Paper Cuts That Don’t Heal

Parker on the run...

I am not afraid of inflicting great emotional injuries on my daughter. I don’t call her names, compare her to so and so, or tell her she’s ruined my life. I don’t send her to bed without dinner, or banish her to her to her room for hours behind a locked door. I don’t threaten her by telling her that my continued love for her is contingent on her actions.

I don’t do any of those things, because I know from first-hand experience how much they hurt. I have felt just how deeply these wounds can go and how long they take to heal – if they ever do – and I vowed never to inflict those injuries on either of my children.  It is a vow I have not broken.

And so, I am careful not to cut too deep. I am conscious of the power within the words I wield. I know that these things stay with children, and I think of them as the wounds left by an ax within the trunk of a tree. As that tree grows, more and more rings will form around the gash. Though shielded from view, the results of the injury remain – a scar – which while it may be deeply layered beneath years of growth, will never fully repair itself.

Everyone carries these scars with them. Whether they were inflicted by parents, friends, ex-lovers, teachers, bosses, husbands – they are there, and permanent, and both easy to recall and painful to relive if we allow ourselves.

And it is fairly easy to be certain if you are throwing those axes. We brandish them – as offense or as defense – when we feel we need to, but knowingly all the same. It is often purposeful, even when we feel we can claim a justifiable purpose. Especially in those cases.

But what about the moments when you are not throwing axes? When these may not be major lacerations you are inflicting?

What if it’s just a paper cut?

There are moments lately – a lot of moments, when I have had enough of my five year old and some of her recently developed habits.

She is full of spirit and affection and eager to please.  She is so proud that she has recently learned to read, and is earnestly poring over everything from books we get from our trips to the library together, to the junk mail we receive each day.  She just about glows when she hears you say you’re proud of her, that she has done well, that she is a “big girl”.  She is learning to be more patient with her brother, showing him more empathy and including him often.  She has adapted the games they play together to be easier for him to follow – even if “follow” just means he is literally just following her around the house as they play Hide and Seek or pretend to be spies – or Secret Cajuns as Parker thinks that particular vocation is called.

She is also a precocious back-talker, seems to be taking her cues on mood changes from the rounds of ping pong we played on our recent family vacation, and she has mastered the art of non-verbal griping with a variety of admirable – if ear-splitting – yowls, moans, and wails.

She is truly a whine connoisseur.

There are always reasons for these sob-fests – it’s just that the majority of the time, I am not privy to them.  To be honest, I’m not sure that she is privy to them.

And there are times when I have the patience and the empathy to try to understand what she is feeling.  There are evenings that I have the emotional capital left over to let it roll off of my back and try to put myself in her shoes.  There are afternoons that I can calmly rationalize that this is a phase and take the time to sit with her and talk about how she is feeling and why. There are mornings when I know that it is up to me to ensure that her outburst isn’t the way that day begins for either of us, that only I can resuscitate the situation that has left her breathless and howling.

But there are days – whole days it seems – when I cannot do any of that.  When I am too overwhelmed by whatever I have going on, or when my patience has been spent. When I am exhausted. When I have started the day off writing something truly difficult, or I have started the day off having true difficulty writing anything at all.  When I am heartbroken by another setback of her brother’s, or concerned there will be one on the horizon.  When my husband and I have been bickering.  When I am hurting, or restless, or distracted and don’t have any more room for those emotions.  Or when I am finally feeling happy, and content, and optimistic, and resent having those emotions interrupted.

And I know that is wrong, that it is bordering on blasphemy to have feelings that go beyond the well-being of your child. I understand that it is an offense punishable by public whipping on a pillory to resent your child for raining on your parade, or for flooding the streets by adding to the the precipitation when the rain had already begun without them.  But I am not just her mother.  I am also a woman – I am just a person.  Full of faults and brimming with things that go directly against the proverbial shoulds that our society – or at times our own conscience – demand.

And so on some of those days that I have run out of tolerance, I brush her off.  I ignore the tantrums and let her resolve them on her own.  I send her to her room until she is able to calm herself down.

These are not the moments I am ashamed of.  The moments that worry me are what I call “paper cut moments”.

Paper cuts do not cause any permanent harm.  No one without a rare and serious medical condition hemorrhages to death from a paper cut, and stitches are not required.  While not overtly injurious, they do sting.  Adding insult to minor injury, they also tend to stick around for a while.

It’s the moments when I am harried and hurried and trying to get her and her brother out the door and to school on time and she chooses that exact moment as the perfect one to show me the latest drawing she’s made.  Or the approximately eleven times a day that she waits until I’m on the phone to strike up a conversation with me, despite having been completely silent for the previous fifteen minute drive home from school after I repeatedly prompted her by asking about the details of her day.   Sometimes it’s the way she takes a painfully long period of time to make what should be a simple decision – like which pair of white socks to wear that day, or whether to have blueberries or strawberries with her lunch.  Occasionally, it’s the full cup of juice spilled during dinner – soaking her plate. And the chair. And the floor. And if it’s the end of a particularly trying day – my will to live.

I am well aware that these are not examples of her shortcomings or character flaws, they merely end up highlighting mine.

In my constant state of rushing, and moving, and juggling – my life usually feels as though I am on the precipice of chaos, and that’s on the days that I don’t feel as though I reside directly within the eye of a chaos hurricane.  I’m thinking of having my mail forwarded there.

