Category Archives: love and sap

Slow

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Slow is beautiful.

In the morning Evie gets up slowly.  She gradually tests her voice with a series of little contented moans that build in intensity.  Build into happy shrieks.

I listen on the monitor and go to her when I hear those little shrieks.  I open the door and say, “Good morning Evie.”  She is always sitting up on her bed with her legs extended straight out in front of her.  She squints as the light from the hallways creeps into her room and her pupils slowly adjust.

When I sit on her bed she smiles and hugs me.  I lift her body up.  Because of her low tone, she melts into my body.  Hypotonia has its perks.  For a blissful moment, I don’t know where I end and she begins.  It is one of my favorite moments of the day.

I carry her downstairs and our morning ritual ambles along.

She eats her breakfast slowly.  In courses.

Her face and hands are sticky from pears as she climbs in and out of my lap.

She gets up early.  Some would cringe at the hour that she rises.  But I have come to love our morning routine.  We don’t have to hurry because the hours until I drive her to school stretch out before us with comfortable sameness.  The predictability of knowing what comes next.  But being in no hurry to transition.

From Evie, I have learned to slow down.  To savor the moment.  The many ways in which Evie is different from typically developing children is especially apparent in the morning.

She offers me her, still open-mouthed, kisses in abundance.  Uncharacteristic of her age.  But wonderfully characteristic of my girl.

In the morning we are fluent in the same language.  For a few short hours, I can live entirely in her world.  Speaking little.  Communicating in hugs, kisses, and cuddles.  Almost every morning, I have a fleeting thought of keeping Evie out of school to feast on our synchronicity.  But while Evie doesn’t speed up much as the day progresses, I must return to my world of fast moving.

So I don’t indulge that tug I feel to linger there with Evie.  Where nothing is as important as a morning snuggle or a juicy pear.  Where deadlines and appointments don’t exist.  Where fast and competitive cease to be.  Where just being is splendid.  And where you never have to steal a kiss because open-mouthed smooches are dealt out freely and without restraint–even when you’re five going on six.

 

It is birthday babble

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“To Gillian on her 37th Birthday”  ‘memba that movie?  It keeps popping into my head because I turn 37 today.  It came out about 15 years ago, I think.  I remember thinking how positively ancient 37 sounded.  And here I am.  37.  Married, stay at home mom to two kids, a mortgage, a dog, a cat.

My early twenties self would scoff at my 37 year old self.  I had no intention of ever getting married–buying into that silly piece of paper that shackled two people together.  Bringing children into a world full of suffering, poverty, war, and unhappiness?  Selfish and irresponsible.

It is funny that I was in the twilight of selfishness at that point in my life.  I thought of little more than designer clothing, partying, and falling in and out of love with all the wrong men.  I know that I didn’t have a concept of how to really care about another human being in a meaningful way.

I used to want life to speed up, to get on to the next moment that held all the promise of being better than the last.  Now, I would give anything for life to slow down–to be able to savor these delicious moments spent loving my family.  How could any moment be sweeter the one spent cuddling my girls, watching Evie’s face light up, or seeing Maxine learn something new?  I find myself fighting my tendency to mourn the passing of time and the death of each precious moment.

My twenty something self wasn’t wrong in a lot of ways.  The world continues to be the home of so much sadness.  And yeah, it probably is selfish in some ways to bring kids into the world.  But with the passing of the years, I’ve been able to see beauty and hope in even the darkest moments.  I’ve learned to go looking for light and promise.  And I’ve learned that alongside the horror and darkness, it is always there, waiting to be discovered and worn as a protective shield around my heart.

I’m not so evolved that I don’t get angry or judgmental.  But my hard edges have softened and have given way to a more malleable me.  I’ve chilled.  A lot.  I’m sure that I owe a shout out to my good friend Paxil.  But I’ve also put in the hard work to become a person that I’m proud of on most days.

It is really hard to be good.  To swallow my pride often.  To forgive–usually myself.  To go easy on other people.  And to look for that thread of goodness that is always woven into the tapestry of life.

Good god, I’ve become a cheesy sentimentalist.  But in becoming so, I’ve opened the door to real honest to goodness love and unimaginable happiness.  I’m a work in progress capable of smiling with context.  And as I nurture my spirit, I try not to think about whether or not I will have another 37 years to marvel at the evolution of myself.  And I try to let each moment be fulfilling and enough.

