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? Kendall 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. Matt 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. Darby 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 Kendall’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.

but

Sunday morning – 1:30 am. The night had just wound down. It was FAR past my bedtime. John was headed home, the last of the local ladies had hit the road and those that were staying over had just retired to bed. I was far too wired to think of sleep. The evening had been a whirlwind of activity and emotion. I was exhausted, but I knew that sleep was not going to come quickly.  

I headed down to the office and logged onto the computer thinking I’d quiet my brain with some idle activity. Perhaps a game of Scramble or Word Twist on Facebook or a little light blog surfing. The computer screen began to glow, brightening the dark room as it came to life.

I typed no more than www. and the computer’s browser filled in the rest. As soon as I got to wordpress, the night was changed. 

A new comment glowed yellow, awaiting approval. 

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!

I thought my heart would pound out of my chest. I was shaking. I could feel the commenter’s anger steaming from the glowing screen, sucking the oxygen out of the room. 

I crafted a response. I edited it. I re-edited it. I had to say something. On so many different levels, I didn’t feel like I could let it go unanswered. There was so much raw emotion. Here’s what I wrote.

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 (Darby and Kendall).

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.

My eyes finally closed sometime after 5am.

I know y’all are eager to hear about the evening’s gathering, and I promise to share it with you. But I just can’t stop chewing on all of this first.

The thing is, I get it. And the more I think about it, the more sense it makes to me. 

I remember the first time I was called an ‘autism advocate’. It was right before I spoke at the kick-off for the Autism Speaks Boston Walk. I received an electronic flyer describing each speaker. And there it was, in writing – Jess Wilson, autism advocate. I stared at it for a few minutes. Really? Is that what I am? I had never thought of myself that way. But I guess it made some sense that from the outside, that is indeed what I was becoming.

When I spoke at the event, my knees knocking together from nerves, I said,  “I can’t speak for you. Your child’s experience is different than my child’s. Your experience is different than mine. “

I know full well that my experience is at the shallow end of the autism pool. Relative to many others our challenges are watered down, manageable.

There has never been a moment when I have not been acutely aware of how blessed we are that Kendall was painted as lightly as she was by autism’s brush. Dumb luck? A  missed half dose of flu vaccine? Random genetic shaping? No idea. It just is what it is. I don’t take it for granted. Ever.

At best, the system of grouping such varied degrees of neurological affectation under one umbrella is confusing. Even after all this time and discussion, I still have a tough time explaining the concept when pressed. I don’t doubt that over time the process of diagnosis will become more refined. I would imagine and hope that the various gradations and different manifestations of what we now know as autism spectrum disorder will be broken down into myriad specific sub-categories.

But for now, the name that is given to Kendall’s particular set of challenges is no different from the name given to those who are far more severely impaired. And when I stand up (literally in front of a crowd or metaphorically on my blog) and say that I am speaking as the parent of a child with autism, perhaps that’s not as clear as it needs to be.

I understand the commenter’s sensitivity to that distinction. It makes perfect sense. My life is very, very different from the life of the mom described in that comment. Our challenges are not remotely comparable.

I started this blog as a personal outlet. I did not write with any goal other than to maintain my sanity. I wrote because I was overwhelmed and I needed an outlet. I sent my posts to close friends and family members and never had any expectation that it would be anything different.

But it became something very different. It became interactive. It became public. As people began to share it with each other it became even more public. And so, when a dinner organically springs from its pages, I guess someone out there is bound to view it as ‘an event for autism.’ And sadly, (heartbreakingly) someone is bound to feel left out.

Quite simply, I don’t know everyone. I can’t. Circles intersect and the world is small, but there are still countless wonderful bloggers that I have yet to encounter. Happily though, we are never more than one comment away from a new connection. That’s all it ever takes.

I can’t wrap this up neatly. I don’t know how. It’s too messy, it’s too painful. It matters too much. But I’ve got to come up for air.

I will write about dinner in the next couple of days; I promise. In the meantime, you can always head on over to John’s place and see if you can guess which shoe is mine.