Parker, I can’t right now.  We seriously don’t have time for this at the moment. I tell her in a clipped and dismissive tone.

Paper cut.

I’m on the phone. Can’t this wait? You’re interrupting again and being rude. I respond, clearly irritated.

Paper cut.

Seriously, Parks?? The entire cup of juice? I exclaim with annoyed disbelief.

Paper cut.

I’ve had enough! I am in the middle of something! I say through gritted teeth.

Paper cut.

And I see her face fall.  And sometimes I regret it instantly and apologize. And sometimes it takes me a few minutes. And sometimes I’m genuinely annoyed with her and it takes hours. And sometimes, I’ll admit, I never get around to it at all.  But the damage has already has been done once those words leave my lips.  Feelings have been hurt.  Little people have been slighted.  The paper has made its infinitesimal – yet effective – slice into skin.  And when our children are hurting, we hurt for them too.

There has been no major bloodshed and none of this will go on to be the topic of a conversation she will have in 40 years with a therapist while recumbent on a couch in a musty room lined with books, Well, that time my mother snapped at me for spilling my cup of juice when I was five?  Yeah, I’m pretty that was the turning point for me – it must be the reason why I have trust issues and can’t carry on a relationship for longer than nine days and have seventeen cats.

Because paper cuts heal, right?  A few days of wincing after you’ve reached for the hand sanitizer and feel the burn of the alcohol to remind you of this relatively tiny fissure, or while shampooing your hair, or removing your nail polish with the highly unpleasant sensation brought on when acetone meets an open cut – but then it’s over, it heals without a trace.

But what if some of those paper cuts didn’t heal?  What if those words I’ve thrown out at my sensitive and perceptive girl leave marks I cannot see?  That is what I fear most.  It’s the bits of pain that linger well after they should have been healed.  The words we carry around in our heads, that lay heavy in our hearts long after they should have been forgotten. I can remember those words that have been said to me by others – regardless of my attempts to move on.  I fear the same fate – the same burden – will be cast upon my daughter, and worse, that I will be the one to cause it.

Not deep wounds, just paper cuts.

But what if paper cuts don’t heal?

 

 

Writing Process Blog Tour

Where the magic happens. And the self-doubt.

Where the magic happens. And the self-doubt.

I was beyond excited when Jessica Smock invited me to participate on this Author’s Writing Process Blog Tour.  I first met Jessica when I came across the phenomenal website and concept that she and a fellow writer, Stephanie Sprenger had come up with, The HerStories Project. It was made up of a series of essays by a variety of writers each sharing their compelling and relatable stories of female friendship – and was eventually published as an anthology with Jessica and Stephanie as the editors.  I consider myself lucky to have had my submission included in the book!  Jessica has her own wonderful blog, School of Smock, and you can read her entry for the blog tour here.

While I will occasionally catalog the days I’ve written with a post on Instagram accompanied by a few words, I rarely talk about what and how I write in any sort of extensive detail.  I have no idea who came up with this, but I am grateful to them for allowing me to share my process, but more importantly, for the opportunity to read about how other authors treat these moments with their laptops and/or pens and notebooks that we all hold so sacred.

1. What am I working on?

Aside from the occasional blog post for Our Stroke of Luck, or pieces for the Huffington Post, Dot Complicated, or some of the other websites that have recently contacted me to write for them, the majority of my time is spent writing my memoir.  This labor of love encompasses my childhood, how it has affected me as I have ventured into motherhood, and how murky those waters became when we were told that my second child, my son, had suffered from a stroke within the week prior to his birth. I am somehow more than halfway done, and yet only have two completed chapters.  I am learning that deciding to just sit down and write has so much more attached to it that nobody tells you about.  Or that everybody tells you about and you can’t quite grasp until you make the attempt yourself.  There is the fear of having it come out badly and then knowing you’ve wasted your time – sometimes years of your life – on something that will eventually just collect dust somewhere in the corner of the room.  There is the weight of revisiting the hardest moments of your life – at times, feeling as though there are bricks tethered to your limbs, your heavy heart, as you write.  I can only hope that the density of those emotions I feel will be lightened as I transition them from living with them inside my head, onto the page.

2. How does my work differ from others of its genre?

There are plenty of memoirs out there.  There are plenty of memoirs out there written about motherhood – even motherhood as it pertains to raising Special Needs children.  I think my writing differs from that of others I’ve read, in how I speak to those that read my work.  There are so many wonderful memoirs, blog posts and articles out there that try to help people by telling them what they themselves have gone through in an effort to show them the light at the end of the proverbial tunnel, they try valiantly to pull people out of the dark places they find themselves in.  What I needed when I first had Owen and it felt like the world was caving in, throughout that first year and during some especially rough times that came farther down the road, was not a book that I felt was the equivalent of someone pulling me out of the hole I was in.  It was the book that made me feel as though someone was crawling in there with me.  That is the book I am trying to write, the work I am trying to do.

