without further adieu

I still couldn’t believe that it was actually happening. Even as I fussed about the house preparing for our guests’ arrival, it just didn’t feel real. And then the phone rang sometime around noon. 

“HiJessit’sPixieMama!                So,umhere’sthething,itlookslikeweactuallyleftalittletooearly! AccordingtoMapquestweareonlythirtyminutesaway! AndohmygoshcanIjusttellyou - I’vehaboutdelevenshotsofespressosincethisweleftthismorning. See,westoppedatStarbuck’sacoupleoftimes andsoIthinkI’vebeentalkingalot butMichellehasbeensosweet! AndI’mprettysureIhaven’tlethergetawordinedgewise. Butohmygoshshe’ssuchagreatlistenerandso,um, Iknowwe’rereallyearlybutareyoureadyforus?”

I couldn’t help but laugh. It was the first time that I’d ever heard her voice, but I felt like I was talking to a lifelong friend. I looked down at my sweatpants. I put a hand to the ponytail holding back my hair. I remembered there wasn’t a stitch of makeup on my face. And I said, “Of course I’m ready. Just come.” 

As I hung up the phone, still smiling, I made a mental note not to offer anyone coffee.

As the ladies began to arrive, the house filled with a palpable energy. Pixie and Michelle were every bit as amazing off the page as on. Michelle glowed with an inner peace that permeated the room. I don’t know how she did it, but it was a neat trick. 

Pixie radiated love. I could have hugged her for days. And funny! Who knew she’d be so snarky, snorty funny? Brooke saw it too. Periodically, I caught her checking her out, looking right at her. Each and every time Pixie caught her eye, her little face lit up. The child is a spectacular judge of character.

Mama Mara and Tanya had been traveling for what must have felt like days, but you never would have known it as they breezed through the door.

In person, Tanya is every bit as beautiful and eloquent and thoughtful as she is on her blog and Mara? Well, the woman brought edible cowpies as gifts, a life size mask of her Madame Alexander doppelganger and a full bag of props. She even brought me my very own talking turd. Honestly, does it get any better than that? To know her is to love her.

As we settled around the kitchen counter for our first glass of wine, we talked like the oldest of friends. We referred to each other’s kids and husbands and (ex)boyfriends by name. We caught up on old stories and asked after people we hadn’t read about in a while. We rolled easily from topic to topic, the words spilling on top of one another and mingling with heady laughter. 

We all retired upstairs to scramble into clothes, panicking and frenzied over what to wear to dinner. Oh, perhaps that was just me. Luau even called me on it, my face flushed as I stood in the detritus of four discarded outfits. “But you said you’d check the insecurities at the door, dear. The surface doesn’t matter, remember?”  I meant it when I said it. Really, I did.

I was thrilled to have everyone in my home. I couldn’t stop moving, like a little kid on Christmas morning. I could barely contain myself.

I couldn’t wait to show John the two photographs he had given me some time ago, now framed and proudly displayed on my wall. One is a photo of an amusement park ride taken from below the structure. I’ll never forget John’s description of it. “When you look at the image,” he had said, “you think it’s something you’ve seen before. But you have never seen it from this angle before. The remarkable part of this image is that it’s taken from underneath the ride while it is in motion. You would never have had that kind of access to it. So, while you think that it’s something you’ve seen before; it’s really quite different.”

For me, that  photograph is the perfect metaphor for the photographer himself. John takes things (concepts, ideas, long held assumptions, images) that I’ve seen hundreds, even thousands of times before and he forces me to examine them from a different perspective. I treasure the photograph.

The house was soon brimming over with people.

Kyra flew in on her parrot head umbrella, trailing sheer magic behind. I love her. No, I LOVE her. She needs a whole post. I can’t possibly do her justice with a few lines. She whisked in and sprinkled her Nurtured Heart fairy dust all over my house. It’s still there – sparkling, shimmering in the light. I can still see it everywhere I look. It’s on my children. It’s on my hands while I type. It’s in my hair and on my clothes and in my heart. Katie pulled me aside on Sunday morning and whispered, “Mama, I have a new friend. She’s a grown-up.” I said, “I know, baby. Me too.”