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 Boston 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.

wilson girls on ice

How I Spent The Best Sunday Morning Ever

By Jess Wilson     

Once upon a time (or really about two years ago, when we still had two nickels to rub together) we hosted a fund raiser for Kendall’s integrated preschool. When Kendall first started at the school, we had been desperate to find a way to get involved and to give something back to all of the incredible people who were doing so much for our little girl. Inviting everyone to our home for a parents’ (and teachers’!) night out seemed like the perfect way to do it.

The centerpiece of the evening was a silent auction featuring over a hundred donated items from local businesses, artisans, sports teams and the like. There was something for everyone. We had jewelry from Tiffany’s, signed photos of David Ortiz and Paul Pierce, theater tickets, restaurant gift certificates, overnights at hotels. We had every interest covered.

That first year that we hosted the auction, Darby accompanied me on a last minute walk through before the guests arrived. As I checked and rechecked the bid sheets and the displays that I had agonized over for weeks, she nosed around, poking and prodding at each item. And then she saw it. And she HAD to have it.

It was a God-awful child’s quilt. Made of felt, it did not leave out a single color drawn from the palette of a six year old girl. It boasted a dizzying array of bright purple flowers, teal swirls, blue and yellow and hot pink satin swatches all fighting for attention. And she HAD to have it.

I explained how the auction worked, and why were doing it. I told Darby that she was welcome to bid for it, but explained that she would not likely win it. I also explained why that would actually be a good thing for Kendall’s school.

She ran upstairs in a flash and emptied her piggy bank. She ran back down and breathlessly offered up an overflowing handful of coins and crumpled birthday bills. She proudly informed me that she had a grand total of $17.84.

I turned around and surreptitiously scratched out the $20 minimum bid. I showed her where to write her name and her bid. She could barely stand the suspense.

I sent her up to bed as the evening hit its stride. The guests arrived and the wine flowed. Full glasses meant fuller bid sheets so I walked around making sure no glass was ever empty, including my own. In my travels, I periodically swung by to check on the blanket. A neighbor had bid $25. I raised my bid to $30 and carried on playing hostess.

The evening was a huge success. We made a bunch of money and a host of new friends. The time came to count down the auction and start the process of closing it out.

I checked on the quilt. It was up to $35. I bid$40 and kept an eye out for my competition. I called a five minute warning throughout the house.

A mom I didn’t know made her way over to check on her bid for the quilt. She saw she’d been outbid and she quickly wrote in $45. I nearly body checked her as I raised it to $50.

I’ll be honest and tell you that I’m not exactly sure what I said to scare her away. I know it included something to the effect of a wine soaked version of the following.

“OK, see, here’s the deal. My six year old bid for this tacky little quilt with every last penny in her piggy bank. Soooooooo, I really appreciate the fact that you want it and I’m really, really, really sorry to tell you this, but you’re not going to leave with it. If you really want to, you can keep bidding it up and make me pay whatever you think I should, but um my house, my party, my quilt. Thanks for coming.”

God-willing, it wasn’t really that bad, but I can’t make any promises. The next day, Darby got her quilt and was assured that it went for exactly $17.84.

Last year, in Kendall’s final year at the school, we hosted the auction again. This one was even bigger and the items up for bid were even better and more varied than they’d been the year before.

We had homemade pies, passes to Disney World, orchestra tickets, Red Sox games, canoe adventures. And in a far corner of a display in the den, we had a certificate for an hour of ice time at a local rink.

I hadn’t thought much of it when I laid it out. I grouped it with some other kid friendly activities and threw a $45 minimum bid on it.

Over the course of the evening, I noticed that it wasn’t getting much interest. And then I had an idea. I wrote my name down with the minimum bid. Darby loves to ice skate and I thought it would be perfect for her next birthday party. I figured she’d be thrilled to invite her friends to skate. No one else ever bid on it, and at the end of the evening, we were the proud owners of an hour of ice time.

