Where was God?

Since the Sandy Hook Elementary School tragedy on December 14, my heart– like the hearts of parents across the world– has been heavy.  I have not let my second grader out of my sight since I picked her up from school on Friday afternoon.  We have cuddled more, talked more, touched more.  I have listened more.

And I have thanked God for every minute because I know how precious and un-guaranteed our time together is.

Before I collected Hannah at school on Friday, I went to my son’s residential treatment center to pick up clothes and medicine for his regular weekend visit to his Dad’s house.  Alex had been in the hospital because of stomach issues since Tuesday afternoon.  He was discharged after lunch on Friday.

When I left Alex’s room and crossed the hospital lobby Friday morning, I said a silent prayer of gratitude.  We are blessed to live close to a world-renowned children’s facility, and everything about it is exceptional.  The lobby has wide open space and designs that catch the light and make patients feel like the folks who work there don’t have to commute to work because they must just descend from the heavens right through the skylight, like angels.  Everyone– from the security guards to the surgeons– loves children and cares for their families as if it were second nature.  When I walked through the hospital on Friday, I felt comforted, cared for, safe.

That was before I heard about the shooting.

On the drive back to our neighborhood with Alex’s things that had been laid out on his bed by his staff neatly tucked into a bag beside me, I listened to our local news station and began to cry in the car.

Eighteen children, they said then.  It couldn’t be.

Between the ages of 5 and 10, they said then.  No, no, no….

A familiar pain pierced my insides, the sort of heartache that makes new parents leave the movie theater after a child-abduction scene or stop eating beef when they hear a news story about a school-age kid dying after ingesting a half-cooked piece of hamburger.  You know– the kind of pain that is not from your own family experience, but that threatens your security anyway.  That makes you want to hug your kids right-this-minute and find some-kind-of-comforting words to say to the other parents, because you know it could easily be you who needs the comfort-that-no-one-can-really-bring-you-no-matter-how-hard-they-try.

I dropped off Alex’s bag and sped to Hannah’s school.  More cars than usual were waiting early.  I walked to the front lawn and stood with my hands in my pockets, trying to keep casual and not let the thousand words in my head explode on the scene all-at-once.

I looked around at the other parents, a beautifully diverse crowd of every color, background, family arrangement.  I looked at the school and the artwork in the windows.  I looked at the houses across the street with their holiday decorations and shutters and shrubbery. 

I realized in a more-than-speculative way that no one, anywhere, is really immune from the tragedies that hit the news.

I caught the eye of Hannah’s first grade teacher and she crossed the lawn to meet me.  I had been keeping friends updated about my son’s health and sending prayer requests over the previous days and she was happy to hear that Alex was out of the hospital.  As she embraced me, she said:

“I gave Hannah two big hugs today– one for her and one for you.”

Again, I felt comforted, cared for, safe.  And grateful.

Hannah and I spent a quiet “girls’ night” watching movies, eating popcorn and chatting with friends who were staying with us for the weekend.  I thought about how we will talk about this terrible thing that happened, and I wondered what she will hear at school on Monday and what questions she will ask.

As the weekend continued, I learned more and more about what happened at Sandy Hook.  Now they were saying twenty children…

… first graders….

Last year my first-grader Hannah amazed me with what she learned and how she grew.  She was a compassionate, beautiful light in our family and my proud mama heart secretly felt there was no way she could ever impress me more.  Then came this year, when she has blossomed beyond my expectation.  I listened to more news stories and I cried for the parents who would never know that second-grade feeling.

I choked through a video of heroic teacher Kaitlyn Roig explaining how she hid her students in a tiny bathroom and told them they were loved because she believed that was the last thing they would ever hear.  I sobbed reading about 27 year old Victoria Soto who hid her students in cabinets and closets, saving their lives by telling the shooter the kids were in the gym before he shot and killed her.

Aubrey told me I had to stop watching the news and reading the stories.  But I didn’t.  Like everyone I knew, I was searching for some meaning, wrestling with questions no one can really answer: 

Where was God in all of this?

What precipitated such horror?

How would the press, the doctors, the “specialists,” the politicians, the parents respond and explain?

When the reporters said the words:

“… autism spectrum… mental illness…”

I looked for the first time at the face of the 20 year-old killer.  I have only seen one picture of  him because I cannot bear to look any closer.  In the picture he looks young, skinny, with a mop of brown hair.  More innocent than his actions would reveal him to be.

And more like my son than I had expected.