3. Why do I write what I do?

Both my memoir and my blog posts and articles are written based on a desperate need to get these words and thoughts and feelings out of me.  My process is quite literally the way I process.  If left unwritten or unsaid, these feelings of anxiety and frustration, of worry and those ever-nagging “what ifs” that I’m plagued by, will fester within me and threaten to wreak havoc on everything from my sleep to my ability to choose between Granny Smith and Macintosh apples at the grocery store.  Another huge benefit to writing, lies in the incredible responses I get from those who read my work.  I have rekindled friendships with high school and camp friends I haven’t seen in almost twenty years, and struck up new friendships with other writers I’ve met both online and in person.  Some of the most rewarding exchanges I’ve had recently have been from strangers – people who have told me that I was able to put into words what they have been trying to tell their friends or families, but had been unable to previously.  Plenty have commented on my blog or on posts of mine on other websites, that things I’ve written have made them feel less alone – less isolated – knowing someone else shares the same emotions.  What they often fail to realize is that it works both ways – every time someone tells me that I feel the way they do, it make me feel a bit less alone, as well.  While connecting with others wasn’t one of my primary antecedents to writing, it has certainly become a tremendous part of why I continue on.

4. How does my writing process work?

My writing process truly depends on whether I’m writing for my book or writing a blog post.  If it’s a blog post, I rarely plan when or what I’m going to write.  I usually feel compelled to just write when something really hits me hard.  99 percent of the posts on my blog were the result of sitting down and just letting my fingers fly as my emotions pour out of me and onto the screen.  Some part of me feels like the authenticity that those who read my blog always comment on would be sacrificed in some way if I did too much editing, so I rarely do more than go back over it once looking for basic spelling, grammatical and punctuation errors before pressing “publish”.  That likely explains why I usually find so many more those times I ever go back over to reread them…

When I’m writing my memoir, I have found that waking up super early is my very best and most productive time.  My friend Aidan, who herself is an author and currently working on her second novel, had been given Mason Currey’s book Daily Rituals (ironically, by my now-agent who represents him).  She told me how fascinating and helpful she had found the various detailed accounts of how so many famous writers, artists, poets and composers worked, and how it inspired her to try different ways to work, too.  After reading the book myself, I was able to tap into the same enthusiasm and found that 5:15-7AM is just about the most perfect time for me as far as productivity is concerned.  This is not to say I enjoy waking up almost two full hours before the rest of my family, just that it seems to be the best time for me, making the loss of sleep worthwhile in the big picture.  It is truly the only time that my often guilt-ridden, easily-distracted and “productively procrastinating” self (trust me, it can be done) can make no excuses that there is something else I would or could be doing.  There are no errands to be run, calls to make, or items to be crossed off of lists.  It is my time, and it is time to write.  I make my coffee the night before and set the machine to begin brewing at 5:10AM.  Every morning, when I stumble down the stairs bleary-eyed, it is a veritable Folgers commercial – by the second or third sip, I am wide awake and ready to go.  And by “go”, I often mean stare at my blinking cursor and break into a sweat as I swear that yesterday was the very, very, very last time I was going to ever get any quality prose out ever again. Ever.  But other times, it comes out of me – and easily.  I know precisely what I want to say and exactly how I want to say it.  It is on those mornings that I find that time has seemingly flown by when I first pick my head up momentarily, only to realize that I have just a few minutes left before “real life” starts and there are lunches to be packed and hats and mittens to be donned.

This are the mornings I find myself disappointed that my early-morning moments are coming to an end for the day, and look forward to waking up in the pre-dawn hours of tomorrow. Those are the moments when I know I’m doing what I was always meant to do.

A particularly rough morning.

A particularly rough morning.

Next week, the tour continues with two incredibly talented writers, Allison Slater Tate and Lindsey Mead.  I am fortunate to call both of these women friends, but they are also deep sources of inspiration for me – something I’m sure you will find as well.

Allison Slater Tate writes her self-titled blog about all things motherhood and womanhood, in simultaneously the most heart-wrenching and hilarious manner possible.  She has a unique talent for making me (and surely others) both laugh and cry within a singular paragraph, and has the distinct honor – and bragging rights – for having had her viral piece “The Mom Stays In the Picture”, quite literally break The Huffington Post.  Now, that’s badass.  I alway enjoy Allison’s work, and now know I can also count on her to not tweet photos of me I may or may not send her while I may or may not be stuck in a too-small article of clothing in a public dressing room.

Lindsey Mead shares her thoughts, experiences, and incredibly beautiful prose on her blog A Design So Vast.  I first “met” Lindsey after reading her wonderful, relatable and popular piece “This is Thirty Eight” on HuffPost. I did something I’d never done before, and wrote her an all-too-lengthy email almost immediately after I was done reading it.  I could identify with so much of it and felt so understood, and I wanted her to know how much I had been touched by the vulnerability she had put out there for her readers.  Lindsey wrote back immediately, and the friendship blossomed from there.  I have so much respect for what can only be described as the depth of Lindsey’s well of emotions.  She feels everything with every bone in her body, and has such a tremendous gift with words that her readers feel it right along with her.

28 Days of Play

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I was so honored when my friend (and parenting expert) Rachel Cedar of You Plus Two Parenting invited me to be a part of this wonderful series on how one what would seem to be the simplest aspects of parenting – playing with our children – has somehow turned into one of the most complex.  For so many parents that I know, playtime is wrought with as much guilt as joy, and as brings as much avoidance and ambivalence as it does bonding and whimsy.

In my post, I talk honestly about the fact that I feel as though I don’t even really know how to play with my children – as though I missed that master class while I was attending to other things in the cyclone of insanity that ensued in the first years after Owen’s birth and multiple diagnoses.  When the dust settled and I looked around, there was Parker, looking up at me with her big green eyes, asking me – “Mommy, will you play with me?”

