Monday, December 31, 2012

I Did Graphics!!!

Squee!  I found TIME (great glorious wonderful stolen-in-the-quiet-of-a-midafternoon-nap time) to make the very first graphics of Hunter that I have ever done in all his almost-eighteen months!

Those who know what a graphic factory I used to be will understand what a big deal this is.  :)

Blogger hates photographs and, if memory serves, hates graphics even more, but let's see if it'll play nice.

Sunday, December 30, 2012

Veggie Meatballs

Hunter recently decided that he doesn’t like most vegetables.  What?!  My super granola crunchy-as-can-be-never-eats-processed-food kid doesn’t like veggies?????  Argh.  Sigh.  Is that a necessary passage of toddlerhood or something?  Along with absolutely adoring can’t-get-enough-of-it food one minute and then throwing it on the floor the next, accompanied by accusing you’re trying to poison me Mom glares?  Ugh. 

Anyway, I’ve been figuring out sneaky ways to get veggies in.  This particular recipe was such a major hit and contains so many undetectable veggies I thought I would share!  I tasted it too – it’s yummy even for those of us actually like rabbit food.

For the meatballs:

2 cups chopped veggies (broccoli or cauliflower works best)
½ cup chicken broth
1 cup ground beef/turkey/chicken
Salt and pepper
2 cloves garlic
Italian seasoning
Sausage spice
1 egg

Cook veggies in broth till they are soft and have absorbed all the broth (20-30 minutes).  Add garlic and seasonings and mash or blend.  Add ground meat and egg and mix well.  Form into mini meatballs (or patties or sausages) and fry in butter, leftover chicken/beef fat, or coconut oil.

For the sauce:

1 cup spaghetti sauce
1-2 cups veggies (Swiss chard, green onions, leeks and spinach all work well as they cook down nicely and are nutrient-packed)

Chop the veggies super duper fine.  The idea is to end up with miniscule specks a toddler eye simply doesn’t stay still long enough to see.  Cook in the tomato sauce till very soft.  Blend with blender if desired or if texture is an issue.  The amount of veggies than can be disguised this way depends on the picky eater you have.  I can do a two-cups veggies to one cup sauce ratio, but it might be less to start with.

Hunter absolutely went nuts over these, and I went nuts over all the vegetables he didn’t know he was cramming into his mouth. Next time I’m making a double batch and freezing more!

Saturday, December 29, 2012


written, obviously, on the last night of November...

On this, the last day of November, I go to bed with a heart satiated with thankfulness.  Not such a very un-ordinary occurrence on the last day of the month of Thanksgiving, eh?

Well, for me it is.  I’ve spent November in a roiling storm cloud of discontent.  Even on the days I didn’t feel like a hurricane bottled up into a jar, a sense of unease, an absence of peace stuck to the windows like dirty smog.

I totally flunked my NaNo.  Not because I didn’t try hard enough.  Because I didn’t have enough time.  I burned the candle at both ends and then squeezed the wax drippings into a bowl, but it wasn’t enough.  On the nights I stayed up late somehow I never got past the pile of dishes or the mountain of paperwork or the stack of schoolwork or the gargantuan heap of laundry dripping underwear onto my head.  And the mornings I got up before dawn had been invented, I somehow couldn’t seem to get past the avalanche of emails needing to be answered and doctors’ appointments needing to be scheduled and phone consultations with college and my lawyer and Hunter’s insurance and the To Do list which stretched from the top of the freezer to the bottom of the fridge.

It’s unpleasant living life at the pace of an cheetah-chased impala running for life.  Actually, it’s more like someone sucked out my soul and said I could have it back in three years.  I miss time so much.  I miss time enough to cook healthy food for us and have time to sit down at the table together and enjoy it.  I miss time enough to be spontaneous with Hunter whenever he wants.  I miss that extra five minutes that I already borrowed from the next half-hour when he wants to practice making kissy faces in the morning and I need to get out that door to work we’re late late late.  I hate the endless exhaustion and the nights when Hunter and I mutually cry ourselves to sleep because I just cannot summon the extra energy and patience to get up and rock him again.

I miss time to read.  I miss fingering through books.  I miss having the time to read friends’ stories and novels. 

But most of all (after the time I miss with Hunter) I miss the time I used to spend crafting, writing, turning ordinary bits of nothingness into something brand new.

