Not Your Average 6th Grade Creative Writing...

One evening last week my daughter peeked into my bedroom just before bed to share that she's been participating in a creative writing lesson each day and would like to share her latest installment.  As parents sometimes do, I agreed with a twinge of regret knowing this story could be quite lengthy and likely a little far-fetched.  Hence...creative.  My Lib...she takes creativity to a whole new level.

But as she began reading aloud, I realized this wasn't her typical fantasy-vampire-dragon-laden dreamscape.  No...this was much more.  Her words heightened all my senses and she instantly drew me in to the scene...the sounds, the colors, the textures.  While the story was short, it left her dad and me speechless.  Which doesn't happen often.  When dad actually stops playing Madden because he's so overcome with the quality of his 11 year old daughter's writing, you know it's good stuff.  I promise to post the first story she shared with us but today...today I must share her most recent tale. 

I assure you, I've already talked at length with her about her emotional state...that this is not in fact a reflection of her own personal feelings.  She's actually a quite healthy, social, involved kiddo who happens to have an amazing imagination:

I glared at myself in the mirror.  I was weak, useless.  I gave in too quickly.  And I was going to die for it.  It all started with that text, or that look, or even that word.  And that last touch, it was bone chilling.  But I'd never feel that touch again.  Not as long as a miracle happened.  My palms were shaky, but I looked down anyways.  Though my vision was blurred from tears, I could see the sink covered with the stain of my pain.  The red ghosts from my past seeping through the small gashes rather quickly.  I did this, but why?

I gripped the polished stone counter and forced myself to stand up, even when my body told me to lie down and accept what I've brought on myself.  But no, I chose to force my gaze through the mirror, looking at the pain I've felt for so long.  My eyes were tired and weary from many nights of no sleep.  My skin was many shades of blue and purple from the bruises I try to hide as my parents greet me from school.  My stomach was small and tight from telling myself to resist the taste, the feel of having something to fill me.  But my face, my face was the worst of all.  My cheeks were always flushed from the embarrassment I felt just being myself.  Being ashamed of by the only people that I had for comfort.  My lashes were clumped from the tears that streaked my face everyday because of the sadness and regret that started when I made one small mistake.  When no one forgave me.  And my smile hid the pain and sorrow I've had deep inside since the day it started. 

And my wrists, they felt it most.  After every thought, after every song, after everything, they were opened, and I watched myself in disgust.

Everything was a blur now.  If it was because of my tears or blood loss I wasn't sure.  But I couldn't see very well.  I hit the door with a thud and faintly heard my mom call my name.  I slumped down against the wall and began to cry.  I cried and cried waiting for the pain to be over.  I-I just...I should've gotten help...

A Lesson in Emotional Masonry

This morning as the kids were scrambling to get ready for school...

Me:  Hey kiddo, are you about ready to go?  You’re not going to be late for school again today. 

Lib:  Sure…just about.  Oh, and Mom…I just want to let you know so you can stop asking about Eric*.  We broke up.   But it’s okay because it was mutual.  I mean…it makes sense. 

Me:  Uh…are you okay?  Who initiated it? 

Lib:  He did.  Through a text message.  So…yeah.  I mean…that was crappy and stuff.  But…yeah.  I’m good.   Totally good.

I saw in her face behind her smile that she was not, in fact, good.   But dammit that 11 year old girl is me.  Through and through.  Her eyes began to water and turn a rosey shade of “this sucks so bad”.   But she continued to smile as I stuttered through what I thought she should hear. 

And what is that, exactly?  What do you say to your sweet girl who just got dumped by her very first boyfriend?

I’ll tell you what my instinct told me to say…

“Honey, boys are stupid…except your dad and brothers of course.” 

“You don’t need him…his loss.”

“He’s obviously too chicken to talk to you face to face…better you know what he’s made of now.”

“Asshole.”

Ah yes…all of the accoutrement that goes with the emotional masonry lesson I so want to teach my daughter.  “Here’s your first spade, and your first brick…build carefully.”  But I can’t.  God, I can’t build her up by teaching her how to harden herself.  How to build those walls tightly around her heart.   While I have made brick-laying an art-form, do I really want that for her? 