Please read on to hear a detailed account of what I did next, what it showed me about motherhood, and where I’m hoping to go next.  I highly recommend that you also peruse some of the other wonderful posts by some phenomenal authors about their own experiences with play…  Some of what we all think will come most naturally to us as parents, often creep up and surprise us as becoming the most challenging.

“Mommy, Will You Play With Me?”

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What I Saw When I Finally Looked Up From My Phone

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This is the only family photo I have from our vacation last week.

I only have a handful of pictures from our family vacation last week.  We escaped the “Snowmageddon” that dumped more than seventeen inches on the Northeast for what is now our annual trek to Florida in February.  The weather was as close to perfect as we could have hoped for, the sunsets were spectacular, both of my children had a wonderful time, and my husband and I finally got a chance to reconnect away from the rushed and harried life we live at home.

And I have almost nothing to show for it.

It’s not that I was making a conscious choice not to take pictures, it was that I was making a conscious effort not to post them on Instagram, or put them up on Facebook, or tweet them.  I was taking a much-needed break from social media – something that is neither original nor uncommon these days.  Some people have “Digital Sabbaths” rules of no tech at the dinner table, or after a certain time of day – for me this felt right…and necessary.

The fact that by the third day of our trip, I turned to my husband and said “I haven’t made you pose for a single ‘selfie’ with me yet!” and was somewhat shocked by it, said a lot to me.  It made me ponder the reason and the audience I take all of those pictures for.  I am somewhat ashamed to admit that I realized that the hundreds of photos I usually take, and make my children and husband and – well, chickens I roast and pies that I bake – pose for, are not for us.  They are for them.  Those people out there that are also spending a lot of their time looking down at the phones they have glued to their hands.  The time I spend with those hundreds of photos I cull through trying to find the one that looks the best, then searching for the perfect filter to further enhance it, writing the witty/sarcastic/touching caption that is most fitting – while I am going through all of those steps for these photos I have taken, I am looking down.  I am missing the rest of it.  I am impatient and only half-listening to my children or my husband in the moments after the photos have been taken while I go through this process.  That’s not even counting the embarrassingly high number of times that I repeatedly go back to check how many “likes” and comments the photos have garnered and by whom.  It’s self-centered, and insecurity-based, and shameful to admit…but it’s true.

I not only suffer from the widely discussed FOMO (or Fear of Missing Out), but I apparently also suffer from the much lesser known conditions FOBI (Fear of Becoming Irrelevant) and FOBF (Fear of Being Forgotten).  These conditions are not widely discussed, mostly because I just made them up (the latter of the two clearly needs some work based on the awkward pronunciation challenges it faces).

There were many things I missed while I was away – most notably a monthly Writers’ Salon at a friend’s home that I look forward to.  Adding insult to injury, the writer that was featured this time was someone whose work I really respect and whom I have gotten to know personally. There were plenty of other writers and friends that I knew that would be there that I either hadn’t seen in a while, or had never had the opportunity to meet in person as of yet.

And I was disappointed to be missing that, among other things.  And I took this break from Social Media partially so I wouldn’t feel badly about the things I was missing while I was gone.  And when I stopped looking down at my phone to see what I was missing, I looked up – and saw what I was missing.

Instead of grabbing my phone to put the funny quip my husband had just said onto Facebook, I laughed until tears sprang out of the corners of my eyes.  Instead of Instagramming photos of my kids digging in the sand together, I dug moats and looked for shells with them.  Instead of using my phone to shield the sun from my eyes as I scrolled through tweets and Facebook updates, I put my phone away, silenced the ringer, and simply closed my eyes – listening to the sounds of the bay (and the woman incessantly talking in a rather shrill voice about the horrible weather in the Southeast and how many times it had snowed in Texas in the past twenty years – I mean, really?? It’s called the “Calm Pool”, lady!).

But I didn’t tweet about her.  Instead, my husband and I made little jokes about it and rolled our eyes together.  And my children kept saying “mommymommymommy” to me all week, but it wasn’t because I was tuning them out while looking at my phone – it was because I was busy talking and listening to one of them and the other wanted my attention.  I had more patience and less guilt, more fun and less bickering, more connecting and, well, more connecting.  The FOBI and FOBF targets I should be worried about were right in front of me.

And there were some pictures taken – a handful of the kids at the beach, a few of me attempting the trapeze (apparently I am afraid of some heights – the guy who assisted me at the top didn’t recognize me the following day until I reminded him that I was the one who kept repeating the mantra that only had one word in it – and it wasn’t “luck”), some stunning sunsets, one or two “selfies” my husband and I eventually did take together, and just one single photo of all four of us together.  It is a bit blurry, and some of us have red-eye, and the flash was too bright, and my son’s eyes are half-closed and he is looking away – but we are all smiling.  Real, genuine, we-are-enjoying-each-other-and-this-is-not-the-seventh-time-we-are-posing-for-this-picture smiles.

And I am looking up.

A Case of the “Last Week’s”…

Fourth birthday

I haven’t written about Owen’s fourth birthday yet.  Every year I have written a birthday post, and yet this year it has been more difficult than in the past.  I wasn’t quite sure why until this morning.

It was two days ago, on Wednesday, which was a snow day for us here.  I walked into his room and said Owen, there’s no school today! and he responded immediately, Yeah, cause it my birt-day!