And right now, I don’t have the time.  Life will continue at this breakneck super-stress scrabble-to-stay-alive pace for the next three years till I graduate school.  And after that…?

Anyway.  So last week I went down to a meeting of my neighbors (all women in similar circumstances) with this roil of discontent in my stomach.  The topic of Christmas came up, and one woman shared that she dreaded the holiday because she didn’t have money for gifts for her kids.  She didn’t even have money for bills in December.  Another had just started working but wasn’t sure if they were going to keep her on because she continually kept having to leave work to care for her toddler because she was unable to find safe childcare for her upside-down work schedule.  Across the street, the lights of the homeless shelter blinked a reminder of how many people wouldn’t even have a roof over their heads for Christmas.  And in my pocket, my phone beeped: an update from a good mom friend whose two year old son is in the early stages of bone marrow failure and is going to have to undergo a terrifying, risky transplant before a year is out.  Right below that update was another from my Down syndrome moms’ group: another family had just said their final goodbye to their six-year-old daughter who wasn’t going to make it through surgery.

I sucked in a deep, deep breath and that ornery storm inside me just shriveled up and went away.

Because I have so much to be thankful for.  I have a steady job which, while it may not pay very well, is fulfilling, rewarding, and allows me to spend all day with Hunter.  I rarely have to worry about childcare.  I have decent health.  I have a son who is amazing and wonderful and lights up my life every day and even though I may not always be able to spend quality time with him I have the ability to spend so much more time than any other single mom I know.  And while he has plenty of health problems, he is alive and doesn’t have leukemia or a heart defect that can’t be repaired or any of the dozens of tragedies that could have come along with his special genetic makeup.  We have a warm, clean, comfortable place to live, fresh, healthy food in our fridge, money to pay our bills, and a car that (in between periodic temper tantrums) starts up day after day.  I’m in school and moving steadily forward to a much, much better future.  We see God working in our lives every single day.

Our life is hard.  At least one point every day I have to squeeze my eyes shut, breathe deeper than I ever have before, and pray for just that last bit of patience or energy or resourcefulness to not give up. 

But our life is also overflowing with blessings.  And in the face of so much tragedy and hardship and sadness swirling around us, my complaints seem so very trivial. 

So, on this last night in November, I am thankful.  I am so, so thankful, so grateful, and so blessed.

Saturday, November 3, 2012

Playground Photo Binge

I took Hunter to the park this past weekend.  He wriggled out of the stroller the instead I popped the safety belt, and squirmed onto the ground where he froze for a moment like a bird dog on point.  You can see the ideas of what trouble can I get into first! running through his brain. 

First he decided to investigate all the climb-y things so plentifully scattered about.

After watching kids pop out of the bottom of the spiraly slide he crawled over, stuck his head up into it and hollered “Dadababa whowho wow?”  (Translation:  "Where do those kids come from???")

Then he sat and watched five kindergarteners pelt across the playground.

“They are so silly looking, Mom, wasting all that energy on nothing!”  (You should see yourself, dear.)

He sat in the sunshine and thought Baby Ninja thoughts.

After a while he got worn out and sat in peaceful enjoyment of the ebb and flow of playground chaos. He is so darn beautiful, isn’t he?

His chubby babyhands make my heart stop.


On the way home I saw this leaf and crouched down in the middle of the running path, one foot jammed behind the stroller wheel while I twisted into a human pretzel to capture the liquid color of it.


This, so far as I can tell, is the very first sunset I have clicked shutter on since moving back to Wisconsin.  In Florida, sunsets are an institution, and beach sunsets became my peaceful place.  In that glorious moment where the sky exploded into color, my heart would find content.  I thought it seemed fitting that this day at the playground, like a little bubble of stability in the whirlpool of our everyday life, ended with a sunset over a river which rivaled those over the ocean. 

Enter November!

It’s November!  I was excited to see the comments from Katherine and Kayla last time about their NaNo thoughts.  Kayla, how is it going for you????  Katherine, did you decide to do something this year?

For me, it’s only 3 days into my version of NaNo and I already bombed the first two.  :(  Both days I meant to write, had ideas to write, and even scribbled some sketchy wayward scraps onto paper, but Life interfered and nothing actually got done, other than teary diary writing at one AM this morning.  Big Gusty Sigh.

