i can't wait

 

I can’t believe it’s really happening. In three days, many of you – fifteen to be precise – will materialize before my very eyes. You will, like the Velveteen Rabbit of my youth, become real.

When we started talking about all of this, it felt like a pipe dream. It all started with one beautiful little girl and her courageous and determined mom. Michelle O’Neil knew that a service dog could change her little girl’s life. She was determined to raise the money to get her daughter what she needed.

Michelle’s story was our story. We are all in this together. When one of us needs help, the village rallies.

My role in all of this started innocently enough. I asked my dear friend, John Elder Robison for his help. He generously offered to sign a copy of his best selling book, Look Me in the Eye that I could raffle off to help raise money for Riley’s dog. That would have been the end of the story. Book raffled, couple of bucks in the coffers toward the dog. But no, not with this crowd. 

The next thing I knew, I was all but pimping out poor John (not literally, Martha, I promise!) as you all raised the ante. John was a great sport and suddenly we were planning a group ‘date’. A couple of weeks later I found myself booking a reservation for fifteen in the North End and making beds for six.

You are converging on my city from all over the country. From Oregon and Wisconsin to Ohio, Pennsylvania, New Jersey and Connecticut. You are arriving by planes, trains and automobiles. You are carpooling and you are meeting at the airport for lunch.

I am thrilled seven ways to Sunday that you are coming.

I can’t wait to see you, to hug you, to raise my glass to you, to tell you face to face how much your love, guidance, support and compassion have meant and continue to mean to me.

I can’t wait to share stories, to laugh together, no doubt to cry together. I can’t wait to put a voice to your words and a three-dimensional face to the warm smiles you send over the ether.

I can’t wait to invite you into my home, to introduce you to my family, to share my beautiful girls. I know you will appreciate them for everything that they are. I know you will see them through eyes that reflect the pride of mothers who know.

I can’t wait to see the real you. The you without the glossy edits, without the perfectly chosen turns of phrase. The you without the carefully culled pictures. I can’t wait to see what doesn’t make it into the confines of your carefully constructed posts.

And what a cast of characters we are! From Pixie Mama to Michelle; Jenn to Judith; Rhemashope to Tanya; Kyra to Kim; Petra to Mama Mara. From John to my local mom friends. 

There are some of you who will be sorely missed. We will raise our glasses to Drama Mama, NiksMom, Kristen, Carrie, Joy Mama and so very many others. I can’t begin to name you all. Your absence will be palpable. And to you – who may be quietly lurking on these pages. We will raise a glass to you too.

I’m nervous, of course. What if you don’t like me? What if I’m not what you expected or hoped I’d be? What if I’m not funny? What if I’m not charming? What if I come off as too brash or too loud? What if my home is not .. I don’t know, something enough or if it’s too much of something else? What if my kid’s not autistic enough? Yes, I actually said that. I thought it.

But I will cast my insecurities out the door and I beseech you to do the same. No filters, no pretense. I won’t think twice about the ten pounds I’ve gained or the new outfit that I won’t be able to buy for the occasion. Instead I will remember that we are connected by things so far beneath the surface that the surface itself is rendered irrelevant. 

Because what all of this is really about, at its core, is community. We are desperate to connect with those who understand our experience. Those who prove to us that our individual brands of crazy are not entirely unique. Those who remind us that we are not alone on this dizzying ride. Those who share our challenges and understand why our triumphs are so huge. We cling to those who speak our native tongue. We fly across the country for the indescribable relief of speaking without the need for translation or explanation.

Some of us take vastly different approaches to our journey as parents of children with autism. We walk different roads and sometimes envision dramatically different destinations for ourselves and our incredible children. But as a group, we support one another unconditionally in our travels. We offer each other love, respite, empathy and care.

There’s much ado in the media about the so-called Autism Wars. The press loves to hone in on stories about advocates whose ideologies are so sharply divided that they seem to have no common ground left. Hate makes headlines.

You may not see us in the news. But maybe you should. We are moms who help and support and love each other. We lift each other’s spirits, we celebrate each other’s successes and we commiserate with one another when things are toughest. We offer prayers and hugs and love and we make each other laugh when we didn’t think we could. When one of us is at the end of her rope, we help her tie a knot and hold on for dear life. 

I am so grateful to have found this incredible community. Believe me when I tell you that I haven’t even scratched the surface of what you mean to me.