I didn’t have the heart to correct him and explain that the schools closed based on meteorological factors, rather than that the school board had decided that the occasion of his birth warranted an additional holiday built into that calendar.  He was overjoyed that he got to wear his favorite light blue flannel bear pajamas all day, and I scooped him out of his bed and deposited him in ours for our morning session of a bottle of milk, and cuddles, and Sophia the First.

And I should have been happy, sweetly satisfied that day, at that moment.  This day should have felt like a celebration – something to look forward to.  If only I could stop myself from looking back, from feeling those feelings from that exact day four years earlier washing over me at random intervals. If only looking forward had more clarity associated with it, rather than being shrouded in the mist and fog of Will he be able to…? and What if he can’t…? and Will he ever…?

And I can’t stop myself, much as I desperately want to, from thinking about and comparing him to his sister and where she was on her fourth birthday.  It wasn’t much more than a year ago – those memories are still fresh in my mind.

She eagerly anticipated her birthday, talking about it for weeks beforehand, while he doesn’t understand the concept of time at all and anticipation is something that comes to him and leaves him as quickly as the old In one ear and out the other adage.  You tell him about something coming up, and his face lights up and he says Das coo! (That’s cool!) but then it is immediately forgotten – quicker than you can say Look at the pretty birdy!

Complicating things further is his adorable new habit of applying his only concept of time to literally everything.  Everything, I mean everything happened last week.  Except Owen says it with an accent.  Like a 75 year-old Italian man selling cannoli on Mulberry street.  Ah-lass uh-weet.

Me: Owen, we are going to go to Florida soon!

Owen: Yeah, we go Fah-rih-duh, ah-lass uh-weet!

Me: Owen, you need to go to the bathroom now – before we leave the house.

Owen: No, I no haff to. I go potty ah-lass uh-weet.

Me: Owen, it’s you’re birthday tomorrow!

Owen: Yes! My birt-day ah-lass uh-weet!

And then last week became today. And he was excited. But it felt like he was matching our level of enthusiasm, more than exhibiting his own.  And we didn’t experience joy as we watched him unwrap his presents, because we decided not to wrap them at all after he had needed us to do it for him, becoming frustrated and confused – confounded by these seemingly arbitrary boundaries that separated him from all of the new toys they likely held – after his birthday party this weekend.  And that was after Scott and I went through all of his gifts while he napped, before he even saw them, to make sure we could ferret out all of this toys that might make him stim, or that could potentially be used as weapons against Parker, or us.  We realized the importance of this after a well-meaning and sweet gift last year from my friend Sarra, saw a Tinkertoy stick used in an attempt to cause permanent ocular injury to Scott.

That man doesn’t curse often, but we were both grateful that afternoon that Owen only had about a dozen words and wasn’t at the point of repeating language at that point (silver lining?).

And I am not comparing him to his sister in terms of words like better or worse.  I am not wishing he were more like her, or less like himself.  They are just different, and I am only human in noticing that.  If anything, I wish that were less like myself and somehow able to just exist in the present more – without looking for the elusive answers to all of those What ifs.

It is a hard-won battle to accept that you cannot sing Happy Birthday to your child as candles illuminate both his face and the cake they stand within, because he will cover his ears and scream Too loud! at the top of his lungs in a repeat performance of his birthday party just days before.

But it is also a wonderful surprise when you have the opportunity the following day, to hear the children in his class whisper-singing that same iconic song to him, at the prompting of his beloved teacher. To see him beam with a light immeasurably brighter than those candles.  How lucky he is to have her, to be in the care of those who have the experience and patience to work around it all, to see where and how and what needs to be altered in order to allow him to experience the simple joys he deserves – joys like a serenade on his birthday.

It was something that he had tried to tell me the previous evening when his request for our nightly cuddle and song before bed was that very song he had refused an hour earlier.  It wasn’t that he didn’t want to hear it – it was how.  And so I sang Happy birthday to my son on his birthday – softly, with my face buried in his soft hair, in his darkened room, on that same navy-blue glider I have rocked him in every day since the day he came home.  And I cried the sweetest tears of happiness – for him, and for me.

I am learning that it is not what you can’t, but how you can.

He is teaching me, his teacher is teaching me, that you can’t keep looking back at what was – at how I thought it was supposed to be or how I think it’s supposed to be done – that’s all so Ah-lass uh-weet.

And the future?  Well, that’s Ah-lass uh-weet, too – according to my little man.

So now is where I will do my best to stay.

Because I am learning that the best birthday present I can give my boy is to actually be in the present.

Happy birthday, Baby Bear.

Mommy loves you from here to last week.

What Can Be Mended, And What Cannot.

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There is something to be said for those small moments, moments where there are things we can fix, band-aids to be applied, kisses to be given, scotch tape, and glue, and staples…

And there is something to be said about the needle and thread I hold now in my right hand, as I clutch a little blue and gray sock monkey we found in the back of my almost-four year old son Owen’s closet yesterday as I was doing some New Year’s cleaning.  He asked to bring it into his crib to join the menagerie of dolls and stuffed animals that have nearly overtaken the space where his little body goes to rest, and I said it was fine, only stopping him when I happened to glance over and saw some stuffing emerging from the little monkey’s right leg.

I assured my boy that I would fix the monkey’s “boo boo” and return him right after Owen’s nap.

And I sit here now, clutching this little monkey, and find myself suddenly confused as to why I am weeping as I lovingly sew his injured leg back up.