So I decided to revamp my NaNo goal this year.  Instead of writing every day, I will do something crafty or creative every day.  It might be scratching words on paper, or it might be a half-hour of twisting myself into a pretzel to photograph sunbeams through broken glass in the sidewalk crack.  Or it could be creating new clothes from the mountain of plus-size sweaters and shirts in my closet.  Or making Christmas gifts.  Or experimenting with papercrafting.  The only thing which doesn’t count is pinning on Instagram.  :D

And no, changing my goal is absolutely not cheating, because NaNo is about personal goals.  And while I want to wear the ink-spattered cloak of words again, to feel the buzz of characters and stories inside my brain, I also want to see jewels where others see broken glass, and I want to capture it on film so they can see the diamonds too.  And every other crafty thing.  I think NaNo for me this year is about taking hammer and chisel to the dingy brick wall which has held my creativity captive for the past two years.  That sounds melodramatic but in reality that is just how it feels.  I never realized how essential the act of creation was to the well-being of my soul until that part of me shriveled up in Florida.  And now that I’m out of that situation my soul is like a toddler just beginning to walk – it needs to create.  Now.  Now.  NOW!

Yes, I probably am certifiable. 

Anyway.  With my schedule of insanity writing and photography and crafting consistently make it to the cramped margins of my to-do list, which means they stay to-do and never get done.  And…that’s why I’m changing my goal to make them priorities instead of luxuries.  Unorthodox, but my creative soul is very excited.

Did I mention I love November?!

Thursday, October 25, 2012

The Shape Of The Eye

If you asked Hunter what my primary purpose in life in he would assure you that, after being an excellent source of a tasty beverage, it's to serve as a baby jungle gym.  To Hunter and C (the little boy I watch), my legs are obstacle courses, my arms are monkey bars, and my neck is convenient for hanging on (and occasional slobbery kisses).

The other day C clambered over my crossed ankles into my lap, and, fisting two chubby hands into the collar of my shirt, leaned back to study my face.  We were sitting in front of the window overlooked the garden, and sunlight filtered through the trees, lighting up the green and gold flecks in C's brown eyes.  C has trout-stream eyes, the color of sunlight on a leaf-filled brook.  Deep, soulful, absolutely gorgeous deep set almond eyes.

A moment later knees thumped on carpet and Hunter crab-lolloped over to lunge for his spot on the "baby gym".  He turned a laughing face up to me and the sunlight splashed into his eyes.  Hunter has eyes the intense, shocking cerulean of a Florida summer sky.  While C's eyes are deep-set and almond-shaped, Hunter's are shallow and round.  And while subtle color flickers through C's, Hunter's eyes are lit only with the twinkle of trouble.  He has the tropical land of his birth in his eyes and they are beautiful.

It was only after both boys tired of chewing on my collar bones and scampered off to squabble over their flashcards that I realized the whole time I was admiring (and yes, comparing) the two boys' eyes that never once had the thought of Down syndrome come into my mind.  I never thought that Hunter's eyes are smaller and shallower-set because he possesses an extra chromosome, or that Corban's are deeper and larger because he doesn't.  I only thought of them both as two little boys, unique and perfect in their own selves.

Which of course, is exactly what they are.

Monday, October 22, 2012

CLEP In Relation To NaNo

know are stocking their cupboards with coffee, chocolate, and new pencils in preparation for NaNo (known to non-writers as November).  For those non-writers, NaNo is the time of year where writers—always a bit on the quirky side—go completely over the edge and attempt to write 50,000 words or a complete novel (whichever is longer) in thirty days.  Yes, I used to do this.  Yes, I won twice, and the last year, wrote over 100,000 words.  Then came Florida, a baby, Down syndrome, and Bad Stuff, and single mommyhood, and school and work…yeah.

Hard to believe that I wrote in one month more than I’ve written for the last three years.

Anyway, this time of year is a bit wistful now.  I still open all the NaNo updates which spatter my inbox, and I lurk the forums late at night when Hunter won’t sleep, and I watch everyone else get excited about words and writing and 30 days of crazy comradeship and I miss those days…

But I didn’t intend this post to be an melancholy reflection on the past, but a hopeful prediction for the future, and a giggle for today.  For the future, I’ve decided this year that I will do NaNo.  No, I’m not going to try to write a novel.  I’m not even going to set a word count goal.  What I am going to do is resolve to write something for thirty days.  No excuses.  It doesn’t have to be fiction.  Most of it won’t be, I expect.  But it has to be creative writing of some sort, and it has to be every day.  And now I’ve committed it to blogosphere and I would love to be nagged at for the duration of the MonthOfCrazy.