Has it always been satisfying for me in relationships past to smile, nod, agree and wish the boys well when they suggest we need time apart? 

Absofreakinlutely.

Even if I cried myself to oblivion in the private comfort of my bedroom, those boys never got the satisfaction of knowing they had the upper hand or were in complete control of the relationship.  In fact my reaction, or lack thereof, always seemed to shake them a bit.  I liked that.  And as they walked away I quickly slap down that next layer, or ten, of brick and mortar.

While I want to protect my daughter from hurt, I don’t want to prevent her from feeling love.  I mean real true deep love.  Can you ever really experience that if you’re only peering at the boy over the fortress you’ve built around you?  I realize she’s young…but dammit right now I’m laying the foundation for her.  How to navigate through relationships and break-ups.   I’m teaching her how to feel about it.  How to respond.  Do I want her upset?  Hell no.  But she has a right to feel emotional about it.  I can’t brush that off and expect her to be tough as steel.  She shouldn’t be.  I want her to let boys in.  Because they AREN’T all bad.  In fact some are quite wonderful.   And nurturing.  And careful.  And I want her to experience THAT.  She deserves to feel swept off of her feet.  And the boys she may encounter (waaaay down the road)…the good boys…deserve to be loved fully and freely by her. 

Yes she will encounter some d-bags-in-training along the way and have to experience a few heartaches in the meantime.  It’s my job to be her soft place to land.  And help her steady herself and focus on the good in her life.  Take the spade and brick from her hand.  And the next time she experiences this kind of hurt…my job…is to embrace her and say:

“I love you, my sweet girl.  It’s okay to cry.  And I’m so sorry.”

 

 

* Names have been changed to protect the innocent.

Italian Beef. You're Welcome.



So here I am...doing what I've said I should do for the last year.  Use my blog for evil rather than good...it's MUCH more fun this way!   If you're new to BlissDis, I typically write about my family and our journey through the world of Autism with my youngest child's diagnosis.  It ain't been easy, to say the least.  And while writing about those struggles (and SOMEtimes successes) can be extremely therapeutic, it sure is a breath of fresh air to write about something OTHER than feeling like I suck at mommy-hood. 

This cooking thing?  THIS I can do! 

Let me just say that I'm thrilled to kick this off with one of my favorite and simplest dishes to make.  It truly makes people wonder if you've slaved in the kitchen over a hot stove for HOURS.  Let's let 'em think that, okay?  It's just easier that way.

Before I get started let me be clear...I'm not a measurin' kind of girl.  In baking, yes...cooking, not so much.  It's aaaalll about taste, you guys.  And tastes vary from person to person.  So feel free to adjust any and all ingredients and portions to your liking. 

Also...don't count on me for technical terms when it comes to meat.  Or pretty much anything.  (Points down to pictures)  These colorful snapshots are here for a reason.  So pay attention.  Are we good?

Today we are making Italian Beef...which is one of those "throw it all in a crockpot in the morning and go on with your day" kinda meals.  Crack open that bottle of wine (because it's ALWAYS 5 o'clock somewhere), paint your toes, do some shopping, catch up on some Housewives, hide from your kids, or the old standard...go to work.  Which for me entails tossing on my fanciest yoga pants and walking 5 feet from my kitchen to my office.  I've got a really sophisticated job, you guys. 

Here is what I think you might need...but you know...make it your own.  I've made it without onions or the fresh garlic cloves and it still turned out aMAHzing, so...

A Crock Pot

4-6 lbs Beef Roast  (I've combined two before...because my family can EAT.)

48 oz  Beef Broth (NOT stock...broth.  B-R-O-T-H)

Jar of Sweet Cherry Peppers

Jar of Pepperoncini

Onion (1/2 - 1 whole)

Garlic (2-5 cloves)

Italian Seasoning

Garlic Powder

Extra Virgin Olive Oil

Worchesteshire Sauce

Salt

Black Pepper

6-8 White Bolillo Rolls

Any white sliced cheese (Provolone, Mozzarella, Havarti, Swiss)



You want to start with unwrapping the beef.  Take it out of the packaging and place on a large plate where you can salt and pepper all sides.  Let that sit and season while you throw the rest together in the pot.  (You're noticing my fancy plate aren't you.  Hang tight...there is more Corelle magic where that came from.  And don't go rushing your local Walmart for these.  I'm nearly positive they stopped making them 20 years ago.)