Something so simple – a needle, some thread – can fix so much.  It’s something so maternal, so natural, to want to mend, to care for, to fix as a parent.  It is something that I can easily do for this silly monkey, and yet feel as though I am constantly failing my son in that same respect.

Where is the beautiful simplicity of the needle and thread to fix him?  He is not broken in the sense that I would return him, or want another version that needed less repair – but there are so many parts of him that need to be worked on, that need to be mended, that are misunderstood, or baffle the broad community of specialists and therapists and doctors we have built up around him like a fortress.

And still, there he stands, as though in some sort of bubble that we cannot break, cannot pierce, in order to understand him, to save him from himself and others that don’t understand him and – that don’t, or one day won’t – care enough to try before rejecting him.

Where is the needle?  Where is the thread?

How did this little monkey become a symbol for how simple it was supposed to be?  How much my dreams for my boy have had to be continuously ripped open, then sewn back up with a thread that is clearly not strong enough to hold.

What if I am not strong enough?

How do I mend him?  How do I help him?  I think I am doing what I can – maybe even all I can – and it never feels like enough because something new always comes out.

His speech is improving, and his behavior is deteriorating.

He understands more, but I understand him less – he screams at an eardrum-perforating pitch with clenched fists and tears springing to his eyes and cannot tell me why.

His sister is embarrassed by him.

Sometimes, I am embarrassed by him.

Oh God, that’s so horrible to say, but it’s true.  Sometimes, it’s just true.

And I’m not supposed to feel that way because I have a Special Needs child.  It would be okay if he were typical, and screaming his head off in the lighting section of Target.  It would be funny to complain or tweet or post a picture somewhere of my tantruming almost-four year old.  I would have other moms shaking their heads because they can relate, they’ve been there.  There would be reassuring comments on Facebook or Instagram, and funny little vignettes via text from friends regaling the times something similar had happened to them.

But not if he has Special Needs.  There are different rules.

I’m supposed to say he has the Autism “Super Power”, or the “Magical” brain malformation gene where he has the ability to make part of his brain disappear from the MRI images right before your eyes (only to have other parts magically appear as a dark cloud within his gray matter all at once – also called a Stroke. Or would that be an “enchanted” Stroke”?).

Do I sound somewhat bitter and jaded about some of this?  Well, I am.

I am not that mother – I don’t buy into this being a super power, or magical gene.  Nothing about this feels otherworldly. Unbelievable, maybe. Dream-like?  Occasionally – but not in a good way.  There have been no unicorn spottings here, no leprechauns, we don’t even have a box of Lucky Charms in the house (partially because food coloring “magically” turns both of our kids into maniacs).  I dearly wish I could be – that I had that cheerful outlook and optimism that I see and hear about and read about from so many other mothers in my situation.

For me?

It. Just. Sucks.

Do I love my son? Absolutely.

Do I wish that he didn’t have this myriad of diagnoses? Yep.

Do I wish I could magically fix him (for whatever that word means here)? Of course.

But I have not found that thread yet.  I have not seen evidence that it exists alongside these “super powers” and this magic that we have supposedly been “lucky” enough to inherit along with Owen’s genetic soup.

So we will try, and we will fail, and we will succeed, and we will have triumphs and setbacks, and I will keep my sewing kit as fully stocked as I possibly can.

Because there is always mending to be done.

Because I am his mother.

And he is my thread.

2013 Owen

The Deep End

Window Gazers

There are moments when I wonder what exactly this is doing to me – to my family – this writing, this memoir I’ve been working on for almost two months now.  Memories are being unearthed, emotions felt more concentrated than ever – once a river that flowed freely in and out, is now something more of a small pool that I find myself standing in.

I cannot just wait for the water to rush by me – I need to find ways to climb out of it.

Some days are easier than others – I’ve only dipped my toes in, or I’m ankle-deep.

On other days, I’m up to my neck in it – teeth-chattering and fingertips shriveled to raisins after being immersed in those waters, after typing for hours.

On those days, I feel a deep fear followed by a sense of freedom.  Like a bad dream I am letting go of by writing it down, by telling someone – even if it’s just the blinking cursor on my screen that is my trusted confidante for now.

But much like a bad dream, I cannot always just shake it off, I am haunted by these memories, these feelings I have finally allowed to bubble to the surface.

And there is a darkness in the hearts of people who are haunted.

There is a light that has dimmed behind their eyes.

I am not writing these words in a cave, or on a remote island somewhere – I’m not even writing them in an office or a room of my own.  I am writing them at the desk that stands in my bedroom, with my husband sleeping in our bed – his loud breathing reminding me that there are still people here that need me, that expect me to be present.

I cannot afford to go off the map.

This world that I am looking back on is also one that I am still very much immersed in.

Everything that I write about – the struggles, the triumphs – they are still ongoing.  They need to be witnessed – to be really, truly seen, and eyes that have had their light dimmed cannot see what is in front of them very clearly.  A mind that is lost in things that occurred three years ago – or 23 years ago – cannot fully absorb what is happening in this moment.

And I am wanted in this moment.

I am needed in this moment.