I read a beautiful post at ProfMomEsq by the mother of a 5 year old daughter on the autism spectrum.  She writes:

“My little girl has so very much in common with the 20 young lives cut short by a senseless act of violence.”

She goes on to describe her heartbreak at hearing implications by reporters that the killer may have done what he did because he was somewhere on the autism spectrum.  When I read her post, I felt heartbroken too.  There is something about people making the connection between autism and what happened to 20 innocent children at Sandy Hook Elementary that is not only wrong and unfair, but that saps the energy of parents like me, somehow twisting the sadness we feel into anger and defensiveness.

And the truth is, as Prof Mom Esq plainly and clearly stated:

“Autism is a neurologic disorder; it is not a mental illness.”

Still, even as armed with information and resources as I am, a choking, cold grief encompassed me last night as these different stories and images came together in my head.  My daughter, so like the child victims.  Her compassionate teachers and suburban school, so like Sandy Hook Elementary.  The parents…

And a troubled boy in a photograph who did this terrible thing.  A person we all will speculate about and condemn and probably never, ever understand.

Autism does not cause violence.  And violence does not always come from expected or explainable places. 

My autistic son is not a murderer and I have to believe he is not in danger of becoming one.  But he is challenging and misunderstood and often troubled.  And I am a parent who has been asking for help for him continuously since he was a toddler.

How many other parents are out there, asking for help for their troubled children right this minute?

Another post crossed my desk today, written by yet another mom, Liza Long, with an important, heart-wrenching, difficult-for-most-to-imagine perspective.  She is raising a son who has intense behavioral challenges and she questions the available resources for those with mental illness.  She writes:

“In the wake of another horrific national tragedy, it’s easy to talk about guns.  But it’s time to talk about mental illness.”

This mother passionately advocates for “a meaningful, nation-wide conversation about mental health.”  And I agree with her.  We need to talk openly about the needs of families and individuals in crisis so we can find things that work instead of creating more problems for them within a flawed system.

So where was God on Friday?  And where is our Higher Power, the Universal Good now?

I remember a story years back about a special needs child who was given a chance to play in a little league baseball game.  Thanks to his peers who made sure his attempt at bat was successful, he scored a home run.  The boy was overjoyed of course, and his father later remarked that he felt the true miracle was not so much in how his son experienced that day, but in how the other kids came together to make it happen.  The boy’s gift to the world– what the father believed his son was put on earth to share– was the opportunity for such miracles to take place.

I believe that is where God is– in the middle of those miracles.

God is between the conversations we are having right now.  He is in the pain we feel, in the ways we are compelled to reach out to each other.  He is in the actions we take to give another person the sense of comfort, security and safety we so desperately crave.

There is nothing that can be done to put the broken pieces of the tragedy at Sandy Hook Elementary back together the way they were.  Humanity is broken and imperfect all the time.  But perhaps all the bits and pieces, the grief and the sorrow can come together in a way no one could ever have predicted.  Perhaps God did not desert us.  Perhaps the miracle is not hidden somewhere in those horrific events or in all those circumstances that came together in all the wrong ways to cause unimaginable suffering for the Newtown, CT community.

Perhaps the most important miracle is yet to be uncovered.  

Maybe it is in the way we will come together now to make a change,

to create a different future,

to have a “nation-wide conversation,”

to open our minds and hearts to the misunderstood,

to protect the innocence of children,

to heal the traumatized…

Perhaps God is here.

unexpected miracles 003

I am grateful for everyone who has felt compelled to write over the last 48 hours and for their honest, raw, heart-felt words.

I have found my higher power in-between your letters and essays, and in the courage you found to share your thoughts.

Thank you.

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“God bless our whole life together”

 alex avatar2

Today I am grateful for:

  • Hope.  Plain and simple.  Sometimes I don’t realize that I’ve lost touch with hope.  I have all these quotes taped to my computer (“All is well, out of this experience only good will come” and “Optimism is the faith that leads to achievement” and “Leap and the net will appear” etc.) and sometimes I think I do have optimism and faith and I am trusting and leaping freely.  But then I realize somewhere along the line hope has actually slipped to the back of my mind, that I’m not as free as I had thought, there’s something heavy in the background sitting on a small but growing patch of anxieties.  When hope appears again, the relief I feel is like a cool breeze from the ocean on a hot beach day– I don’t realize how I had missed it or how sheerly *good* it feels until it comes again and reminds me.  This week I saw the movie Wretches & Jabberers for the first time.  It brought that feeling of hope back to me.  Not because of the story or the specifics, but because as I watched this film another window opened in my mind.  My proverbial “house” where God closes doors and opens windows became bigger and through the new open window created by these filmmakers came a gentle ocean breeze which awakened hope again in me.
  • Rainbows & nail polish.  I painted my toenails last night, each toe a different color like a rainbow, because Aubrey & I will be attending the Pride festivities in San Francisco.  Why something so mundane on a gratitude list?  Because I like pretty toes, because I can afford five different bottles of colors (cheap colors, but colors nonetheless!), because I like sandal weather.  And most importantly, because I live and work in a place where I can be open about who I am and I can show it on my toes.  How grateful I am for openness and acceptance!
  • Bedtime prayers & Alex’s words.  “Wretches & Jabberers” had a profound effect on the way I see the whole autism world.  One of the two main characters in that film, when asked what people with autism are like, responds:  “More like you than not.”  I know that.  Of course I know that.  But deep down that line stirred something in me.  It brought all the advocating, writing, fighting, learning, stretching, wanting, waiting, worrying, trying & planning & crying & wishing I do for Alex back to the realm of typical mother.  I do all that because I am mom, not because the autism needs to be solved.  The communication gaps need to be bridged, the awareness needs to rise.  But my beautiful boy is still– definitively– more like me than not.  Looking through this new, hope-full window last night, I cuddled up with Alex for bedtime prayers.  We said our usual stuff, we said thank you, we asked God to keep the people we love happy & healthy & safe.  I told Alex I am proud of him & I know how smart he is, that I’ve known it all his life, I have always believed in him and always will.  Then I asked if he had anything else to add to prayers.  He paused a minute, looked at me thoughtfully and said:

“God bless our whole life together.”

Amen.

autism home rescue 0620201201

overly ambitious good little homemaker? *guffaw & snort*

As you all know from my most recent post, I’ve been doing a lot of housecleaning and cathartic purging, discarding, shredding etc. etc. in the last few months.  Yesterday, while digging through the umpteenth file folder in a huge collection of “important papers” (hear the sarcasm in my voice), I came across a napkin.

Yes, you read that right.  A napkin.  From a Cracker Barrel restaurant somewhere on the East Coast between South Carolina and up North where I live.  It was a list I had written with my mom on the way back from a trip to Hilton Head when Alex was three months old.  I can still remember him sleeping contentedly in his baby bucket thing on the seat of the restaurant booth, tucked in next to me as I brainstormed and scribbled excitedly.

Why on earth would I have saved this napkin information, you ask?  Because it was a very important list– it contained 41 ways that I could save money, which put together I figured would give me enough of a cushion that I would be able to quit my job and become a stay-at-home mom.  A decision which would radically, completely change my life.  And one which I was hell bent on making despite my new-mama anxieties.

I look back now and realize how little I knew then and how many trials and tribulations were yet to come.  But I saved that silly napkin in a file labeled “Home” because when I read over it, I can still feel the optimism I felt taking action, being proactive, finding creative solutions to obstacles (real or imagined) so that I could follow my heart and my passion.  I still haven’t decided if it’s staying in the “important papers” pile or going to the circular file.  After you read this, please comment and let me know where you think it belongs.

Things to do to save money:

  • make sandwiches for hubby’s work
  • make baby food
  • use coupons & research store specials
  • sell quilts
  • make baby clothes
  • make baby toys (patterns from Mom)
  • plant vegetables (tomatoes, green peppers, red peppers, lettuce? green beans, zucchini)
  • less driving
  • make my clothes
  • make cookies
  • cook everything from scratch
  • bake bread
  • plan leftovers & plan meals for the week
  • buy meat in bulk & pre-cook or pre-package & freeze (e.g. meatballs)
  • freeze onions & peppers for stirfry & precook chicken & freeze
  • shop more at the warehouse place
  • make hankerchiefs
  • switch electric companies
  • turn heat down & monitor A/C
  • turn hot water down a few degrees
  • free dinners with Mom Mom on Sundays
  • make baskets for gifts
  • shop for gifts, socks, etc. at my favorite outdoor market
  • feed & seed the lawn 2x / year
  • buy large cans of cat food & separate
  • wash my own car
  • all phone calls after 7:00 pm
  • internet after 7:00 pm
  • make popsicles & snacks
  • make trail mix & granola
  • buy only washable clothes, not dry clean
  • dry clean in dryer
  • keep breastfeeding & pump extra milk to freeze
  • shop in Delaware with Mom Mom
  • lose weight (fit into existing clothes!)
  • can veggies
  • develop pics at warehouse place
  • use the pizza stone– make & freeze dough & topping ahead of time (or make frozen pizzas)
  • freeze beef & chicken strips
  • letter to adoption agencies & advertising services for freelance opportunities to make money
  • switch to cloth diapers