First to go in...the peppers.  THIS is what makes the beef ITALIAN.  Well that and the Italian seasoning.  But really...THIS.  Like I mentioned, you really can make this your own depending on how well you can handle spice.  You could be like The Domestic Goddess and prefer a 5 star spicey...OR you could be like the Gentleman and struggle with the spice level at Taco Bell.  It's a spectrum, you guys.  And we know spectrums. 
I digress. 

The peppers.  I typically go with one jar of sweet cherry peppers, juice and all.  Oh and lesson learned on my part...pluck the stems off these puppies BEFORE you cook.  I then add either one jar of pepperoncini (again, include the juice) or you could always go with the jar of pre-sliced banana peppers.  Whichever.

In a small separate bowl, combine a couple of hard shakes of Italian seasoning, about one solid shake of garlic powder and add olive oil until its a paste-y consistency.  The oil will help wake up the dried herbs a bit before adding it to the pot.  I know "shake" isn't a technical term...see warning above.  To be honest you can't add too much.  And if you find once it's done that it just isn't seasoned enough you can ALWAYS add more at the end.  In the meantime, let this sit a few minutes while you add the other ingredients.

Next come the onions.  My faves are Vidalia...they add an awesome sweetness to the beef.  They also add not-so-sweetness to your breath.  Your call.

Start by slicing off the ends then down the middle.  This makes it much easier to get that nasty super thin skin off...ya know...the stuff that if you try to peel off with your fingers, you end up with that little piece that just won't come off despite washing and you realize it's still there when you're getting ready for bed that night?  That. 

Once you get it peeled, turn each half flat side down and run the knife through both to get these nice narrow ribbons.  Again, you don't have to use an entire onion...or any onion at all.  That's how kick-ass this beef is. 

 Add your onion slices to the pot and sprinkle with salt and some cracked black pepper.  This gets the onions all excited and juicy while you move on to the love of my life.  Garlic. 

My favorite ingredient...and yet my least favorite to peel. The easiest way to do this is pop off a few cloves from the head...depending on how garlicky you prefer your beef.  With each clove, lay the flat side of you chopping knife on top and "punch" the top of the knife with your hand.  This cracks the peel making it MUCH easier to get off.  At this point you could either chop or dice the garlic...or if you're lazy like me, you just toss them in whole. 

I should note, you do not have to add fresh garlic since you've already added the garlic powder to the aforementioned Italian seasoning paste.  Not everyone is a huge fan.  But quite frankly, making Italian Beef without fresh garlic...well, that's just blasphemy. 

 

Now that you have your peppers, onions and garlic in the pot, it's time to add the beef broth.  I mentioned before to stick with broth, not stock.  Don't expect a technical answer as to why they are different but they are...and the broth tastes better, so.   Also...feel free to add a few dashes of Worcestershire sauce.  Say THAT three times fast.

Seriously.  Do it.

In all seriousness, Worcestershire is not required but I struggle to find a beef dish that doesn't taste better with a touch of this brown magic.

 Once all the liquid has been added, you can spoon in the Italian seasoning paste-ish concoction, followed by the beef.  Make sure the liquid juuuuust covers the meat.  If it doesn't, feel free to add water or hey, if you have any extra beef broth sitting in your fridge that ISN'T past expiration...just add that. 

Cover your crockpot and cook on low for 6-8 hours.  It rarely takes 8 hours to be done, but to be honest, I don't know if it's possible to overdo this meat...within reason.  If you can't get back to it for 9 or so hours, don't panic.  You'll probably be able to just shred it right there in the pot if it hasn't already fallen apart on it's own.  Otherwise, pull it out on a plate and shred with two forks.  Place the shreds back into the crockpot with the broth.  This is when the onions and peppers and seasonings can really work their magic.

While the shredded beef is gettin' all cozy with the juice of the Gods, it's time to get the bread ready. 

As I mentioned, I always go with the white bolillo rolls.  It's not an exact science, completely up to you.  BUT...there is an airy crispness that goes with these particular rolls that is out of this world.  They hold up to the au jus but melt in your mouth.  Slice them open and lay them on a baking sheet, open side up.  See that there foil?  Again with the laziness.  And I'm okay with that. 