Maddie, Emily, and Evvoon

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I’ve been wanting to blog something so meaningful to me for a while.  Evie doesn’t bring home pictures she has drawn from school.  She doesn’t tell me about her day.  But about a month ago, this card from Maddie came home in Evie’s folder.  Call me sentimental but I will cherish this until the day I die.

This tells me everything about what Evie is doing at school. She is connecting with people. She is making friends.  She is learning the very best thing there is to learn.

I’ve underestimated my child and I’ve underestimated her peers.  I’ve never been so beautifully and wonderfully wrong in all of my life.

You see, we love Evie so very much.  But I was too afraid to hope that her young classmates would be able to see past her disabilities.  I couldn’t imagine them putting in an effort to try to connect with Evie when Evie connects in a way that is so foreign to most.

Evie can’t keep up physically.  She doesn’t speak.  She rarely makes eye contact.  She’s been known to steal food from peers.  And she occasionally bites.  That’s a lot to swallow for a five year old.  But these kids reach out to my daughter.  They reach across all of the differences and the obstacles and they find a way to be a friend to my daughter.

And it is not just Maddie.  I’ve been dropping Evie off at school for a little while now.  Almost everyday, a young girl named Emily meets Evie.  Her eyes honest to goodness light up when she sees Evelyn.  My eyes honest to goodness fill up with tears and I get that gulpy-holding back the cry feeling in my throat.  Yes, every day I get a little heart lift from seeing this exchange.  And every day I fight the urge to hug Emily and cover her face in my tears and kisses.  This would be frowned upon by admin and Emily alike, I would venture to guess.

I’m learning to expect the very best there is from children.  Evie’s friendships give me hope for her future, they give me hope for our family, and in a really sappy maybe-overreaching-but-I-don’t-think-so way, they give me hope for humanity.  Her friendships remind me to look for the best in people and to try to find common ground–even if they bite.  We can still love people that do things that we don’t like–stealing snacks or otherwise.   Okay, don’t worry.  Quashing my urge to go all peace monger on you and will just say that we all could learn a lot from kindergarten kids.

spring

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I love winter.  Up until the last month or so.  Then my heart, mind, and body prepare for the very best season of all.  Spring.  I am a bona-fide spring junkie.  Today was the first time this year that I got the springy dingy feeling.

I’m going to get carried away in this post.  Consider yourself warned.

Today was an unexpected delight.  After last night’s terrific thunder storms, I figured it might be kind of warm. But when I stepped outside this morning–oh my gosh.  Bliss.  And there is no better bliss than the kind that catches you off guard.

I loved seeing those super white, chubby, little legs dangling out of the first shorts of the season.  Those little that have been hiding under layers of fleece for months came out to be kissed by the sun (and mama) today.  Exposed arms and faces soaking up the natural vitamin d those bodies have been craving.

A first real exploration of the outdoors for Maxine.  Crawling around.  Do I like the feeling of grass on my knees?  Do I hate it?   Oh, right-right, I’m mama’s daughter.  I love it.  I think.  Maybe.

Evie pushing the limits of her comfort zone.  And.  Wandering into the back yard by herself.  Crouching down to squish leaves and mud.

Rebecca arching her head back to feel that honest to goodness spring breeze on her beautiful face.

Me with a permagrin watching my girls fall in love with spring.  Me falling in love with my girls falling in love.

Long walks in the stroller with Wally trotting along beside.  And sometimes in front of the stroller.  That’s a mistake Wally.

Open windows.  Ceiling fans circulating the beautiful spring air into the house and the stale winter air out.  At least that is what I picture happening.

Dirty feet.  There is nothing better than dirty feet.  There is a direct correlation between how dirty you are and how much fun you had.

Little reddish buds on all the trees waiting to burst open into that young green in just a few short weeks.

A little chipmunk darted in front of us while we were lounging on the lawn.  Like 1 foot in front of us.  Okay, well that part kind of sucked because I don’t like rodents.

But mostly today promised me so many things.  Of the long daylight hours.  Of the summer nights with trips to creamy stand–Maxine can have her first soft serve this year.  Today promised me that our world would soon be exploding with green.  That the daffodils that opened today are just the first of many flowers to come.  It promised scraped knees and bee stings and all of the rights of the rights of childhood passage.  It promised us long hours at the park.  And swimming.  Lots of swimming (I considered pulling the kiddie pool out of the cellar but vetoed myself since I was the only adult here).