I am in awe of all of you. Your strength, your humor, your compassion. Each and every one of you is changing the world with your love for your children. You certainly have changed mine.

I can’t wait to meet you.

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43 thoughts on “i can't wait

  1. I gotta stop reading your posts so early in the day! I’m a limp, wet noodle now. ;-)

    Wishing with all my heart that I could be there. Instead, I’ll raise a glass of vino to toast us all. (Well, not right this moment; 8:30 in the morning is a tad early to begin, don’t you think?)

    Have a wonderful, wonderful weekend! xo

  2. “I’m nervous, of course. What if you don’t like me? What if I’m not what you expected or hoped I’d be? What if I’m not funny? What if I’m not charming? What if I come off as too brash or too loud?”

    Yeah I don’t think that’s gonna be a problem for you. Me on the other hand, between my accent and my love of the F word I tend to offend people. I will try to dial it down.

    Can’t wait to meet you all!!

    Jenn

  3. So sorry to be missing what will surely be a life-altering weekend. Here’s to you Jess, for your courage and your strength and your absolute amazingness. Relax. Enjoy. Then come back here and tell us every last detail!!

  4. Oh, how wonderful. I will be waiting (not so patiently) for next week’s update post.

    Wishing you all a soul-filling, life-affirming, heart-healing and downright FUN weekend! Hold on tightly to each other!

    April

  5. really sounds wonderful, Jess….may your weekend together offer the blessings of peace and laughter and tears and deep connections.
    will be thinking of you all!

  6. Jess, you are simply amazing. I can’t wait either!

    Hi, Carrie, I’m the one coming from Oregon! I’ll be the jet-lagged, red-eyed one!

    Looking forward to meeting everyone!

  7. “we are connected by things so far beneath the surface that the surface itself is rendered irrelevant.”
    AMEN, AMEN, AMEN.

    Jess, thanks for making all of this possible. I’m going to get to hang out with you and Judith again, finally meet your girls, and hug the women I have truly come to love over the past year. Really there are no words for such a gift.

  8. what a beautiful post of celebration and community!

    yes yes a thousand times yes to all of it! to honoring and supporting one another, no matter the details of how we shepherd our children!

    i can’t wait to see/meet every one of you! i’m so out of practice in the world of social interactions, i fear i will forget to wear pants, laugh too loudly and long, and fart when i’m meant to pass the peanuts!

    sending LOVE! see you SOON!

  9. kyra, the best part is that in this crowd, if you forget to wear pants, someone will simply compliment your knickers and offer you another glass of wine. if you laugh too loudly and long, you’ll find yourself in good company – i excel at both. and if you fart when you’re meant to pass the peanuts, ok, well then perhaps you’re on your own.

  10. oh petra, i hear ya, love. but as long as you feel like you belong, you do. this ain’t a club that kicks anyone out. like the jets .. from your first cigarette to your last dyin day :)

  11. “What if my kid is not autistic enough. Yes, I actually said that. I thought it”

    OMG Jess, thanks for saying what I find myself thinking so many times, what has kept me away from these kinds of gatherings in the past, what I have actually had hurled at me by parents of children much more affected than my guy, whose kids have not made the progress my guy has made.

    I am not worried about wearing the wrong clothes, being too heavy, too grey haired (FIXED THAT.. LOL), being too loud, dropping the F-bomb (totally guilty), saying the wrong thing at the wrong time (perfected that skill; open mouth insert BOTH FEET).

    I am terrified (so there, I admitted it) of not being ‘allowed in’ because my guy has made so much progress over the past 5 years.. he truly is not that ‘autistic’ anymore (on good days, that is.. bad days? it’s all back..). That doesn’t mean I don’t understand exactly what you all are going through, the struggles, the pain, the disappointments, the triumphs, the whole mucked up roller coaster ride. I’m still riding it.. but just not as frequent and as long as I used to.

    Does that fact make me loose my membership to ‘the club’? Will I, once again, find myself on the outside looking in (like I am at gatherings with moms of neurotypical kids?). I guess I’ll find out..

    So there, I put it out there. The whole insecure messiness of it all..

  12. You amazing community-builder, you.

    I’m dripping with envy of everyone who gets to go…

    But instead I’ll get to see my older girl do a hula hoop act at our church retreat, while her father accompanies her on electric guitar to the tune of “Wipe Out.” So at least that’s something.