And for the giggle…today I took my College Composition CLEP exam.  I was horribly underprepared due to the insanity that has been October, and I didn’t realize until last week that I had to write two essays, with only 30 minutes for each.  I had only one day to practice, and only time for two essays. 

The first one was a disaster.  I barely finished it in the time restraint, and it was full of grammar and spelling errors and confusing verbage of all sorts. I knew it wouldn’t even pass.

I sat down and had a quiet panic attack.  Then suddenly the 30 rang a bell.  This is just like NaNo!  As a quick insert here—everyone does NaNo in a different way, but my preferred method is to write out a very detailed outline, and then literally flesh out the outline.  So, that’s literally what I did today.  I NaNo-ed my way through my two essays.  And although I made two stupid mistakes in structure (forgot to indent the first one and forgot APA citing format on the second) I think overall the essays turned out very well. Perhaps it’s just the 4 hours of sleep I’m running on, but I think it’s absolutely hilarious and not a little bit plain and simple awesome that I NaNo-ed a test.

So in conclusion to this very jumbled post…to all those of you who are putting the finishing touches on your NaNo preparation, GO GET THOSE WORDS!  And please comment and let me know what your November plans are!

Saturday, October 20, 2012


Ugh.  Another months-later blog post.  I want to update this blog regularly.  I think about updating this blog regularly.  I scribble half-finished blog posts on the back of grocery lists and college applications.  But actually get them typed and into blogosphere? 

It’s all Hunter’s fault.  Literally.  If I so much as pull the computer out of its case he’s scrambled over and into my lap and is begging “Babaggaa oooooohhhh mamamama meeeeeee?”  (Translated: I want to push allllll the keys and reprogram your computer, now get out of my way and let me at it!)

Anyway.  I’ve had some requests for an update and so I thought I would mash it all into one post.

Four months after leaving palm trees and beachs behind, and three months after moving into our Wisconsin apartment, we’ve settled in pretty well.  I found a new nanny job within a week (!!!) after getting to Wisconsin.  I’m watching only one little boy, a few months younger than H.  Keeping track of only two kids is a far cry (and several decibels quieter) than the six I watched in Florida!  I miss all the action of the family I used to work for, and I really miss the family themselves, but I also enjoy the one-on-one attention I can give with a smaller amount of children. 

Anyway, the job is going well.  The two boys are buddies—actually, they’re more like a really small gang.  They skitter around the house with eyes wide open for the quickest available trouble.  When I catch them unloading the recyclables or gleefully pulling all the tissues out of the box, they exchange glances and then turn vapid smiles on me.  “Who, us?  We didn’t do anything  We just found it like this.”  Riiiiggghhhttt.

I have also officially gone back to school.  I’m working on prereqs right now, hoping to enroll in the local RN program by nest fall.  More, definitely more, will be written about that.

Hunter is – well, complicated.  In my “Wisdom of Turtles” post I talked about the regression he was going through and mentioned food intolerances as a possible culprit.  Turns out it was food related and it was going to get a lot worse.  We went from lethargy and red blotches to vomit, diarrhea so acidic blisters popped out on his bottom, and two pounds lost in a month.  By the time we moved to Wisconsin I had a baby so skinny his shoulder blades poked like chicken wings from under his onesie.  Finally, we found a good pediatrician and under her supervision I started a modified version of the GAPS diet.   (I’ll be writing a more detailed post about GAPS soon.)

It took almost two weeks to see measurable results, but we are finally seeing some improvement.  No more diarrhea (I spend a disturbing amount of time examining poop now), no more acid burns, no more vomit.  He is totally grain-free, sugar-free, dairy-free, and additive free.  He’s also mostly fruit-free and he can only tolerate a limited amount of fiber.  The bad news is I spend all my time in the kitchen.  The good news is I am becoming an extremely creative cook.  The best news is that the chicken wings are gone and the dimples above the diaper are back.