Darby was thrilled, but as usual, she had her own idea. She scrunched up her nose at the idea of a birthday party on ice. Mama, my friends don’t really know how to skate. No, she had a different plan. Darby wanted the ice to herself.  Just for the family, Mama. It’ll be fun! It seemed absurdly indulgent, but for $45, I figured I could be a sport.

Nearly a year later, we finally managed to get ourselves out on the ice.

I’ve got to tell you, in the midst of what could be called no less than an emotional roller coaster of a weekend; there was one hour of pure, unadulterated BLISS. For a full sixty minutes, I couldn’t stop grinning.

Darby couldn’t have been happier to show off her moves and to teach her old mom some new tricks. And Kendall! Kendall hit the ice like nobody’s business. She started with the training stand and then decided she didn’t need it anymore. She shuffled around the ice smiling from ear to ear. Once in a while she’d lie down perfectly still, enjoying the feel of the cold ice on her back or her belly. Then she’d pop again and make her way slowly around the rink. She was thrilled.

For sixty full minutes, nothing else existed. Just the family, the ice, and the smiles. See for yourself.

 

Darby and Mama

Eye to eye

The pro lends a hand to the rookie

Look, Mama! No hands!

Maybe I’ll just hang out here for a while

The Wilson girls

 

are you sure?

 

OK, so yes, we fight to get away from scripting. We cherish any and all tidbits of conversation that are (or at least appear to be) spontaneously generated. We celebrate any dialogue whose lines can’t be immediately traced back to an episode of JoJo or a favorite Dora storybook.

But really, is it always so wrong? I mean, always? Like the following, for instance. Yes, it’s a script. No, it doesn’t vary AT ALL. Ever. But, well, I don’t care. Nope, not a whit. Sue me.

Kendall, how much do I love you?

Sooooooo much! More than anything in the whole wide world.

Admittedly, it comes out more like,

Sooooooomuchmorethananythinginthewholewideworld.

Last night at bedtime, I decided to push it a little. Maybe tease a touch. See if we could expand it.

Kendall, how much do I love you?

Sooooooomuchmorethananythinginthewholewideworld.

(In a silly, exagerated voice) Are you sure?

No.

My mind was racing. What the … ?

I’m Kendall.

ron

 

“Good morning, Jess!’

That booming, unmodulated voice. The accompanying slightly oafish grin.

The social skills that are slightly, well ‘off’ of the norm. The eye contact that falls a couple of degrees short of the intended target.

He makes me smile, despite myself. No matter how determined I am to be cranky, no matter how disastrous my day, I can’t walk by Ron without returning his greeting and his broad, overly enthusiastic smile.

A quiet voice in my head – is he one of ours?

Does he have a mom out there worrying about him as we worry about our kids? Are people looking out for my boy? Is he OK ?

Ron is a security guard in my building. I see him nearly every day. He stands by the entryway in his ill-fitted suit, the sleeves always just a little too long, manning the elevators, checking IDs.

He is one of scores of guards who work in the building. I couldn’t tell you the name of a single other person who wears the uniform. But Ron? Ron is different. Everyone knows Ron.

I remember the day that we formally met. Ron stopped me in my tracks as I attempted to blow by him. He asked my name. He shook my hand.

You don’t do that around these parts. For heaven’s sake this isn’t Tennessee. This is Boston. We don’t exactly go out of our way to be, well, you know, nice.

The building complex in which I work houses nearly six thousand people in close to two million square feet of space. We’re driven, we’re moving, we’re incredibly busy taking ourselves entirely too seriously. Self importance takes a lot of energy, you know.

On a good day we might smile, but we sure as hell don’t stop to ask one another’s names.

But Ron apparently didn’t get that memo. Ron couldn’t care less what everyone around him is doing. Accepted social constructs? Delightfully irrelevant.

Ron is Ron.

I watched him today as I picked up the Wall Street Journal at the newsstand. (Fine, it was Vanity Fair, shut up.) An endless stream of people walked by. Ron greeted every single person by name. He smiled at every one of them. And they smiled back. And they knew his name too.

If anyone knows Ron’s mom, I’d like to ask a favor. Please tell her that her boy is just fine. Tell her that he’s a whole lot better than fine. And tell her that we are all better people for knowing him.

the hardest thing

 

Restraint is not me.