    Looking forward to the reports!

  13. OOOO now I’m annoyed on Petra’s behalf. Listen it’s ok to be envious if your kid has not made the progress her guy has made but it gives me hope. So annoyed not autstic enough! So fresh!

    I feel like dropping the F bomb but this is a family show and I’m practicing for Saturday. hehe xo

  14. So glad to hear so many of you will be getting together. I, too, cannot WAIT for the posts that will follow.

    And Jess…the jets quote brought a tear to my eye.

    Everyone going to Jess’…Enjoy! Celebrate! Have a blast to end all blasts!

  15. I found your blog through facebook. I’m so glad I stopped by. I love this post. I have a special needs daughter, and I have ‘met’ so many amazing people through the blogosphere. I’ve actually met some of them, and received donated orthopedic equipment because of blogging as well. Amazing. So glad to hear another positive story!

  16. Ladies – thank you!! And I will be a member of THIS club until the day I die (and maybe even beyond.. LOL.. I’ve always said I would make one heck of a spook, haunt, ghost…).

  17. tara, welcome. your little girl is GORGEOUS!

    and amanda, dang, no way i can shrink from a double dog dare! and hey, look at us, we’re now ambassadors for a whole darn country .. geez, think of the possibilities!

  18. Well this is a truly momentous event. It’s the only time I have ever found myself wanting to visit America! LOl!! The trouble is we’re all so good at putting on the organised, coping public face. Protecting the soft underbelly (very soft in my case!) of our fragile families.

    Have a great time and drop your guard – I double dare you!

    PS THRILLED to have found your blog – I’ll be back!

  19. Oh, for the love of God!

    HOW THE HECK AM I SUPPOSED TO GET ANY WORK DONE TODAY?

    It feels like my birthday, my kids’ birthdays, Christmas eve & getting a clean MRI … all good days rolled into one.

    I can’t wait. I CAN’T WAIT!

  20. Looking forward to a full report, here and on everyone elses site. Necessary: stories, details, word of shenanigans, wild times. Have some serious fun, guys. (Well, not fun that’s serious. Just serious fun).

  21. I feel your enthisiasm and energy for helping autistic children.
    But are you doing it for those who are severly autistic-what is her daughter’s diability and diagnosis? She seens much fortunate than many children and adults. Do you know what it feels to have two autistic children? One that after
    12 years of struggling to keep her home with loved ones and to let go of your dreams for her to send to her to a residential program (Don’t worry it is the best in New England! But, in addition to having a beautiful aeverely autistic daughter (who in any parents dreams would love her to ice skate like your daughter) has an autistic son! I think you know who I am talking about. You have read her blog and did not mention to her what is going on this weekend. She has struggled for many, many long years to help both her children succeed. Do you know what it feels like to have to send your child away after giving your all to help her in a home setting. I do not think you do. You should be ashamed about talking about a “god awful quilt” that was donated to you auction. Do you know the most important thing in a gift is that it is from the heart! You should be ashamed of yourself. I am advocate for autism, and I have read many blogs, and do you know you have a neighbor in Plymouth, Ma who has more than one autistic child? I think you do and it shameful of you to not let the mom know of the event you are holding for autism.

    I will be holding 3 lectures with guest speaker Jenny McCarthy this calendar year. I will make sure your are extended an invitation but by no means any praise. Many people think you do what you do for you, not for your daughter and other children but for you. You give because you want to give and to help others and not for the praise!

  22. Jenny -

    Wow, I’m not even sure where to begin to answer what you’ve thrown at me here. I’m aghast that somehow I’ve incited so much passion and anger.

    I do not know, nor have I ever or would I ever claim to know, what it feels like to have two children with autism. I can only speak from my own experience with my little girl. My heart goes out to anyone who has to struggle with the kinds of challenges that you describe. My experience with my daughter is obviously very different.

    You ask if I know what it is like to have to send my child away. If you know anything about me then you know that I do not. I cannot possibly imagine how difficult that must be for a parent.

    I do not presume to represent anyone but myself here on this blog, or anywhere else for that matter. As I said, I can only speak from my own experience. I can only hope that by doing so perhaps I can empower others to feel comfortable doing the same.