Are you laughing yet?  You can tell we were a family who spent a lot of money on food– good lord how many things did I think I could cook?  I must have been having nightmares about starving or something.  In reality, I was still the size of a small Volkswagon Bug (see item titled “lose weight!”) so I couldn’t have been too bad off.  Hmm… maybe I wrote this before our food arrived at Cracker Barrel and I was brainstorming while hungry… kinda like grocery shopping while hungry… is that a no-no?

Come to think of it, how the heck did I figure that losing weight was going to go along with all that frozen pizza dinner preparation anyhow?  But I digress….

Making baby clothes?  Making baby toys?  Okay, those suggestions clearly came from my mother.  She did all that stuff.  I remember she was almost as excited as I was to write this list because she wanted me to have the opportunity to stay home with my kids the way she stayed home with me and my brother.  (See item titled “free dinners with Mom Mom” for proof of her commitment to this idea.)

Feed & seed the lawn?  Wash my own car?  Make gift baskets?  Cloth diapers??

*snort & guffaw*

At least I was openminded.  My goal was to save $2000 a month.  You can tell by the items titled “phone calls & internet after 7:00 pm” how long ago this list was written and what our budget must have looked like.  Good thing I was shopping at the warehouse place.  And I know I keep coming back to this, but when exactly would this plan have allowed me time to actually leave the kitchen to do freelance work or pay attention to anything other than preserving vegetables and making meatballs?

Soooo…

I’m still undecided– do I keep it or toss it?  Will I ever need it again?  Will I regret it if I end up adding to my family someday and I start to feel nostalgic about those new mommy brainstorms driven by wild hormonal changes and suddenly I realize I discarded a napkin list which was such an integral part of Alex’s infancy?

Is it completely disgusting to keep a Cracker Barrel napkin for 11 years?

… Wait.  Don’t answer that last one.  Just comment and tell me what you would do.

Sisters + Happiness = Hannahappiness?

autism home rescue 03081201A while back I joined a group in my area called “The Happiness Project.”  In one of their email newsletters, they referenced an article on sisters and happiness:  Why Sisterly Chats Make People Happier

I thought the article was really interesting, and it started me thinking about my little girl and her relationship with her brother and all the intricacies of their sibling situation.  The article was focused on adult relationships, but of course my mind kept going back to language and kid conversation and the difference between Hannie’s communication and Alex’s communication. 

Last week Aubrey and I visited Alex and took him out for a round of mini-golf.  On the car ride there, I babbled and commented and babbled on– as I usually do.  Alex sat quietly, watching the road (he is so big he can sit in the front seat now, believe it or not!) and listening.  At one point I paused and said:

“Moms talk a lot, don’t they?”

which elicited both a smile from Alex and a laugh of agreement from Aubrey in the backseat. 

autism home rescue 0308201203Moms do talk a lot.  Apparently, this starts when we’re kids.  And if we’re sisters, the talking– just the stream of everyday conversation– can be reassuring and helpful to our siblings because of more than just the content of the words.  The routine chatting, describing, talking about the weather, so to speak, in itself can create connection.  Maybe it’s not the words exactly, but the word-behind-the-words or the feeling of “sharing life together” we get when someone talks from their own perspective about what’s going on out there in the world.

I mean, c’mon– that’s the reason you read my blog, right?

autism home rescue 0308201202I like to think that Hannah’s little conversations, the sound of her voice, her questions, the way she says “I love you” will be important to her brother as they grow up not just because of what she says, but because the sisterly babble will remind Alex of the lifelong connection they’ll always share.

What do you think?

Alex-isms

wary of little sisterOkay, you all know my daughter Hannah can throw out the funniest one-liners.  She’s got the language, the attitude and the comic timing of a pro.  But she’s not the only kid in the family whose sophisticated sense of humor keeps me in stitches.  Alex’s humor is a bit harder to blog about– since most of the stuff that cracks him up is visual or slapstick (email me for the link to his YouTube channel if you like!)– but over the years there have been several memorable moments of perfectly-Alex funny which will always stick with me.

alex pumpkin2Alex loves to mix up words or find alternate meanings for words and phrases.  His receptive language, reading comprehension, spelling and writing abilities are right up there with super-smart typical kids.  Only difference is the challenge he has with expressive language and getting the words out.  For your reading pleasure, some of my favorite “Alex-isms” :

 *x*o*x*o*

alex grinMe (talking out loud writing a grocery list):  “… tomato sauce, diced tomatoes, kidney beans… ground meat, chicken… Alex, would you help me write the rest of this?  Write down what you want at the store.” 