I was thrilled to see Rhemashope. Even after meeting many times before , I was still taken aback by her beauty. Maybe it’s the Faith that she carries with her so seamlessly and peacefully. Maybe it’s her regal grace. Heck, maybe it’s just great posture, but I don’t think so.

There was Jenn, streaming in on a glorious string of Jersey accented F bombs. Six feet tall and blonde. I’m not sure how everyone managed to tell us apart all night. You know, except not.

And Petra, who was brand new to me. She was warm and open and delightful. I look forward to reading her blog and discovering more about her.

And my dear friend, Hadar whose precious little boy is Brooke’s former classmate and friend. Our backgrounds could not be more different. Our hearts could not be more in tune.

At the restaurant we met up with Kim Stagliano and her husband, Mark. Kim, who fights through her own daily struggles at home while still fighting tirelessly  for all of our children (and who wears kick-@ss boots while she does). Kim and Mark, who despite one hell of a year, are still kicking  and laughing and finding the humor in all of it.

There were of course those who were desperately missed. Those who couldn’t make the trip and those who we have yet to meet. But they were with us nonetheless.

One absentee friend was there in more than spirit. As promised, I called Drama Mama from dinner and passed the phone around. I knew it was time to take it back when I heard John saying, “Oh yes, it’s all going fine. The ladies are all greased up and in the ring now.”

At a talk that John once gave I remember a young man asking if he had ever heard the stereo-type that people on the  autism spectrum don’t have a sense of humor. I think it’s pretty safe to say that John’s laid that question to rest.

Sitting at the table, I took a deep breath and looked around. It was an amazing scene to behold.

We are of different races and of different nationalities. We are of dramatically different religious backgrounds and belief systems. Some of us are married; some are single. Our children range from toddlers to teens. They have very different challenges. Many are verbal; some are not. Some are quite severely impaired; some are far more independent. Some have Autistic Disorder, some have PDD-NOS, some have Asperger’s. Many suffer seizure disorders.

We have the entire spectrum covered, in one case within a single family. Many of us have one child with autism, some have two, one has three.

Among the count are the pioneers. Those who came into the world of autism parenting long before the relative ease or obsessive compulsion of the internet. Those who were on the front lines, fighting for awareness and treatment and compassion long before the rest of us guessed we’d ever be joining them.

I tried to make a coherent toast, but I was overwhelmed. There was so much to celebrate. Riley’s dog! John’s support! A clean MRI! The incredible blessing of this invaluable human connection and having managed to bring it out of the ether and into reality.

I was so grateful to be a part of it. It was just too much to process in one gulp.

After dinner, I found myself standing on the sidewalk outside the restaurant next to Kim. I took the chance to thank her for all that she’s done for all of our kids. “You’re welcome,” she said, shrugging slightly. “We all do what we can. We each contribute something in our own way.”

Three days later, her words still resonate.

“We all do what we can.”

We falter along this path. None of us is perfect. But we all have something to offer.  Perhaps our contribution comes in the form of a kind word when it’s most needed, perhaps in a shared story that offers up some hope. Perhaps it’s no more than an open ear and a soft shoulder.

Sometimes it’s the energy of anger and visceral passion.  Sometimes it’s a couple of hours of respite care for a friend who desperately needs some time to breathe. Sometimes it’s a clear voice in front of a microphone and sometimes it’s a soft, understanding voice on the other end of a phone line. Sometimes it’s visibility and sometimes it’s the assurance of a confidence kept.

Maybe it’s allowing others to see the soft, vulnerable underside of the tough chick routine. Maybe it’s as simple as reading each other’s words with respect and care.

Each and every one of these women (and men)  is indeed contributing something in her (or his) own way. And bit by bit, in concert, they (like you) are making the world better for all of our children.

From my own little corner of the world, I thank all of you from the bottom of my heart.