Because one day this moment will have happened three – or 23 – years ago, and the regret I will feel about missing it will likely threaten to drown me in sorrow, in sadness that is so much deeper than any I might be feeling now.  There is no second chance for missed opportunities to watch your children growing up. To hold hands, and break up brother/sister fights. To listen to silly made-up songs and know the difference between a fall that truly hurts, or when it is their pride that has been bruised – when they need an ice pack or when a hug is the best salve.  To glow with pride at accomplishments both big and small and to hold on tight after setbacks.

There is no “next time” when your five year-old daughter has a huge accident in her carpeted bedroom and you need to choose whether or not to shower her with compassion or anger.  I had the energy for empathy this time, but there are plenty of moments that I feel shame at the lack of sensitivity I exhibit towards them – I worry that I am too quick to show the frustration I am feeling.

I am ashamed that I am writing about my experience as child, my experience as a parent – and that there are moments when that choice makes it difficult to be a parent, and to see my children.

But I am learning.

I am determined to do better, to be better.

To chase this dream of mine, while successfully nurturing my marriage and raising my children to believe that their dreams are achievable as well.

***At this moment, I just realized the incredible irony within the water metaphor…***

I am a horrible and weak swimmer.  I am uncomfortable in the water – always have been.

As a result, I insisted that both Parker and Owen take lessons from a young age.

They love it.

They are naturals in the water.

What seems like an intimidating ocean to me, presents as a welcoming pond to them. They frolic in the exact place I fear.

I have given them the tools to do what I never could – at least in this one respect.

And day after day, they keep me afloat – they keep my head above water – despite all that has threatened to pull me under.

At the very least, I owe it to them to bear witness as their strokes grow stronger, as they fearlessly jump in where I would have sat tentatively on the side with only my legs dangling in.

Ankle-deep or fully-immersed, I need to make sure that I can pull myself out of that water each day.

If only so I can watch them dive in.

A Dream Come True

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I am a published author.

My heart beats quickly as I type that, as I read it over and over again and it begins to sink in.

This is truly a dream realized.

I get giddy when I look at my Amazon Author page, when I see this incredible book up on the website, when I think about the marvelous and inspiring 49 other women I am lucky enough to be included with here.

It fills me with pride, it gives me hope, I can do this.  This is happening.

This will not be the last time I have a book with my name in it.  

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And I am happy here, now.  I am enjoying the ride.  The amazing women I have met on this journey, the talented and thoughtful writers who have allowed all of us to see into their souls, into the friendships that have made and broken them.  We have all been there. We all have these stories to share.

Stories of loving and losing, of reconnecting after decades, of holding each others hands through both the darkest and brightest of days.  So many of us call each other “sister” – whether it’s by birth or by choice.  We are in the foxhole together as we find our way as women and mothers and wives and professionals and human beings.

These are all of our stories, and they are your stories too.

Please support me and my fellow writers by purchasing this book – give it to your friends, your sister, your daughter, your mother.  Tell them that their friendship and love – that the story you have created together – means something to you.

It means something to me.

The outpouring of friendship and love and support that I have received here, means something to me.

Please consider buying a copy (or copies!) of your own by clicking on the photo of the book below, but also please tell me a story of your most valued friendship in the comments section below and I will give away a free copy to one of you – chosen randomly, as to not play favorites – that shares your tale of friendship…

Screw You, Autism.

One Man Band

Something else has changed.  Again.  Something else has shifted in our lives.  Imperceptible to anyone but us.  How a single word – perhaps a word we were expecting, that we found unsurprising even, can make me crumple to the ground in a heap, I know I should understand as a writer – as someone who attempts to find the power in words – but I don’t.  I am still at the mercy of the people who yield these words, I am still crippled by them.

Autistic.

The words she uttered afterwards like “high-functioning” and “cognitive potential” were cold comfort after that word.  I asked her outright if it was really true, if it was really so.

Off the record, I began And I apologize if this is unprofessional, but I have to know for myself, I have to know the truth – are you labeling him as Autistic because he desperately needs these services or is he actually Autistic?

No, She replied while gesturing towards the seemingly endless numbers and tests results and percentages and age equivalents she had just spent more than an hour going over with us…

He’s actually Autistic.

I felt my eyes well up with tears and my lower lip tremble.  I heard my voice begin to shake while I asked the question, but managed to get through it without letting my emotions pour out onto her vast mahogany desk.  I didn’t dare look over to my left where Scott sat, just out of arms reach.  I knew, from the variety of meetings and diagnoses and news like this before that I could not look over at him.  That if our eyes met and I saw his – red-rimmed and on the verge as well – I would not be able to contain what was building up behind my own.

So I stared forward at the doctor.  I again scanned the words on what were now heavily marked-up pages in front of me, even though I knew these words had already been burned into my memory.

Owen K: Actual Age, 3 years, 9 months.

Age equivalent of 2 years, 10 months.

9th percentile.

Developmental Test, 5th percentile, Range: Low

Expressive Vocabulary Test, Age Equivalent of 2 Years, 6 months.

Adaptive Level (High, Moderately High, Adequate, Moderately Low, Low)

Owen’s Scores: low, low, moderately low

Low, low, moderately low, low

Low, low, low, low

Low, low, low

Overall score: Low.

I felt like I had one of those Magic 8 balls in my hands and it kept coming up as “Outlook Not So Good”.  And somehow, the fact that he remained playing happily behind us while the doctor asked us a series of questions, and made this diagnosis, and discussed the wide gap between where he should be and where he was; well, it broke my heart just a little bit more.