We were promised the endless summer–like the ones that turned me into the insane springy ding dong loving gal that I am today.

Enjoy the spring!

waving

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Today was the second day that Evelyn returned my wave from the school bus window.  I’ve been waving for nearly two school years.

Love explosions.

Isn’t it amazing how one little palm held up to the glass can make my heart soar.  How it can leave me standing in the driveway waving frantically and saying, “yes, wave.  you’re waving.  you’re awesome.  you’re waving to mama” etc.  Even though she couldn’t hear me.  I went on and on.

She left her hand against the window and a little smile touched her lips.  I think she knew that her mama was making a spectacle of herself and was amused.

After her bus was out of site and I was walking down the driveway, I realized that I had a huge grin on my face.  I love when that happens.  Not even realizing that I am smiling.  I don’t think that I used to do that before I had my girls.  Now it happens all of the time and I love it. How extraordinarily lucky am I to be so happy that I get to walk around smiling without even realizing it?

Have I mentioned lately how much I love my girls?  I am grateful for the beautiful simplicity that they have brought to my life.  I am grateful that they have boiled happiness down to a little palm pressed against the window of a bus.

autism in our family weekly

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I don’t always know what Evelyn is thinking.  As I sit here listening to Evelyn laugh uncontrollably at a skit on Sesame Street, my heart does those little flipper floppers that I call love explosions.  I don’t know why this particular skit is so amusing to her.  And she can’t tell me with words.  And while it is enough–will always be enough–to know that Evelyn is happy at this moment, we certainly work towards finding different ways to connect with Evelyn.

If you have a typically developping child, you might notice that when she laughs, she wants to share that laughter with you or others.  She makes eye contact, she points, she tries to draw you into whatever is inducing those delicious giggles.  Evelyn very seldom does this.  When she is laughing at something, she is her own world and she doesn’t want (or not want) to share that moment with others in most cases.  Recently, I learned what I’ve noticed for the past couple of years has a term.  Joint attention.

While I work on joint attention with Evie, I have to remember to respect that we are both wonderfully unique people.  I don’t try to drag her into my neuro typical plane of thought.  I try to go to hers.  Sometimes I sit back and observe and make mental notes as to what might be amusing Evelyn–movement, color, sound, texture?  Usually, it is a mystery.  But sometimes we will notice a trend.  For instance, Evelyn seems to get her giggle on when watching rapid movement particularly on TV.  And those breakthroughs are wonderful because it gives me a point from which to start.  I can show her other things that she might think are funny.  And those moments that she looks me in the eye and laughs are indescribable because she knows that I am, for a second, laughing with her in her world.

More often, I don’t figure it out and I don’t get it.  And while your first instinct might be to think about how frustrating that might be for me, I ask you to think about Evelyn and thousands of people like her.  Thousands of people that we ask, everyday, to live in a world that they don’t understand.  We ask them to live in the ways that we live.  We ask them to interact in the ways that we interact.  We ask them to play by our rules everyday with very little thought as to what that might feel like.  I say we “ask” them but what I really should say is that we expect them.

Think of the thing that makes you crazy, nauseous, wanting to crawl out of your skin.  For me, that is nails on a chalkboard or scratching anything in general.  I go beserk.  My mother is forever scratching at things and she doesn’t understand when I go bolistic.  I have to imagine that this is how Evie lives almost every single minute of the day.

The next time you see a kid in the grocery store–with autism or not—that is screaming or throwing a fit.  I hope your first instinct will not be to judge the child as poorly behaved or judge the parent as subpar.  I ask you to consider that the lights in the grocery store are super bright.  That there are so many people, things, sounds, and smells that are stimulating–over stimulating.  That child might be experiencing a nails on the chalkboard moment.  If that child has autism, many moments of the day may be nails on the chalkboard moments.

As a mother, I am compelled to try to blend the sharp edges of my world and Evelyn’s world so that we can both function, live, love and laugh.  So that we can delight in the moments where we are able to bridge the gap between our worlds.  So that our eyes can meet and for a second we have clarity and understanding.  As a mother of a child with autism, I appeal to you as a human being.  It would be great if you could dip your toes in the waters of her world–to see the humor in the world as she sees it, to see the obstacles in the world that she faces.  I understand if you can’t find your way to her world.  But could you, pretty please, remember that she is living in a nails on the chalkboard world and that she may not be able to cope with that every second of everyday…and if you can muster it–Respect.  Respect that she brave and graceful in her ability to live outside of her comfort zone almost every single moment of her life.

destination: happiness

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Thank you so much for the kind messages and comments about my first blog post…well the first one that I shared.  It is so uplifting to know that people actually took the time to read it–took the time to give thought to my words.

