been begging me not to leave the house since she was old enough to say my name. She has been scheming about how we could raise enough money to pay the bills without Mama having to work (emptying her piggy bank and bringing me $2.63 with which to pay the mortgage was the all time best, followed closely by the lemonade stand plan) – or barring either of those working out, scheming to change our economy to a barter system so that we would no longer need money at all. We’ve talked through the reasons that Mama has had to leave the house for one reason or another for YEARS. I expect it. It still hurts like hell, but I am prepared for it.
Brooke has simply watched me go. Or not watched me, as the case has been. While I cried on my way out countless doors, she sat seemingly undeterred and unfazed by my departure. For a time, she began to register my leaving by saying, “You are going now” but for all indications it was an objective statement of fact rather than of her feelings about the fact itself. “You are going, I am staying, so be it.”
It has only been in the past few weeks that something has changed. She has told me on three different occasions that she did not want me to go. And I nearly crumbled. This would be one of those times.
The ‘But I don’t want you to go” nearly did me in.
I didn’t want to go either. I knew I did – I really, really did – but I didn’t. For heaven sake, my baby said she WANTED me. The girl who for years would not flinch when I walked in or out of a door TOLD ME THAT SHE WANTED ME TO STAY.
I wrapped my arms around her and squeezed. Her little cheek settled in just under my neck.
I had to find my resolve. This was important – for both of us.
I dug in and told her that I would be back the following afternoon. I told her I’d be home in time for lunch. I told her again and again how much I loved her – how much I would miss her. I told her that it was important to Mama to see my friends. I told her that I was excited that she was going to have some special time with her Daddy.
I kissed her again and squeezed her one last time.
She turned back to Blue.
And I went.
I went because I deserved to go. I went because we ALL deserve to go. I went because I have a husband with whom I don’t have to think twice about going. I went because nothing will REALLY fall apart in twenty-four hours no matter how pivotal to our family’s existence I (or they) may think I am.
I went because I needed to set an example for my girls. I went because if and when they become Mamas they will need to know that it’s not just OK, but it’s VITAL to do some things that serve no one but themselves. I went because they will have to understand that in order to continue to take care of others, they must first tend to themselves. I went because they will deserve to know that THEY are worth the same care and effort that they dole out so freely to those around them.
And so I went.
I wish I could write it all. I wish I could share every precious moment, from the first hugs to the last. From the roasted marshmallows around the campfire to the self-deprecating laughter that pulled me in like a delicious undertow. From the war stories to the PTO stories to the how one of us was deflowered stories.
I laughed. I laughed so hard my cheeks hurt. I laughed so hard I found myself sitting on my friend’s kitchen floor. I laughed so hard that I remembered who I am.
I looked around at this amazing group of women. Autism Mamas every one. Not a soul who I had known before this journey began, and now a group closer than family. They are my sisters. There’s no missing the bond we share.
We are different. We come from dramatically varied walks of life. I dare say our paths might not have crossed in any other way. Yet the feeling that we were MEANT to be friends is undeniable. These women heal me. Their very presence in my life is a salve.
We don’t always agree, but we always respect each other’s points of view. And we respect and cherish EACH OTHER.
We name our insecurities and laugh openly at our quirks. Cats don’t have dogs, my friends, this is a quirky group.
*
When the room gets to be too much for me, I walk outside. I stand beneath a light and watch the trees blowing in the wind. I listen to the party inside and smile as I happily eat my dinner alone. Anywhere else, I’d have needed an excuse. I’d be pretending to make a phone call or grabbing something I didn’t actually need from the car. I might be pretending to use the ladies room.
A friend walks out and asks what I’m looking at. “The tree,” I tell her. “I thought it looked pretty in the light.” She asks if I want to sit. I admit that I’m pretty darn happy right where I am. The room was more than I could handle so I’m taking a break. She smiles and we hang out for a few minutes in front of the tree.
No pretense. No socially acceptable answers. No judgement. Just honesty.
When I got home yesterday, I wrote the following on Diary’s Facebook page:
Outside my (blood) family, I know no greater gift than the delicious freedom inherent in true friendship. To unabashedly be nothing but who we are – warts and all – in the company of others who are doing the same is something far too rare in this world. To my mama-sister-friends, THANK YOU.
And I wrote this to my friends:
“She is a friend of mind. She gather me, man. The pieces I am, she gather them and give them back to me in all the right order. It’s good, you know, when you got a woman who is a friend of your mind.”
- a favorite quote by Toni Morrison, given to me years ago by my sister-friend Jeneil.
To each and every one of you reading this, may you be a Mama or a Dad, an adult on the spectrum, a sibling thereof or a dear soul who for whatever reason found this place and stayed, I wish you a village.
I wish you a place where you can fly your freak flag high and proud and know that you are loved. There is no greater gift and I could not be any more grateful to have that place in my life. It was hard-won, but it proves beyond a shadow of a doubt that it can be done.
i love you too, scrappy doo
you know why?
cause when God had this mad crazy idea to challenge us with these extraspecial kids
He said to himself (or herself)
i’ll give her a friend
a really good friend
who will GET it like no one’s business
but first
i’ll put them on opposite ends of the country
yeah
that’ll be fun
then i’ll watch them find each other
you know what, God?
DONE
look what else we can do
~ Drama Mama in one of the hundreds of e-mails that fly back and forth between us – filling my heart, holding me up and sustaining me day after day
