Reals & Ideals

It is 8:00 pm and, by some miracle, all three of my boys are sleeping.  Funny thing is, about a half hour ago I lost it with the two big boys... thinking it was already 8:30 I hustled them through pajamas, brush teeth, story, lights out... impatient & barking at them through each step.  When I came back to the kitchen I realized my mistake... it was only 7:30.  Perhaps I should find my glasses & actually wear them?

There are some mornings I wake up to little boy snuggles and excitement about the day ahead and I think to myself, I am doing pretty well with this parenthood thing.  Other mornings I am equally convinced that I am messing the whole thing up as I referee squabbles over ridiculous things, losing my cool well before breakfast.  I'm pretty sure that somewhere in the middle lies the truth.  Royally screwing up some bits & mostly handling the rest of it pretty well.  I cling tightly to the idea that all will work out in the sum total, as long as I keep trying to do better.

Right now my kids are all at a place where they need so much more than they can give.  On the worst days I carry their needs heavily... slogging through the have-to's and routines.  On the best, I can find all of the little ways that they do give back to me... the love, trust, small moments of joy that lighten the rest.  I try hard to remember that these light moments are there all the time... even if not visible to the naked eye.  If I could just find a pair of those glasses... the ones that remind you to see the beauty in the midst of chaos... I am certain I would never take them off.

Sunflakes & Random Bits

This morning before school Quinn drew a picture for a classmate named Emma.  He often receives drawings from girls in his class, his beaming smile as he reveals these treasures to me at pickup says it all.  He has peeps.  They bring in drawings & art for each other, shyly handing them over before school starts and then excitedly going on about their morning business.  He only recently started reciprocating though.  First a rainbow and sunshine for Alexcia.  Then this morning for Emma a flower, rainbow & a sunshine.  After drawing the sun he continued to make yellow dots throughout the picture.  I asked him if those were the sun's rays... he informed me that those were "sunflakes".  But of course, sunflakes.

His school participated in a Read-Across-America day.  I brought my lunch & a blanket and we ate and read along with his entire school on a bright sunny afternoon.

 

 

We finished up basketball season by actually playing in the last half of the last game.  

Got the medal & everything.

 

Celebratory ice-cream

Next up for Quinn is baseball... he sure looks cute in the uniform... will soon see if actual baseball will happen.  First game coming up on Saturday.

 

Remy's new favorite thing to do is to take my phone when I'm not looking, take a ton of random photos and then sneak it back where he found it.  I often don't notice until much later, when I come across photos like this... 

  

Or this...

 

 

 Until... caught in the act...

Busted!

Warmer days have meant a return to playing out on our front porch.  Not having a yard is tough with little guys, but we sure have fun with the space we do have.

Must be spring... brand new box of sidewalk chalk!

Remy's masterpiece

He has "the COOLEST bike helmet EVER in the history of EVERS."

William continues to work nights at the Gulag... only a few more weeks left.  We try to get him out in daylight whenever possible before he turns vampire... or worse, zombie.

How did I get so many BOYS?!?

Yesterday Soren took six steps on his own... pulled up on the kitchen cabinet & started walking to the door.  He still prefers crawling as his main mode of transpo, but it is only a matter of time before he's running after big brothers on his own two feet.

Free-ranging with the chickens at Grandma's house.

Last week I escaped for an entire day of pampering at the Spa.  Yes, I got to be a lady who SPAS.  I started the morning with an hour & a half long massage and a soak in a hot mineral spring.  Then a gorgeous lunch of exactly what I wanted (steak salad!) as I sat in the sun and read a book (a real actual book.) 

Steak salad with marinated mushrooms, arugula, parmesan spoonbread & a light horseradish dressing.  Oh-my-goodness it was delicious.

The afternoon brought a pedicure and nourishing facial.  I enjoyed a hot cup of tea and fresh cinnamon donut holes before driving back to Grandma's house for the night. 

happy feet

Hot cinnamon crack balls with a Bailey's Irish dipping sauce.  Pure heaven.

It felt decadent and delicious to have such a day.  Now it all seems a distant dream... floating weightless, the only sound my own heartbeat.  I had almost forgotten what quiet sounds like.

What quiet looked like...

When I got home the next day the boys surprised me with a project they had made.  With Daddy's help (and powertools!) they designed, built & painted a birdhouse for our front porch.  Adorable little buggars, aren't they?

Here birdy birdy... come on & move in.

 A sneak peak at Quinn as a teenager... such a pose & attitude...

And that's a bit of random... a few sunflakes too.

Word

I have written before about how the words we choose carry weight & meaning, sometimes far afield from what we might intend.... but I find myself hesitant to get on a soapbox about it very often.

Today, however, I am climbing up... for a couple of reasons.