He is still tiny, though.  And we have no real answers for what is going on with him.  Blood tests revealed no measurable growth hormone, but the endocrinologist said that could be merely due to his body being unable to assimilate nutrition.  Allergy tests have come back negative.  It’s discouraging, especially since I feel like a hypochondriac after the allergy tests came back negative.  I’m trying to (literally) trust in gut feelings and realize that even if the tests aren’t conclusive, I can see that he does better on a meat and vegetable diet and that he vomits instantly after eating dairy, etc.  We’re being sent to GI  and hopefully they’ll have some answers.  Next step is to make double sure what he does eat covers all his nutrition needs.   

So, in a few hundred words, that’s what’s going on with us.  There’s more, so much much much more, but that will have to wait for Hunter to go…to…sleep…

 Me?  Sleep?  Hahahahaha!

Sunday, September 9, 2012


This is an open letter to the people in my life who, despite being asked not to, continue to use the word “retard.”  I’m sad and disappointed – no, I’m shocked and dismayed at your oblivion.  All of you I love dearly.  All of you have greatly enriched my life and now the life of my little boy.  All of you are smart and well educated.  You all keep up with current events and hold carefully-thought-out viewpoints on controversial subjects.  All of you are caring, loving, thoughtful people.

You don’t think saying “retard” is bad.  What’s a slip of the tongue?  After all, no one can be politically correct all the time.  And so, you say things like: “I completely forgot to change and wore my fuzzy slippers to my job interview?  I looked like such a retard!” or “She’s wearing red skinny jeans with an orange top – that’s just retarded” or “Everyone in his family hates him.  He’s such a retard.”  Sometimes you even say “He is such an stupid person.  I don’t even want to waste my breath telling you how retarded he is.”

When you say that, you just hear a word like any other.  But let me tell you what I hear.  I hear that people with mental disabilities look ridiculous and have no fashion sense. They have no clue how to appear beautiful.  They are creeps who people hate.  They aren’t even worth the time it takes to insult them.

That’s what you’re saying.  You’re saying that my beautiful, funny, clinically retarded son is stupid and ugly; a creep and not worth the breath it takes to dismiss him.

Don’t tell me “Well, I never meant Hunter!  I never think of him as retarded!”  Does that mean my kid’s in the cool group because he doesn’t act that different, and the little girl down the block with cerebral palsy who drools and tics with shriveled, atrophied hands is free game for ridicule??

And don’t tell me that it’s just a slip of the tongue.  Has your tongue slipped and called anyone a nigger lately?

Using the word “retard” is just as hurtful and cowardly as using the word “nigger.”  I think in a way it’s more cowardly, actually, because it targets a group of people who aren’t able to defend themselves.  Most people with cognitive disabilities can’t board a bus and lead a revolution like Rosa Parks, or stir millions to action like Martin Luther King Jr. (Though some can and they are making a difference!)

That’s why I’m writing this.  Not just for Hunter.  For every cognitively disabled person out there who has to hear themselves called names in the grocery store, on the street, even in church.  I’m writing this for those who can understand what they’re being called, and even more for those who can’t.

And I’m writing this for you too, all you smart, loving, amazing people.  Wake up, okay?  Please open your ears to hear what your mouth is saying, and your heart to understand the hurt it’s causing.  Open your eyes to see that the people you’re calling “retards” are just as amazing, smart, and loving as you.

Tuesday, July 24, 2012

Birthday Number One

(this should have been published on July 6...blame a cross-country move that it wasn't)

Today Hunter turns one.  It’s beyond belief that he’s been in my life for a year.  Being Hunter’s mother has an odd tinge of eternity about it – impossible to believe he’s been my son for a whole year, or for only a year.  Time doesn’t seem to be relative.  I can’t remember who I was before Hunter.

I do remember who I was before Down syndrome, though.  Early one morning this birthday week, I woke before Hunter did (a rare event, usually to be celebrated by immediately going back to sleep) and lay in the cool blue light of just before dawn, my mind going back three hundred and sixty-five days to a dimly-lit hospital room.  I remembered my body, sore and exhausted from toes to scalp, but my heart exploding with joy as I looked at the tiny pink scrap of babyhood under the heat lamp.

I remembered the peace, the sweetness, the worries over small concerns like a cell phone not working.