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24 thoughts on “without further adieu

  1. M – ooooh . i love it! a fleet of dogs! a pack! perhaps next time we could get the service dog a stand-in. a stunt double, if you will. hmm, will take some thought.

  2. Phone call from the restaurant! Holy buckets, I wish I’d thought of that! (Except that I wasn’t reachable at the time. Oh well.)

    What a wonderful group of people, and a wonderful event.

  3. Jess without the boots I”m only 5 foot 10. heheh sooo when are we doing this again? I even said I’d go to Wisconsin.

    and thank you for all you have done and continue to do for our kids. You really are changing the world. How???? You lead by example. Look at your beautiful gorgeous girls. They reflect back what they see their Mama and Daddy do everyday.

  4. i think i’ve read just about everyone’s description…to the point that i can form a gestalt of the event, vicariously immerse in the get-together. whee! i (imaginatively) had fun!

    i told michelle that we needed to raise funds for a fleet of service dogs, that way we’d have an excuse to get together numerous times, over and over…give me a chance to crash one of them.

    really sounds like a fun, powerful night. the wilson family: making the world an infinitely better place.

  5. sending great heaping overflowing BUCKETFULS of love back at ‘cha and the whole amazing wilson clan! you are all so warm and welcoming and wonderful!

    yes. jess and family: making the world a better place, one service dog at a time.

  6. I’m still flying high, processing the miracle of the internet, the miracle of these amazing connections made, the incredible weekend, all of these mothers, loving their children. All different. All the same.

    Thank you so much Jess.

    xo

  7. Your description is beautiful, Jess. Such an amazing gathering. Like Carrie said, “Whenever two or more special needs moms are gathered, there is love” – and that’s exactly it – so much love. Thank you for all that you do, and all that you are.

  8. Jess,

    I am a lurker too like so many others who have felt compelled to come out lately. I had to laugh when I read your comment about “one does what one can.” When my siblings and I were younger and living at home, my mother in what she calls an attempt to make dinner prayers a bit more calm, began reading from a book of sayings and short stories each night. It was usually only a short time before one of the 6 of us began to giggle or snicker. But we all remember those stories. They have been come part of our family lore. One of them was about a man riding his horse along a path when he came upon a sparrow with its spindly legs in the air. When the man asked what the sparrow was doing he told the man the sky was going to fall and he was hoping to hold it up with his legs. The man laughed at the sparrow and mocked him for thinking that he could make a difference with his little legs if the sky were to fall. The sparrow unfazed replied, “one does what one can.”

    Thank you for doing what you can to educate, share love and tolerance, and build a network of support over internet lines.

  9. am so happy for all of you.
    sounds like it was a blast, but deep and full and lovely.
    peace, joy, love, and support to all of you very cool and amazing mommas (and daddys!)

  10. I am thankful to you (for the idea and for the hosting) and to all of the women who traveled long distances to be there. I’ve often thought, ‘Gee, wouldn’t it be nice to meet in person, to share a meal…’ But you all made it happen. Oh, what women with some love and determination can do. I don’t take it for granted. I am very blessed to have been among you all.

  11. To everyone at the dinner:

    You know what’s great? Not only did you all get to meet – many for the first time – but after taking a spin through all of Jess’ links to your pages and seeing the photos from dinner, I finally get to put names and blogs and faces to all the comments that I read here. That’s pretty cool.

    I don’t have any children, but have learned so much about children, autism, community, and unfettered love by reading Jess’ blog and comments. So…thanks.

  12. Ah John.. I agree.. Wusband is a great great word.. Just one little word, and so much is communicated.

    (In deep gratitude to Mara for allowing me to add this one word to my writing vocab.. as opposed to the 15 or so words I was using before.. :) )

  13. I’d like to add Wonderband. My husband is a doll. Not all the dad/husbands are shmucks. I’m sorry for those of you who got saddled with that sort. Hard to tell from the get go of course. It’s rather a crap shoot (a turd shoot?) as to which ones step up and which ones step away. All this turd talk makes me long for another Cow Pie. Why oh why did I give all mine to John for Martha and Cubby?

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