I always add cheese to my sammies but it's not required.  Seems a travesty to serve such beefy deliciousness without the melty goodness, but that's just me.  I like to grab an assortment because my crew tends to have varying tastes.  You could go with provolone or mozzarella...I prefer to use both.  OR you could always go with swiss or Havarti.  I've not met a cheese I haven't liked. 

Scratch that.  There was that cheese at BlogHer.    Moving on...

Turn on your broiler and let it heat up.  Pop those rolls under the broiler just until they start to brown.  Please...and I do mean PLEASE keep an eye on this. With white bread in particular this can go really wrong, really fast.  No one wants burned buns.  No. One. 

Once they are browned add one whole slice of cheese...one should cover the bun, depending on size. 

No need to pop the cheese back under the broiler...the beef will melt it for you.  If you choose...and why wouldn't you (please don't disappoint me)...place another half or full slice on top of the beef.  THEN pop it briefly back under the broiler just until the cheese is melty.  Again...please watch closely as to not burn the edges of the bread.  Unless you like that sort of thing...and then, well...go on with your bad self.

If you're like me, you would be totally okay with an extra little kick to go with your sandwich.  This is where giardiniera comes in.  (Cue the opening of the heavens and singing angels.)  My favorite way to eat veggies.  If you've never bought it, you can typically find it by the jar right where you found the peppers...usually in the pickle/olive aisle of the grocery store.  It's a combo of cauliflower, carrots, pepperoncini, celery, and red peppers all with an amazing spicey, vinegary kick.  Either chop it up and use it as a sandwich topping...or just eat them whole as a side item.  Great either way.

Also...I would be remiss if I didn't advise that it is in fact against the law to eat this sandwich without a bowl of au jus nearby.  Just so ya know.

Grab a napkin or ten and eat up!

INGREDIENTS

A Crock Pot

4-6 lbs Beef Roast  (I've combined two before...because my family can EAT.)

48 oz  Beef Broth (NOT stock...broth.  B-R-O-T-H)

Jar of Sweet Cherry Peppers

Jar of Pepperoncini

Onion (1/2 - 1 whole)

Garlic (2-5 cloves)

Italian Seasoning

Garlic Powder

Extra Virgin Olive Oil

Worchesteshire Sauce

Salt

Black Pepper

6-8 White Bolillo Rolls

Any white sliced cheese (Provolone, Mozzarella, Havarti, Swiss)



Landing the Helicopter

According to Wikipedia:  A helicopter parent is a parent who pays extremely close attention to a child's or children's experiences and problems, particularly at educational institutions.

That’s not me. 

I mean…not really. 

Well, not all the time. 

Okay SOME times. 

Fine.

That is me…word for every mother-lovin’ word.

Not so much with the two older kids.  I’d say with them I’m a solid “Stage 3-Momma Bear” but I’ve never hit “Stage 4 Chopper” with them.  I don’t know that I’ve ever felt as though I’ve had to.  Fortunately for both of them they are very relatable, likable, social, athletic, healthy kids.  They talk to me and tell me more than I necessarily want to know on any given day.  I don’t have to interpret for anyone.  I don’t have to defend.  I don’t have to take note of every single aspect of their behavior.  I don’t have to preface every sports season with a coach 1-on-1.  I don’t have to keep copious notes of convos with teachers.  I don’t have a separate folder for each of them with anything and everything health-related. 

So why do I feel the need to be hyper-vigilant with Ben?  Some would say, and many often do, that it comes with the territory when parenting an ASD child.  But Ben is high functioning and if you saw him playing in his room you wouldn’t think he was any different than my other two kids. 

Usually. 

Am I waiting for the other shoe to drop?  Am I that fearful of the horror stories I hear from other parents that I hover too closely hoping to intercept?  Or am I pouring myself into his world, into protecting him, into advocating for him to avoid everything I feel like I’m failing at in life?  Is this really about Ben?  I would like to think it is.  The very thought of someone hurting Ben feels so imminent, and is enough to keep me up at night.  Most nights.   And maybe…just maybe…if I can win at keeping him safe and avoiding hurt then I am not a complete and utter failure.  In at least one thing.  And God, I need to know I’m not failing him. 