I remembered the doctor entering, poking and prodding and frowning.  And then I remembered his eyes meeting mine only to flick away, and the five words which shattered the future I’d dreamed of into a million pieces.

“Your son has Down syndrome.”

I remembered beginning to cry.

Three hundred and sixty-five days later, those words still slice into me like bullets.  Tears well, and I cry.  I roll over in bed next to my son who has Down syndrome.  He’s sleeping soundly, small dimpled hands folded beneath a chubby cheek.  One of my tears splashes onto his nose and his face crinkles up in disgust.

Laughter bubbles up.  Because I’m not crying over my son who happens to have an extra chromosome.  I’m crying for me, the me in a dark hospital room a year ago, who had no idea how good life was going to be.  I want to go back and give me a hug, and then a good shake.  “You’re going to be fine!” I would say.  “Just fine.  Better than fine.  This little boy is going to turn your life upside down and a tie a knot in it for good measure – and it’s going to be good.

And on this birthday morning, life is good.  Oh, don’t get me wrong.  It’s also hard as hell.  Most of that isn’t connected to an extra 21st chromosome, but some of it is.  Being a single mom is hard, and being a single mom of a child with Down syndrome is much harder.  I’m not a big fan of Down syndrome, although it has won some grudging respect from me. 

But I am a big fan of Hunter.  My son is fine.  He’s better than fine.  He’s supercalifragalistic, with a sprinkling of extraolidocious.  In one year he has changed for the better more people’s lives than the average man does in twenty years.  He’s funny, brave, charming, and utter perfection.

I don’t know what the years ahead hold, but I know if Hunter keeps being Hunter, they will be just fine.

Happy birthday to the most amazing little stinker this side of heaven.

I love you, Hunter.

Friday, June 15, 2012

on chaos and the wisdom of turtles

Today has not been a good day as a special needs mom.  Hunter has been dealing with some health issues lately.  I'm not sure of the cause (though I suspect food/environmental allergies) but I can't help but see the toll it's taking on his personality.  Something I can't identify has been stealing away his energy, his spark, his sass.  There's been a lot of staring into space lately, a lot of repetitive banging of the same two toys together, a lot of sitting, mouth open, in the middle of a group of kids, too overwhelmed by their activity to take part.  In other words, a lot of everything-I-am-most-afraid-of-about-Down-syndrome.  I don't know what's going on but it's kinda scary to see my little boy's personality slipping away.  

The whole thing is probably made worse by the endless stress in our lives.  The nanny job I hoped I had lined up in Wisconsin just fell through, leaving me with dozens of applications, a handful of interviews, and nothing definite.  On top of that I have to find housing, figure out whether our ancient van will survive the journey,and all the other details involved in moving across the country.  Oh did I mention continuing to work extra hours on top of it all? and handle every other details of life?

I'm exhausted. Scared. Terrified this is the wrong decision.  Terrified of making another the wrong decision on top of the wrong decisions I've already made.  I'm not sure if I can make a right decision anymore.  Add to that the crushing questions of how am I going to go to work, have a full time job, pay my bills, go to school, get good grades, graduate, work another job - all while taking care of a special needs child all by myself.  How am I going to give Hunter the care he deserves? the life he deserves - all by myself.  It's a boulder pressing on my chest, pulling out my back, crushing my shoulders down.  

Anyway, today I had to return some (unwatched) movies to the library.  After missing an appointment at the pediatrician's, I loaded a hot and cranky little boy back into the un-air-conditioned van and headed downtown, planning to drop the movies in the drive-thru box and return home at once, spending as little time as possible in the 95 degree heat.  But when the van bumped over the parking lot entrance, I looked at the squat brick building and thought about cool air conditioning.  (Yes, it is THAT hot that instead of planning my errands around efficiency I plan them around air conditioning.)  I swung into park and headed in, the heavy bookbag thudding into my knees, my shoulders tight with frustration and anxiety.  My fingernail picked at the label of the DVDs as I stood in line to return them.  

Then, as the air conditioning washed over us, I hesitated, then half-without thought stepped out of line and wandered into the non-fiction sention of the library.  Hunter wiggled and squirmed to get down so I plunked us both down on the carpet.  He promptly threw up.  I wiped it up and laughed a little as he grabbed at the rag.  The tension between my shoulders eased as he turned his attention to a large book on the shelf, and I realized it was the Encylopedia of the Horse, an enourmous weighty jewel of book filled with facts and photos.   It was my favorite book as a child.  I helped Hunter haul it off the shelf and turned the glossy pages for him to see, a bit nostalgic as memories of previous readings returned.  