I’ve always been a pretty passionate person.  But my passion–the kind where you throw yourself into actually DOING something has always been pretty fleeting.  I would impulsively jump wholeheartedly into whatever.  Then I would see something shiny and get distracted.  I was usually motivated by anger–at the government, at an unethical company, or whatever.  But anger isn’t enough to fuel me in a sustainable way.  When it comes to advocating for my children, I am not fueled by anger.  I am fueled by love.  I am fueled by the burning need for my daughters to live in a beautiful world.

I still get pissed off when someone or something messes with that beauty.  But I am usually able to channel that anger in a more positive way.  Because I realize that my anger also pollutes the beauty.  Anger clouds my vision.  I see so much clearly now.  I know that every moment spent being angry is a moment not spent with my children or for my children.

My girls have given me so many gifts.  And I know it sounds cliche…but I’ve learned so much more than just parenting.  I’ve become a better human being.  Through them, I have been connected with  really lovely new  people.  My admiration for these people has lead to me examining the kind of person I am, and the kind of person I strive to be.  I’ve also been able to connect, in a different and more positive way, to people that I’ve known throughout my life.  These connections are all beautiful and they make my own world such a lovely place to live.

I think that prior to having children, I was really hard on people.  I was judgmental and arrogant.  Don’t get me wrong, I still fight to suppress the judging monster that rears its ugly head more often than I’d like.  But for the most part, I am much more willing to give people a break or the benefit of the doubt.  I find myself looking for the good in people and being more understanding of faults.  I think this has to do with the fact that I feel like my own (copious) faults and mistakes are magnified by the giant looking glass of parenthood.  There is more than enough for me to judge in my own backyard and people cut me a break.  They tell me I am good when I feel bad.  They tell me that my insecurities, my flaws as a parent, my flaws as a human are okay.  They forgive me and they accept me.  That is beautiful.  And I want my daughters to learn from and be a part of THAT humanity.

I’m happier than I have ever been in my entire life.  I live in a wonderful world filled with really kind people.  I’m still getting used to feeling this way.  It feels extraordinary to write words that I would have rolled my eyes at not so very long ago.  Isn’t it strange that I am somewhat uncomfortable with real, true, deep down in the pit of my soul happiness?  I don’t remember exactly how I got to this beautiful place but I know I wouldn’t be here without my children.  I know that love propelled me here.  I know that I wish I had a map to send to those that can’t find this place-for the better part of my life I didn’t even know that this place existed.  I know that I want my children to live here with me always and it is my responsibility to teach them how to live here.

I know

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Evelyn is four.  You no longer tell me that she is a late bloomer or that she will catch up.  You know that I don’t believe that you believe that.  Evelyn has special needs.  You know that.  Her special needs make you uncomfortable even though you do your best to pretend that they don’t.  It pains you to know that I know that you are feeling uncomfortable.  Your words are bright and tend to avoid the topic of Evelyn.  But your eyes tell me that you feel sorry for Evelyn.  You feel sorry for me.  What you don’t say, says so much.

I am not criticizing you.  I know the awkwardness that you feel is born out of compassion.  It is born out of your desire to be polite.  You’re silent because you don’t want to say the wrong thing and you don’t know what the wrong thing is.  You have questions that die on your lips because you don’t want to hurt my feelings.

You picture my life, Evelyn’s life, the life of our entire family one way.  But really it is another way entirely.

You see Evelyn as her disability–she IS autistic, she IS non verbal, she IS developmentally delayed, etc.  I see Evelyn as my child that HAS autism, developmental disabilites, etc.  What is so hard for you and so easy for me to see is Evelyn.