It sits like an anvil on my chest, squeezing the air out of my lungs.

It reminds me, admonishes me.

Tsk tsk.

Approach slowly, gingerly – lest she run.

Every day, I fight to neutralize every molecule of my being, wrestling with my very nature.

Restraint is not me.

It runs contrary to everything I am.

 *

My love for my girls is a vast, wild, physical force.

It is not quiet or calm or tame.

It can be soft and gentle, but at its core it is fierce and messy and loud.

*

I hate being away from my girls.

I miss them every day.

The separation from them burns. I feel it on my skin, in the dull ache in my gut.

*

As I pull into the garage every night, the anticipation begins to build.

My heart beats faster as I reach the basement steps.

They’re closer.

I can feel them.

I’m home.

*

I can’t wait to squeeze them, to kiss them, to inhale them.

I live for their sweet smell, their soft skin, their laughter. Oh, the laughter!

I want to bound up the stairs in a cloud of electric energy, scream their names, scoop them up in my arms.

*

I don’t.

 *

Darby

Darby waits for me at the top of the stairs. We drink each other in.

Strong, potent, unfiltered.

I breathe.

*

Kendall

Kendall is nowhere to be seen.

I stealthily, carefully hunt her down.

I quietly sing-song, ‘Where’s my baby girl?”

A tiny voice repeats a long-practiced “Here I am.”

*

I reach her.

She doesn’t move.

I move closer, crouch in front of her, consciously smiling.

Fighting the overwhelming, visceral urge to grab her.

“Hi, Baby.”

“Hi, Mama.”

“I missed you today, little love.”

“You did?”

“I did. May I have a hug, sweet girl?”

“You may.”

I work my way in.

Finally I squeeze her. We laugh.

*

I brush away a tear as I head upstairs to shed my work clothes.

The fight is exhausting.

I just want to love her.

care package

The year was 1989. The setting – a small 4th floor dorm room off the quad on an idyllic New England college campus.

No surface was immune from the chaos that represented my life in that moment – a hopeless jumble of papers, assorted ashtrays gagging on charred cigarette butts, empty cans, bottles and half burnt incense cones.

I was completely overwhelmed. By my own hand, my prospects for staying in school were quickly unraveling. I had spent the preceding semester drinking in the extracurriculars of the college experience (often literally) while all but ignoring anything remotely related to academia.

By the time that finals rolled around in that first semester of my junior year, I was in a full fledged, self-induced panic. I was trying desperately to cram four months work into a matter of days, a vain attempt to salvage my flailing college career. 

My friend Paul sat on the edge of my bed surveying the damage and shaking his head. He never quite understood how it was that I got myself into these situations, but nonetheless, he always seemed to be there to help me pick up the pieces when I did. 

My dorm mates were all ensconced in their own rooms, emerging for meals or to blow off some steam before returning to their (more productive versions of) studying and paper writing. Once a day, the mail would arrive and someone would yell the good news throughout the hallways. A few lucky girls would go running off with care packages from home, friends excitedly trailing behind, eager to share the loot.

Paul opened my door as a girl breathlessly shouted my name from the hallway. He took the big brown box from her and handed it off to me. As we tore into my mom’s careful lettering, I wondered what we’d find inside. Oreo cookies? Peanut butter? Fluff? Three Musketeers bars? I could barely stand the anticipation.

Paul cocked his head as I pulled everything out. He looked confused as I removed the contents of the box and spread them on the floor around me. He didn’t ask why when I started to cry.

I had gained weight in college. Nothing overly dramatic, but at 5 foot nothing, the ‘freshman fifteen’ was pretty significant. Working at the local pub and subsisting on a diet of potstickers, hot wings and beer certainly didn’t help my cause. I had gotten rounder, softer. 

My mom was concerned about my weight. She mentioned it every time we got together and often asked how my diet was going, whether or not I had said that I was actually on one. Her maternal concern was perfectly natural and understandable, if not accepted particularly gracefully.