First, because the word "retarded" sucks.  If you are trying for an insult, the English language has so many alternatives... asshat & nincompoop being my personal favorites. 

Second, because today is the annual day of awareness for the Spread the Word to End the Word campaign.

What is Spread the Word you ask?

Spread the Word to End the Word is an on-going effort to raise the consciousness of society about the dehumanizing and hurtful effects of the word "retard(ed)" and encourage people to pledge to stop using the R-word. The campaign is intended to get schools, communities and organizations to rally and pledge their support to help create communities of inclusion and acceptance for all people.

Yep, good stuff.

As a parent to a child with special needs it never gets easier hearing that word tossed around our society without thought.  Just last night husband & I were out on a date at a comedy show.  The comics were all intelligent, talented and very funny.  And yet, in the middle of the main comic's act, at the moment where he had the entire audience bent over with laughter,  he chose the word retarded in the context of "stupid".  Our smiles frozen, husband & I exchanged the look.  The one that says, yes I heard it too... ouch.  It feels exactly like getting the wind knocked out of you.  Every-Single-Time.

Please check out the Spread the Word website:

And take the pledge.
The one that says "respect" is the R-word that really matters.

DS moments

This morning at basketball Quinn refused to participate after the initial warm up drills, sitting out his turn during the scrimmage game.  First just sitting out, then crumpling into himself, then outright crying.  His aide tried to coax him up.  His coaches tried.  Even a young teammate made a sweet attempt.  But nothing would convince him to move.  I took him from the sidelines, tried a couple of bribes, a trip to the bathroom & a few more bribes (ice-cream!  The Lorax!  the park!) but nothing could convince him to take his place on his team and participate.  Feeling open, exposed, and raw because I am in this on my own today.  William is working nights and is (hopefully) fast asleep right now.  A bit frazzled as well since the babysitter, who was supposed to watch the two younger boys so I could focus on Quinn, was a no-show.

Recognizing defeat, I surrendered and gathered the two little ones and pouting big one to make our exit.  I felt the looks of pity? kindness? curiosity? from the other parents as we made our way to leave.  These are the moments that are the hardest for me.  When the spotlight shines bright on Quinn & our family, revealing every nuance of difference.  All kids have their tantrums, their meltdowns, but in this moment it feels like this bright light shows the place where that extra chromosome dwells.  How our family has to deal with things that others do not.  In our experience so far, people are very kind in these situations.  The irony is that their kindness makes it feel harder in some ways.  That sounds messed up, I know, but what I mean is that it forces me to recognize that the issue is mine.  In some twisted way it is easier to deal with a slight or cruelty because I can rally the forces to face it together.  My reaction to kindness or pity is my own issue to sort out.  I find it strange that my biggest fear about Down syndrome at this moment is being on the receiving end of pity.  The extra behavior issues, increased risk for dementia, need for supervision to continue in ways that typical kids do not… these things, and potential things, feel manageable somehow.  Acceptable worries.  The logical part of me knows that worrying about what other people think should not be anywhere on that list.  This emotional place, however, doesn’t follow logic much.

When Quinn was younger I never minded the extra therapy or doctors appointments, instead finding comfort at having a team of people to turn to as he grew. But standing out in this way is something I still struggle with.  Feeling “different” brings me right back to that feeling of dread in middle school that everyone was in on some joke that I didn’t understand.  Or in new motherhood when it looked like it was all so easy for everyone else, but I struggled with adjusting to my new identity.  (Something I know that is not true, everyone has struggles, but felt profusely in the earliest days with Quinn.) 

The day goes on & I start to wonder why it is so important to me that he play on a team at all.  These moments in parenting always take me by surprise.  The ones where you have to take a breath, focus on the issue, and try to separate what is yours & what is theirs.  Is it important to Quinn to play on a team?  Probably not.  But as his parent isn’t it my job to push him out of his comfort zone a little, to provide the chance to learn something new?  The world won’t always slow down for him, so I feel that I need to give him every opportunity to find his own way around within the fast pace of regular old life.  Having him fully included at school is a big part of this.  Playing basketball with kids close to his own age seems like a good place to push him forward a little more.  Perhaps I just have to be a little more prepared for the one step back that comes along with his two steps forward when trying new things. 

I wish I didn’t care what other people thought, and with most things I really don’t, but when it comes to Down syndrome and people feeling sorry for us, I tend to come unglued.  I don’t want to be pitied or thought of as “that poor family”.  I want the world to see what I see.  A family that laughs and struggles and has killer taco parties.  A young man with almond eyes who loves his monster trucks, can read at near grade level and would eat macaroni and cheese every single meal for the rest of his days if I let him.  The one who loves basketball but can’t seem to get it together when it comes time to actually play on a team. 

One step back, two steps forward, one step back.  We’ll get there eventually.  We always do.