    I have never professed to speak for an an entire group of people. No one can. I have said time and again that our experiences are as unique as our beautiful children.

    I do what I can to advocate for my child and to demystify autism in the best way that I know how – by speaking from my heart and by sharing my story in as human and as real a way as possible. You say that you are an advocate for autism. I am sure that you too are advocating in the best way that you know how. We all come at it from our own perspective and hope to make some small impact in our own way.

    You say that it is shameful that I did not let a mom in Plymouth know of the ‘event’ that I was holding for autism. Last night’s dinner was in no way shape or form an ‘event for autism’. Rather, it was a gathering of friends that grew organically from a thread of comments on this blog, in response to the raffle to raise money for a service dog for a friend’s little girl. From the comments, an e-mail chain began and the next thing we knew we had plans for dinner. I would never purposefully exclude anyone and I truly apologize if anyone felt that they had been left out, but please understand that this was not an ‘autism event’. It wasn’t even something that i created!

    As for your second to last sentence, it is true – but only if you are speaking specifically about writing. I do write for myself. I have never claimed otherwise. I write for a sense of community and understanding. I write because I connect with wonderful people with whom I find common ground. I write because it makes me a better parent.

    Anyone who knows me – who truly knows me – knows that at the very core of my being I am a mother – that there is nothing in this world more important to me than doing right by my children in every way that I possibly can. Every single thing that I do ultimately comes back to that. If anyone sees me differently so be it. In the end, there are really only two people that I need to prove myself to (Katie and Brooke).

    I’m sorry that I somehow made you so angry and I am terribly sorry that the mom in Plymouth felt left out.

    As advocates for people with autism, we ask people to open their hearts to those who are different from themselves. We ask them for compassion and tolerance. I hope that we can interact with one another from that place – a place of tolerance and understanding and above all, respect.

    I’d hate to see any of us spend what could be useful and productive energy tearing people down.

    All the best to you.

  23. the strange commenters are inevitable. it would be different if she were making any valid points…but she’s all over the map. “You don’t know what it’s like”, someone wasn’t invited somewhere, quilt stuff…I mean, come on. She doesn’t even have a consistent point of view. The internet: unfortunately, it brings in the weird ranters.

  24. what a warm generous and respectful response, jess!

    that’s you all over-warm, generous, respectful plus a gazillion other yummy descripters!!!

    i could see it in your writing and now that i’ve met you, it positively emanates from every pore of your being. thank you for welcoming me into your home!

    p.s. i’m in love with those beautiful girls of yours! CHEESE (said with book in front of my face) and hello to matilda!

    i knew it when i was reading you, but now i double know it now that i’ve met you and your super fantastic family!!!

  25. Wow. That’s a really bitter note from Jenny and a very gracious reply from you, Jess. I’m an avid reader of your blog, but seldom comment. I just wanted to let you know how much I appreciate your posts, and what a vital lifeline they are for me.
    I feel so badly that Jenny rained on your parade. I would never have made it this far without you and a couple of the other moms out there. In fact, if I knew where you were dining, I would have sent you gals a couple of bottles of champagne!

  26. As advocates for people with autism, we ask people to open their hearts to those who are different from themselves. We ask them for compassion and tolerance. I hope that we can interact with one another from that place – a place of tolerance and understanding and above all, respect.

    ****

    Yes, yes, yes… Love you.

  27. jo – thank you so much. your generous words are very, very much appreciated

    autismville – right back atcha sister

    kyra – LOVE

  28. Thanks so much Ladies! I truly had wonderful time. It was great to not have to explain myself. To be with people who just get it!!!! I wish we had had a longer time together. A long weekend next time?????? Love to you all and your wonderful kids!

    Jenn from effing Jersey

  29. So happy to hear of your great weekend, so sorry for the downer of a hurtful post. You handled it with the grace I would not have had. Please put it out of your mind, and think of all the people that are truly inspired by your words.

  30. For the record, I believe I know the mom in Plymouth who is being referred to, and although I don’t know this for sure, I am pretty said mom posted somewhere on someone’s blog that she was “so sorry that she couldn’t make it since she was so close,” suggesting that said mom WAS aware of the event and presumably had been invited, but could not go.
    I don’t presume to know the whole story, but I am pretty sure I read said comment by her somewhere.
    I am glad you all had such a great time! Good for you! That is so wonderful that you were all able to get together.

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