It had only been just over ten months since his last major diagnosis.  Since the last bomb had been dropped.  Since our hearts had been broken.  Since new fights had to be fought, plans rearranged, therapies reevaluated, medical journals poured over in some masochistic late-night exercise…

When can we let our guard down?  When can we be allowed to feel the weight of what is, without also needing to feel the tug, the pull, of what might still be?

This is not his most devastating diagnosis.  It is not similar to the stroke or the brain malformation that deeply frighten us with their rarity and lack of definitive prognosis – and that’s sad, isn’t it?  It says so much about the road our life has taken us on.  And this is scary, and has looming questions of its own, and the unknowable stretching out before it, too.  But we are playing triage now.  Figuring out what to do first, and who to call, and what meetings to set up, and where we go from here…  We are in that mode again.  And I can do that.

Somehow, one day, all of this changed something in me and I became something new.

I went from feeling powerless over our future to feeling powerful within our present.

I can do this.  I know this mode.  I know about calling, and advocating, and fighting, and finessing, and when to ask politely, and when to push harder, and when to feel guilty that you called someone an asshole before hanging up on them (and when they just deserved it), and when to ask for a supervisor, and how to schedule, and just how much I can accomplish while listening to hold music from the insurance company on speaker.

So here are my facts about my son.

Diagnoses: Stroke in utero, Cerebral Palsy, right-sided hemiparesis, missing Arcuate Fasciculi bilaterally, brain malformation, Autistic, fucking adorable.

Weaknesses: Cognitive impairment, cannot climb stairs unattended, poor trunk strength, word retrieval, very poor retention of learned materials, impulse control and self-regulation, chocolate.

Strengths: Unusually high pain tolerance, very strong, loves helping, incredibly hard-working – will go through hours of intense therapy without complaint, affectionate, charming, contagious giggle, can fart on command.

Q&A: 

What are the chances that this new diagnosis will slow him down in any way? Low.

What are the chances that you will quit fighting for him to get the services he needs? Low.

What are the chances that this will break you? Your family? Your marriage?  Parker’s childhood? 

Low. Low. Low. Low.

Screw you, Autism.  

 

Finding My Religion – In My Car.

All too well

Last night, I went to a farewell party for my Aunt Linda before she moves to Kentucky. A woman I admire and love and am finding that I will miss so much more now that she won’t be just an hour away… It was me and Wendy and a bunch of incredibly warm and feisty women over the age of 65.  They all knew Wendy, obviously, but so many of them thought I WAS her initially, or were confused and immediately asked what the relation was since they saw such a strong family resemblance.

And then people asked questions like, Who’s your mother?  What’s the relation? And for the first time, I genuinely resisted telling people who she was – what her name was.  There was a pause – avoidance.  I would answer first Wendy and I are first cousins. If they pressed on, I might mention that her father and my mother were siblings. Who’s your mother? They’d ask again.

Eileen.

I realize that I’m getting further and further away from her.  Which is better, and what I want, but nonetheless harder, too.  I don’t want people to think of us as being related.  I am embarrassed by her, I loathe her, I don’t want to be associated with her – as much for myself as for what others likely think of her.  I think I’m finally falling away from feeling compelled to tell my story and moved on to finally wanting to tell it – but on paper, here – not there.

And I am driving home  and I am thinking about all of this – processing it while I am alone, in my car.  With a solid grip on the wheel and possibly on reality, too.

But then Taylor Swift sings, I’m a crumpled up piece of paper lying here, ‘cause I remember it all – all too well.  And I do – I remember it all, and all to well.    Who knew all of this?  Who told them? Sara Barielles’ “Gravity” talks of being pulled under, of how:

You hold me without touch.  You keep me without chains.  

I never wanted anything so much, than to drown in your love and not feel your rain. 

Set me free, leave me be, I don’t want to fall another moment into your gravity, 

Here I am, and I stand so tall – just the way I’m supposed to be. But you’re onto me and all over me…

And there’s Beyonce, and the Dixie Chicks, and Savannah Outen singing that,

Love is not a victory march, it’s a cold and it’s a broken Hallelujah.

And there are more – so many more. Ani DiFranco, Led Zeppelin, Jay Z, The Pretenders, Jeff Buckley, Adele.  Thye are preaching to me from their pulpits, from their microphones.

When I finally had the money and got my own car as a teenager, I made a mix tape for the exact moment when I got in and drove away – when I felt free.  And the first song on it was “Little Bird” by Annie Lennox.  As I drove away from them, from my life, I heard:

They always said that you knew best 
But this little bird’s fallen out of that nest now 
I’ve got a feeling that it might have been blessed 
So I’ve just got to put these wings to test

I have finished Devotion.  I have learned that Dani Shapiro found her religion in many places – I think I have found mine here, in my car, alone.  And I am angry, and I am scream-singing at the top of my lungs to songs that are anthems now, songs that have become my prayers.  These songs that seemingly know what has happened and blare words of truth through the speakers of my car as I drive home alone. I have found my congregation in a chorus of voices, in songs being simultaneously sung to me, about me, and by me.

I am so many pieces of these songs.  They are moments in my life.  They somehow fill these aching holes – the holes that I am learning will never truly be filled – well, they temporarily plug them with their verses, and choruses.  Their bridges bridge the gap between broken and whole.  For a few moments, I can feel free.

And under my breath and at the top of my lungs I am thinking, I am saying, I am singing, I am screaming… Hallelujah.