My mom had meant well. She had no doubt sent the package with a lot of love. I’m sure that when she picked out the rice cakes and the diet lemonade mix she did so with the best of intentions. She chose my favorite flavors and hunted down things she thought I’d enjoy.

And I was crushed.

Paul stayed with me for a while and then said that he had to take off. He said that he had a few things he needed to take care of and told me that he’d catch up with me later.

I did my best to focus on keeping myself in school. I attempted to devour Rousseau and make some sense of Hobbesian theory in a matter of hours. I finally nodded off somewhere in the middle of Plato’s Republic.

A couple of hours later, I stumbled out into the hallway. I nearly tripped over the new box that had been freshly deposited in front of my door. Resting on top of the box was a sheet of loose leaf paper, obviously torn from a notebook on my desk. The note read:

Dear Jessie,

This is what a care package is supposed to be.

Love,

Paul

The box was a veritable treasure trove of my favorite things (and guiltiest pleasures!). There was not a single thing in the box that was even remotely good for me.

Oreos (double stuff!), Slim Jims (extra spicy!), Diet Coke (in cans!). An elaborate assortment of the makings for the best Bloody Mary bar this side of the Mississippi - Absolut vodka, Clamato, spicy horseradish, crushed pepper, Tobasco, Worcestershire sauce, green olives stuffed with garlic, even fresh celery. 

That’s Paul.

He worked for every dime he ever had. That care package represented nearly a full night’s work at the bar where we slung drinks together four nights a week. 

All these years later, I still cherish my friendship with Paul, and now with his wonderful wife and two beautiful little girls. I think of him nearly every day.

I think of him on days like yesterday when I walk through DFW airport and see soldiers heading to or returning from war. I think of him when they are on line behind me at the airport Dunkin’ Donuts and I insist on buying their breakfast. I think of him when they look momentarily confused when they try to thank me and I well up and say that it’s the least I can do. 

I think of him when I stand for the national anthem or listen proudly to my girls reciting the pledge of allegiance. I think of him when I read about the political struggle to bring the soldiers home, when I hear about the ill-funded VA hospitals or when I hear the heart wrenching stories about children (like his) whose parents are oceans away. I think of him when I hear the tales of all of the heroes who live by their oaths to protect their fellow countrymen at any and all personal cost. 

I think of him with my heart in my mouth when I hear about helicopters going down in unforgiving lands halfway across the world. 

And of course I thought of him last week as Darby and I pieced together a care package to send to him in Afghanistan. As we scoured the shops for the best dark chocolate we could find (his favorite), I was right back on my dorm room floor all those years ago. As we headed to Starbuck’s for the coffee beans that he loves (his only request), I thought of the Oreos and the Bloody Mary bar. As Matt put together a library of DVD’s to help him while away the hours in the mountains (the only other thing he finally admitted to wanting) I thought back to the Slim Jims and how they made me smile at (what I thought was) such a tough moment in my life. 

And when Matt headed to Mailboxes Etc to send the package overseas, I thought of the selfless love and boundless generosity of my dear friend. Eight different kinds of dark chocolate, six pounds of coffee, ten DVD’s – we knew it wasn’t going to be cheap to package and send. It should have cost approximately $50 in supplies and postage. But this wasn’t a time to skimp.

The owner of the Mailboxes Etc franchise was at the counter when Matt arrived. They began to chat and he noticed that the box was being sent to an APO address. He asked where it was headed and Matt proudly told him about Paul – Blackhawk commander, soldier, patriot, friend.

The straight postage was $18. He charged us for nothing else. 

It’s contagious – generosity, selflessness, CARING. 

Dear Paul,

This is what a care package is supposed to be.

Love,

Jessie

(P.S. A grateful nation thanks you and your precious family and prays for your safe return.)

the little things

 

I haven’t been the kind of Mom that I want to be this week. I’ve been pulled in endless directions both physically and emotionally. I’ve been out of the house far more than I ever want to be, and the next few days promise to be even worse. 