You don’t see that Evelyn has a great sense of humor, that she cuddles in and gives the best hugs.  You don’t know that Evelyn has a personality that is so much bigger than her disability because it is so hard to see around a person’s disability unless you’re really looking.  You’re focusing on all the ways that Evelyn is different than your child–different than you.  You see all the things that she is not doing.  And sometimes I see those things too.  And sometimes, yes, there is a voice in my head that wonders what could have been.  But I tell that voice to zip it because oh my goodness…look who Evelyn IS!  Look at the wonderful things Evelyn is doing!  And this might be hard for you to believe.  But it is true.  I don’t want that hypothetical Evelyn.  I want THIS Evelyn.  The one I love everyday.  I want this Evelyn–exactly the way she is.  Disabilities and all.  I want this Evelyn–the one that loves to sit in my lap and cracks up laughing for no reason.  If you weren’t afraid to get to know Evelyn, you would see how very wonderful the real Evelyn is to know.

And while you are getting to know Evelyn, it would dawn on you that our life isn’t anything like what you thought it is.   Sure, we spend more time in doctors’ offices, at therapy, etc. than the average family.  And yes, we have challenges unique to our family.  But at the end of the day, we are just another family doing the best we can to love each other the best we can.  Our life does not center around Evelyn’s disability.  We don’t mourn Evelyn’s disability.  We don’t ignore it or pretend that Evelyn is just like everyone else.  Evelyn and her disabilities are a wonderful part of our family–and I stress “part” because there is much more to us than Evelyn and her disabilities.

The only thing you can do to hurt our feelings is assume that we wish Evelyn was different–to assume that Evelyn isn’t everything we ever wanted in a daughter.  Sure she isn’t what we expected but sooner or later all parents realize that children almost never are. and we love our children for the very unexpected people they turn out to be.  So ask us anything.    And please don’t feel mortified when your children ask those blunt and honest questions that only children ask, like,”why doesn’t she talk?”  Kids have to understand Evelyn in order to try to include her–just like adults need to understand our family in order to include us.   Although we understand it, there is nothing worse than being pitied and/or avoided.

We know that we aren’t going to be around forever and we are desperately trying to carve out a space for Evelyn in a world that aknowledges and appreciates her as an individual that happens to have disabilities not just a disabled person.

baby love

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maxine.  i’ve been feeling guilty for not having the words to blog how your arrival touched my life.  i realize that i don’t have them yet because it takes a long time to process something so profoundly wonderful.  they will come, but it will take time for me to wrap my brain around my heart was instantly swollen with love for you.

you are 7 months old.  your smile.  it disarms me.  i forget myself even after all these months.

you want to be close to mama always.  i know it won’t always be this way and i will miss you when you start to explore your world without me.  but right now i can hold you close.

you love to nurse.  and i love to look down at you in hopes that you will take a moment to pop off and flash me a milky smile as you do sometimes.

everything feels so right when i bury my lips in your delicious cheeks.

you’re a silly baby.  so happy.  i want to keep you this way, as you are right now, always.  but i don’t want to miss out on any of your tomorrows either.

know that i love you with my entire soul.  when i look at you my heart giggles and i feel love surge through my veins as if a damn burst.  and keeps on bursting.  those are my love explosions for you, my little bubble.

the beginning and before that

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i was born on June 29, 2006.  i was alive before that but i don’t really remember myself.  so this life, the one i’m living right now, started when my daughter evelyn was placed in my arms.  it started when she latched onto my breast and began to suck–as if to suck my old life out and replenish it with something new.  something much, much better.

what happened before my birth is peripherally important, i suppose.  some might object to me defining myself only as a mama.   but that’s the truth.  my beautiful truth.  every moment of my past life was a moment spent waiting for my children.  i mistook my reckless restlessness for something else.  i didn’t know i was waiting for my life to begin.

when i was born i felt the instant sting of naked vulnerability as i held my tiny reason for living tight.  this could all be taken from me and i would have nothing.  i would be nothing.  i was, i am only a mama.  almost as terrifying, i could be taken and who would protect my little creature?

she could, she would destroy me.  it sounds awful.  but slowly the sharp angles of my raw emotion began to soften as i allowed myself to feel the joyful love that was propelling my fear.  the love.  it plunged deep and penetrated my soul.  it ran parallel…and perpendicular to the terror.  and i knew that these emotions would  live in conflicted harmony for the rest of my life.

as i hungrily drank in every inch of my child, i began to experience the love explosions.  love explosions.  the fluttery, shivery, tingly feeling that i get when there is so much love that it clogs the veins of my essence.  and then, all at once, it gushes forward and overwhelms me and shakes me to my core.  love explosions.