After a bit we selected a few items and headed back to the checkout - but once again I stopped.  The door to the children's room was open, and I caught a glimpse of the big aquariums in the connection hall.

Once more on impulse I headed in.  I shrugged my bags to the floor and stacked the books nearby, then stood Hunter up against the glass.  A school of minnows glittered over.  Hunter cooed in startled delight.  He flattened his hands against the glass, making sweat-sticky palmprints.

Then slowly, from behind a rock, three turtles swam over.  They hovered, barely moving, their noses bumping the glass.  Babbling, Hunter leaned forward till his sweaty nose bumped the glass too.

The angry simmer of anxienty in the back of my head hushed as I watched the turtles swim slowly to the surface, breathe deeply, then dive low again to watch my son through their never-blinking eyes.  Hunter smashed his face up against the aquarium, pausing only long enough to look at me and exchange a quick this is so cool! grin.

Perfect stimulation, my therapy brain thought.  "Turtle, one, two, three turtles" I said, reinforcing the information.

And as Hunter ignored me and chattered to the turtles, I closed my eyes, pressed my face into his fuzzy head, and dared to think The Thought.  

What would my life be like without Down syndrome?

What if I had a typical child, with designer JEANS not GENES?  What if thoughts of therapy and stimulation weren't flitting through my head, and instead we'd be just a mom and a kid watching some turtles?

Then it hit me.  If Hunter didn't have those special genes, we wouldn't be watching turtles.  We'd be in that hot sticky car.  I wouldn't be sharing a moment of wonder with my child - I'd be changing lanes, my mind tangled with the long to-do list to be completed at home.

And that's when finally peace entered my heart.  Yes, it's been a hard week.  Yes, being a special needs parent sucks much of the time.

But not all of the time.  Hunter's challenges add a new dimension to life, a slower, more peaceful dimension, where I spontaneously squat on library carpets and read my favorite books to my kid, where we pause to take stock of our blessings.  Where, like turtles, we move slowly, breathe deeply, and take in the world through unblinking eyes of wonder.

So guess what?  The rest of this week, I'm going to try to slow down just a bit more.  To appreciate how awesome my kid is RIGHT NOW, not how awesome he was a month ago.  When I hit post on this, I'll go wake him up just for kisses and hugs.  

And then, we'll probably head to the beach.  There's only so many more sunsets left.

Monday, June 4, 2012

Upside Down World

Wow.  It's been six months since my last post.  Feels like a lifetime or two ago.  

On February 2, 2012, I became a single mom.  I don't really want to go into details now.  I may or may not at some future point.  But suffice it to say what happened was beyond my control.  In a way beyond his control too.  Being a single mom is not a choice I made, but a path I was forced to take.  I'd like to say I made a quiet, firm stand and chose a better life for myself and my son, but in reality, a bomb hit my world and I'm still digging my way out of the dust and rubble.  I'm trying to find the surface and the sun again.  Sometimes I get little glimmers through the dark, but as yet, I haven't found it.

After a lot of thought and prayer Hunter and I are headed back to Wisconsin at the beginning of July.  I'm really happy to be headed back to apple trees and autumn leaves and freshwater streams, to family and the smell of home.  I'm really scared too, as I'll be leaving my nanny job that I love and the life I've built here in Florida for new unknowns.

Goals, present and future?  Find another nanny job in Wisconsin, find affordable living and get settled with my munchkin.  After that, school, specifically nursing school.  

Everything in this new life is strange.  I feel like an avatar on Pandora.  New body, new world.  Nothing's the same.  The colors are different, sharp and stark.  The sounds are unfamiliar and startling.  

Only one thing's the same, and that's the mommylove I have for my little guy, my Mr. McScooty.  We had a newsflash of national importance last week, containing four crucial words:  WE HAVE FORWARD MOTION!  Somebody's mobile and crawling all over the place.  He isn't strong enough for hands and knees yet, so he scrabbles and kicks and flaps his arms forward, exactly like a baby sea turtle flopping across the sand toward the waves. When I come in the room, he clambers over to me and then throws himself across my feet, patting my legs like a puppy begging to be picked up.  It's heartmelting.