When I have been home, I’ve been exhausted. I’ve been that mom that says, “Hey, how about a special treat! Let’s watch a movie together!” then drools on the pillow as the opening credits roll.

I fell asleep putting Kendall to bed last night. Through the haze I heard, “What number are you going to go in?” but it didn’t register until at least the third time she repeated it. I finally managed to get the eviction notice and stumble into my own room.

Try as I might, I know I’ve been cranky and ill-tempered. There have been far too many ‘not nows’ and ‘maybe laters’ and ‘please go ask Dadddys’. This will not be a week I’ll choose for the highlight reel. 

I was running late leaving the house yesterday morning. (If we’re being honest, I’m always running late lately. Somewhere around six months ago, late became my new early). The girls were still asleep as I left the house.

Kendall is almost never up when I leave, but Darby often wakes up in time to hang out with me while I get ready. We play games or make up stories while I shower. She helps me pick out clothes for the day. It’s not much, but it’s time.

I miss her, and I know she’s having a tough time this week. She’s not getting the extras - the hour here or there that means so much – that helps keep the balance.  

So I stopped on my way out. I dropped the frenzy along with my bags in the kitchen and found a piece of paper and a pen. I scratched out a simple note.

Darby,

Mama loves you so very much, sweet girl.

I hope you have a great day at school today. I can’t wait to hear about it on the phone later.

I love you more than the moon and the stars and everything in between!

Love,

Mama

Six lines on a torn scrap of paper.

I handed the note to Matt and I asked him to give it to her when she woke up. I asked that he make a point of telling her that it was just between us – that I didn’t write one for Kendall today. That this was just for her.

I made it home twenty minutes before bedtime last night. The girls were freshly scrubbed and buttoned into their jammies. Kendall was drawing at the table and Darby was folded into her cardboard box fort in the den. She was curled around her favorite thing in all the world, Benny the Blanket. Though Benny is actually a blanket, he spends his days looking more like a stuffed animal. He rolls into a soft rounded rectangle with a smiling little face and a big round nose. Darby adores him.

When I walked into the room, both Darby and Benny climbed out of the fort to greet me. Benny was looking a little disheveled and Darby asked if I would help re-roll him. I undid his velcro fasteners and laid him out on the floor. 

And there it was. Folded four times over and hidden in the depths of the one thing that she loves the most. The note.

She looked at me sheepishly as she grabbed it.

“Aw, Darb,” I said. “You kept the note?”

“Of course I did, Mama!” she said as she clutched it to her chest.

She added softly, reverently, “It’s from you.”

We can’t always do the big things. We can’t be in all the places we’d like to be at once. We can’t give them all that we want or even all that we think we should.

But we can do the little things. We can leave a note that says I’m here – even when I’m not. A reminder that we love them more than anything in the world. 

Because it seems that the little things mean an awful lot more than we think.

batteries not included

 

I have spent the better part of a week now moving at warp speed. The world has been a blur of movement around me as I’ve scrambled to find my footing atop a rapidly shifting landscape.

Survival mode is exhausting. Anxiety has stolen any hope of peaceful sleep. The constant whir of activity and stress has eclipsed any time or motivation I may have had to exercise. I’ve been eating like I have a tip on a famine. Bottom line – I feel like crap and I look worse. The dark circles under my eyes are buying His and Hers towels. 

On Saturday morning, I was sitting in the big chair behind the desk in our office seeking escape on the computer screen. As I surfed through blog land, Kendall rooted around in the drawers of the hutch along the wall. Her little hands overflowed with what she had found there.

Clutching her loot, she made her way over to where I sat. She swung a knee up onto the edge of my chair and pushed my body ever so slightly forward. She lifted her cupped hands to my neck and emptied their contents down the back of my shirt.

A handful of AA batteries made their way down my back and spilled out the bottom of my shirt onto the chair below. Without a word, Kendall scooped them back up. She lifted them up under my t-shirt and into the center of my back where she pressed them into my skin.

Holding them there, she peered around to look at my face. She was checking, I suppose, to see if it had worked.

Had Mama been successfully recharged by a handful of Duracells?