Remy being five

Dear future teenager Remy,
On the night you were born the stars shone bright in the cold, crisp sky.  My contractions had started two days before, growing stronger and closer together, leading us on an adventure of false-alarm visits to the hospital and lots of walking to try to move you along.  I have come to discover that nothing can actually make you move any faster than you desire.  Your speed and direction are often difficult to corral.  You know your own mind kid.

Once I was actually admitted to the hospital, and the doctor broke my water, you let us know you were ready and made your appearance a short five hours later.  You slid into the world so easily compared to your big brother.  Thank you for that experience.  Your birth was the closest to the one I had imagined, most resembling my mental picture of how becoming a mother would be.

I remember that first night, settling in to get to know you.  The angel's kiss on your collar bone seemed so large & I worried about it following you through life.  Now your body is so big & it is just a faint whisper of a mark, reminding me of that sweet moment when we first met.  On your birthday morning this year we marked your height on the wall in the kitchen.  You grew 1-1/4 inches in just three months.  How is that possible?  It seems that each day you bring something new to the table, some new discovery that delights & amazes.  You are making your way in the world at top speed.  Slowed only occasionally by the asthma that strikes whenever you get a cold.

Most mornings you like to stumble out, sleepy-eyed and bed-headed, in search of a hug and a cuddle.  I love hearing your sweet "Good morning Mama" to start my day.  Eager to share the contents of your latest dream your words spill out before any of us can catch up.  I listen intently to your adventures with dinosaurs, Darth Vader and Power Rangers.  I hope you will always share your dreams with me.

Baby Remy... your little brother looks so much like you sometimes!

Your favorite food right now is chicken nuggets.  I try to make healthy ones at home, but you prefer the grocery store version, laden with unknown chemicals & mystery chicken parts.  You also love peanut butter with jelly & honey on wheat bread with the crusts cut off.  You like to eat your apples cut in half, "just like Daddy does."

After school you greet us with an enthusiasm usually reserved for Santa or a parade.  The words can not tumble out of you fast enough as you share details of our time apart.  Please don't forget this.  We always want to know what fills your days, your thoughts, your heart.

Sometimes you are shy.  It always takes me by surprise since it is contrary to who you are the rest of the time.  You will talk to anyone, anywhere, anytime.  I am both thrilled and terrified by that fact.

You are a good brother.  Sure you fight over space, time & toys, but you also make each other laugh like no one else.  You look out for both of your brothers, making sure Quinn doesn't run away or that the baby has his preferred toy.  I love hearing the sweet falsetto voice you use with the baby.  You are a good helper, even though you won't go near a diaper for any bribe on earth.

You are a good friend.  I always hear from your teachers and other parents how caring you are with your friends.  How you cheer them on, or are the first to offer a hug and encouraging word to someone who is upset.  I love seeing you through these eyes... a glimpse at how compassion and empathy carry you through your life apart from me.

I often stand back in wonder at how your mind works.  You remember details from months past and bring them back up in perfect context.  Your stream of constant questions crack me up.  "What does Darth Vader eat?", "Do fairies whistle?", "How do germs see where they are going?"  I usually don't have the answers, but love being by your side on the quest to find things out.

Today you are five years old.  You have waited "soooooo long" to be such a grown up age.

We both thought you simply might burst from excitement before reaching this special day, but here we are.

And here I am, so very proud to be your mom.
Happy Birthday my sweet boy!
Love,
Mama

mama's missing mojo

Last summer, driving home from Grandma's one weekend, the boys & I stopped along the way to fill the car with gas.  While they lounged in their car seats, enjoying the air-conditioned movie theater on wheels, something happened that has not occurred in many, many, MANY moons... a guy getting gas at the pump behind us asked for my phone number.  

My first thought was that perhaps I had forgotten to put one of my boobs away after feeding the baby & was advertising something I didn't mean to.  A quick check, and nope, the girls were tucked safely away.  My second thought was that this myopic, young man with a large tattoo on his neck must be recently paroled, desperate for female company.  Which was quickly followed by my third thought… wondering when exactly had I lost my self-confidence to be so completely surprised when some random guy asks for my phone number?  I realized that somewhere along the line I stopped thinking of myself as someone who gets hit-on.  Has motherhood totally stolen my mojo?  

Over the following months I’ve looked everywhere for said mojo… for that feeling of confidence, sex-appeal, self-assured ease.

So far I can tell you where it’s not…

… in the box of broken crayons that always ends up spilled.

… nestled against the cracked nipples, saggy boobs, or nursing bra.

… in a middle of the night diaper failure blowout.

… in my new (sensible!) shoes one full size larger than pre-babies.

… on the shelf that used to be my stomach.

… in the kids lunches that need packing Every Single Day.