There's a lot more to say, but little time before midnight, and after three nights of Hunter wanting to wake up and play at 3AM, I need some pillow time.  I'll be back.  With any luck, sooner than six months later.  ;)

In the meantime, check out this cuteness.  Yes, I do have the most adorable baby in the world.

Saturday, January 14, 2012

Guess What? We're Back!

Wow. It's been months since I posted an update here. This blog is spotted and smirched with cyber mildew from too little use!

Reasons why I haven't updated: too many to list! Primarily lack of time. Today is the first day in a very long time (ie, since the last blog update) that I've been able to make it to the library (my only source of computer web access) longer than the mad dash in to return books and DVDs.

Anyway. Lots have been going on in our little corner of Florida, but before I post a recent update, here's an update I wrote at home about a month ago!

(written sometime circa November 30)

I have NO TIME anymore.

Forget Daylight Savings. Can we please invent a drug that replaces the need to sleep? Either that or put a lot more than one extra hour into the day...

I don't know exactly where all my time goes. Sucked into the fire-flash of the Time Vortex – or wait, that's Doctor Who...

I'm jibbering. Enough.

For not having any time I've managed to find quite a few spare seconds (and minutes, and hours) for worrying about H-man. Some wise mom in blogland wrote that life is enhanced for special-needs parents. Our lows will be aching, crawl-under-the-bed-and-cry lows, but our highs will have us winging over the obstacles like triumphant eagles.

I've been under the bed a lot lately, but I've also stretched my wings.

There's no particular reason for the lows... Hunter is still doing fabulously. His five month birthday on December 6 is dashing toward us, and in the last month my munchkin has mastered:

  1. Rolling! Backward, forward, clockwise, counter-clockwise, any ol' way you prefer. He even showed off for his therapist, and she confirmed his proper form and nice control. Yay! One more milestone right smack on time.

(2) Hand skills! Just today he showed me how "handily" he passes toys from hand to hand, and finished by grabbed the mail from me and crumpling it nicely. He also broke his first dish the other day, when he grabbed it from my hand and flung it across the room. Thus begins a long and infamous career of smashing stuff!

(3) Overall core and body strength. He's able to easily pull himself to a sit by grabbing our thumbs, and he's constantly pushing himself upright in my lap. It's so exciting to see him gain control of his body.

(4) Social skills. Mr. Flirt has always been socially precocious, but he's really gaining lately. He understands humor as well as all the other emotions, and carries on delightful conversations with me. Perhaps his replies are limited to "Oo-ga" and "Argh!" but he puts such inflection into his talking! :)

Perhaps the reason I've walked around with a lump in my throat lately is because I expected life to be so much harder. Life with H-man is a joy, a thrill, and a privilege. I'm thrilled to be his mom, and if this is all Down syndrome has to throw at us: well, BRING IT ON is all I can say!

Deep down, though, I know we've been very, very, very blessed. Last month I cowgirled up and headed to our first Buddy Walk. Don't know where I found the guts, but they got a pretty good pounding that day. Each time I saw a toddler struggle mightily to walk (or crawl) or the frustration in the teenager's eyes as he tried to force his tongue to speak clearly – a fist socked me square in the stomach.

So many families, so many kids have it so much worse than we do. Their reality is hard, and they've had to find acceptance on a much deeper level than we have.

Perhaps that's it. Even while I thumb my nose at Down syndrome I'm scared. Because we haven't walked the dark side yet. We haven't sat outside an operating room, or waited months for every milestone. Fear only found a temporary stay in our hearts.

I think I'm sitting here waiting for the next shoe to drop, waiting for the day Down syndrome decides to make itself known in our lives. And I'm scared. If the other shoe does hit the floor, will I be able to cope? Will I find acceptance?

Will I be able to find this much unquenchable joy in Hunter even if he doesn't progress a day further in his development?

I think so. I hope so.

He just looked over and gave me his cheeky one-sided smile. Oh, I've still got a cold spot in the pit of my stomach. But the love in my heart just keeps burning more and more.

All that I know is that I have one AWESOME little guy who's rockin' this world like nobody's business, and I'm so excited to be setting out on our adventure together.

And here, cuz I know you want them, are some recent-ish photos of my guy!