Alex (taking pen & paper):  “ketchup, mustard… butter… mutter… Mommy!”  with a big winky grin.  Hands paper back with the rest of list printed and a smiley face drawn and labeled “mommy.”

*x*o*x*o*

At bedtime, Alex breaks into spontaneous giggles during cuddle time:  “Mommy, go to SHeep!” 

Me:  “Go to SHeep?  Silly boy, you mean go to—” 

Alex:  “Baaaaaaaah!”

*x*o*x*o*

charming alexAlex (huge charming grin, playing his version of Scrabble):  “Word!” 

Me (laughing):  “Dude, truck-azonkquilapsafo is *not* a word!”

 
*x*o*x*o*

alex's bowl and plate artAlex (age 3 in doctor’s office, singing to himself while Mom & Dad consult with the nurse):  “Bah-munty.  Da funty munty. .. Bah-munty munty…” 

Dad:  “Wait a minute, our son is singing ‘Brass Monkey’ by the Beastie Boys!” 

(and indeed he was– in perfect rhythm!)

*x*o*x*o*

alex goodbye pleaseMe (walking Alex to the door to let in a home program teacher he didn’t particularly like):  “Let’s open the door for our friends.” 

Alex’s welcome message:  “Goodbye, please.”

 
*x*o*x*o*

alex laundry chuteWhen Alex was a baby, I made up some ridiculous nicknames for him (as all new mommies do when they babble with their newborns).  One of my favorites was “Bunny Luv Pickle Pop” and I used to sing it to the tune of “Sugar Pie Honey Bunch” by the Temptations.  One of Alex’s first home program teachers finished a session of discrete trial training with him, spontaneously turned to Alex and in an animated voice said “Bunny Luv!!” to which 4 year old Alex responded without hesitation, “Pickle Pop!!”

*x*o*x*o*happy kiddos
 
 
 
 
 
 

The word behind the words: MOTORCYCLE

Me:  “Yo, dude.  What do you want to do today?”

Alex:  “Motorcycle.”  (tilts chair back, sits in relaxed too-cool-kid pose, looks at me with mock serious slightly emo expression)

Me:  “Motorcycle?  You wanna ride a motorcycle?”

Alex:  “Yes.”  (slight smile forming, but still staring me down trying to get across the seriousness of his request, seeing if I’ll take the bait.)

Me:  “Dude *you* have to have a driver’s license first to drive a motorcycle.”

Alex:  (smiling, walks up to me, clears his expression & gets serious again– looking me right in the eye, almost nose to nose)  “Mom.”

Me:  “Yes?”

Alex:  “Bring motorcycle.”

Me:  “Dude, I don’t have a motorcycle.”  (thinks a minute)  “But Aubrey actually has one…”

Alex:  “Mom.  Bring Aubrey’s motorcycle to drive for Alex.”

The WORD behind the words:

Me:  “Yo, dude.  What do you want to do today?”

Alex:  “Motorcycle.” 

translation:  “I wanna go out, I wanna *move* and go fast.  I know Mom would be with me on this one, I just have to get her attention.”

Me:  “Motorcycle?  You wanna ride a motorcycle?”

Alex:  “Yes.” 

translation:  “You know I’m really gonna try for this, don’t you?  I know it sounds extreme, but trust me, Mom, this is gonna rock!”

Me:  “Dude *you* have to have a driver’s license first to drive a motorcycle.”

Alex:  “Mom.”

translation:  “Do you see how serious I am?”

Me:  “Yes?”

Alex:  “Bring motorcycle.”

translation:  “Mom, seriously.  I know you can get us transportation.  I’m counting on you.”

Me:  “Dude, I don’t have a motorcycle… But Aubrey actually has one…”

Alex:  “Mom.  Bring Aubrey’s motorcycle to drive for Alex.”

translation:  “Aha!  Now we’re talking!  Bring it over, let’s make a break for it.  I am so down with that.”

 

Do you have the “WORD behind the words” for a kid you love? 

Please do comment & share!

:~) Quote for the Moment (~:

autismhomerescue11241101“From there to here, from here to there, funny things are everywhere!”

~ Dr. Suess

Click here for classic Hannah-isms!

(and stay tuned for even more!)

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