… among the little-plastic-toy rubble that used to be a living room.

… on the time-out bench where I occasionally have to put myself for yelling too much.

… in the sticky underbelly of the mini-van seats

… at the summit of laundry mountain.

… in the valley of dishes.

… in the crescent of the dark moons under my eyes.

I find myself envious of the women who find rapture in childbirth, nursing, crafts, cleaning, cutting crusts off sandwiches.  Some women who, at first glance at least, seem to possess an endless well of selfless giving, finding sustenance for their own souls by nurturing other people.  Or those elusive creatures… Moms who seem to find a balance between the “me” & “mommy&me” times.  I’ve seen them around, at the park, at music class, at school drop offs.  I read their blogs online, filled with fun kid times, crafty cuteness and adventures near & far… and can’t help but wonder… how the hell do they do it all and look good too?  Is there some trade-off with the dark-side?  Or are they just a whole hell of a lot better than me at the balancing act?

As I pulled away from the gas station that day, I felt flattered & horrified in equal measure.  Flattered that even in my unkempt state (I was wearing the super-comfy shorts that I may have actually slept in the night before, hair in a messy bun because I couldn't find my hairbrush and a cute-ish tank top that by some miracle had no spit-up on it) someone I don't know, noticed me.  And horrified, because hello?  Mini-van, three kids, wedding ring... clearly unavailable.  And, eeewww... even young, care-free, full-of-mojo me would never give my number out to strangers at the gas station.

Make no mistake, I do love exactly where I am and who I have become, but I struggle with finding a place for “just me” among my many other identities. I miss the easy freedom of my younger days… a time when I didn’t have to worry about the needs, location or bathroom status of anyone but myself.  As a mother, it is sometimes hard to express this without feeling selfish or that I am being a whiner.  I have no regrets about the choices I have made in my life, but find myself with a melancholic longing for youth, freedom, simplicity.  I catch a glimpse of that girl from time to time, a little shy, a lot hopeful, so sure in her sense of the endless possibilities of life.  I know she’s in here still, patiently waiting between school runs and swimming lessons.  Showing up for a drive alone with loud music and the windows down.  Or a solitary movie matinee on a random Tuesday afternoon.  Or the grand prize, an evening with women who knew that girl, who have grown along with her, paths crisscrossing on their own journeys in the motherhood, careers and other worldly adventures.

 

I have a vague, cloudy memory of feeling this way around the time I stopped breastfeeding my second son and have to remind myself that I just* had a baby.  (*Just being a relative term… 13 months flew by so fast it really does feel like it just happened.)  I know that although I will probably never be one of those “all together mamas” who move with ease from kid/park/chicken nuggets to dress-up/husband/date night, I will eventually find my way back to a better balance and figure out exactly where that darn mojo is hiding.

be here now

I have been struggling all weekend with the need to write something, anything, about what happened on Friday in Connecticut.  Feeling so deeply that if I could just write something, process what happened, it would somehow make sense.  But it will never make sense.  And there are no words in any human language that can change that. 

All through the weekend I found myself drawn to the computer every hour or so, searching for new information, crying as the photos of the 26 began to appear, sobbing as I listened to a father talk about his Emilie.    After the boys went to bed I read & read... hoping for some kind of explanation.  As if knowing the why behind it all would keep us safe.

Like so many other parents, since Friday I found a little more patience, a little extra time and a whole lot of snuggles for my little ones.  Holding them close, knowing Monday would soon come and life would need to go on.  Dropping Quinn at school today I had to repeat the words, "Do not cry... do not cry... do not cry..." to myself more times than I care to admit.  With a kiss & an extra squeeze I said goodbye to my son and put my trust in the world that I would be able to pick him up in a few short hours.  Friday's events stay so close in my mind.  How could they not?

My heart aches for all those who lost loved ones.  For the first responders who saw first-hand what darkness looks like.  For the survivors who will have to find their way to a new normal, through sadness and fear and a loss of any sense of safe.  For all of us as humans, who are born, live and die exactly the same no matter where we live, what we believe or who we vote for.  One breath at a time.

As I looked around Quinn's classroom this morning, I took in the innocence, the energy, the wonder, of a room full of first graders.  I had to forcibly steer my mind in another direction... do not cry do not cry... focusing instead on the sweet smile and "hello Quinn's mommy" from one of his classmates.  On the patient and warm way his teacher greats each child individually every morning.  On the knowledge that these children have no idea what happened last week.  On the hope that they never will know, except perhaps as something they learn in history class one day.  About the event that turned our country in a new and better direction on the issue of gun control and support for mental health care.

Life moves forward.  Bad things happen.  Innocent people die.  All we have is this moment here.  Staying present and enjoying the hell out of it is the only way I can think of to keep moving forward.