 

I’ve mentioned before that I struggle with depression and it comes and goes in waves.  And in recent months…there have been waves repeatedly leaping over my head, the undertow grabbing hold of me and teasing as it allows for a brief moment of sunlight at the surface before enveloping me again.  And again.  If I consume my days with researching health concerns and educational resources and therapies and (I could go on and on)…then I’m silencing that voice that tells me I’m not doing enough.  I’m not good enough.  I’m not living up to my potential.   That phrase epitomizes my life.  I’ve heard it for years.  It resonates to this day.

And in my efforts to NOT fail at this one thing…this one very important, delicate, vulnerable thing…my Ben…I’m isolating myself.  In my attempt to block my own inner voice, I’m also blocking out my friends, my husband and God forbid, my other two children.  What kind of friend, wife and mom does that? 

Me. 

It is taking serious effort on my part to pull myself from this tenacious undercurrent.  I’ve started attending Church again.  Oftentimes alone.  And I’m listening…listening like I’ve never listened before.  I leave with a take-away every single time.  And it’s helping. 

The Gentleman, of course, has been patient…I realize I am not an easy person to endure.  And somehow he is still here.  With a gentle redirection every now and then.  And thank God he knows when not to be so subtle.  With an invitation to reality and the events going on around me that I clearly am not acknowledging. 

But sometimes I need tangible evidence that it’s okay to give Ben some space and focus on something else.  I’m hard-headed that way.

This Spring Ben decided he wanted to play baseball.  As you can imagine my insides literally began crocheting themselves in intricate knots. 

He has ADHD…there is no way in HELL he’ll be able to withstand an entire inning in the outfield without touching the ball. 

He hates when people look at him.  How will he handle being on display while up to bat? 
           
What if he doesn’t make friends?

What if the coach isn’t nice to him?

What if nobody GETS him???  Because they won’t…I just know it.

The Gentleman listened.  And he rubbed my back.  And he told me that Ben would be fine. 

But what does he know?  I mean I WANT him to be fine.   But I just don’t know if baseball is his sport.

Then the season started.  And ya know what?  He played WELL.  The coach?  He was fantastic.  Did Ben meltdown every single time he struck out?  You bet he did.  In the beginning of the season I never sat far from the dugout because I knew that I would need to be nearby to help him through or at least prevent his teammates from intensifying said meltdowns.  As the season went on, though, the coaches started doing more of the comforting with Ben and I tried ever so hard to keep my butt in my seat.  (MOST of the time.)  Some of you know how hard that was.  SO DAMN HARD.  Excruciating. 

 

 

 

Before I knew it, that urge began to subside.  I was witnessing Ben gain a little more control over his behavior, his response to loss.  I watched the coaches learn Ben…and choose their battles.  When Ben struck out, which wasn’t often, he was allowed a turn to “rest” in the dugout while the rest of the team hit the outfield.  They were “getting” him.  Holy shit.  Getting him!  When the coach realized that Ben didn’t understand the concept of an RBI and was taking his inability to make it across home plate as a personal failure, he knelt down and eye to eye explained it to Ben.  When they realized he made it through a game with no meltdowns they rewarded him by having him lead the team in counting down in the huddle afterward.   By the end of the season it wasn’t just the coaches taking him in…it was the other parents too.  Every single time Ben was on deck to bat, the parents began cheering for him, clapping, screaming his name in encouragement.  And if he didn’t do as well as he wanted to, those same parents were still cheering him on the way back to the bench…as he dragged his bat in the dirt, head hanging low.  They knew that just because he didn’t chant in the field like the rest of the kids, it didn’t mean he wasn’t engaged in the game.  They knew that just because he didn’t cheer on his teammates from the dugout, it didn’t mean he didn’t care…Ben was always the first to run to a teammate when they got hurt.  They know he has heart.  Sometimes nothing but.

 

And in the second to last game of the season…as the coach had the boys huddled on the empty diamond congratulating them on a season well played, prepping them for the championship game ahead it was then that the coach recognized Ben in front of his team.  He announced that although they don’t typically give away a game ball, they would in fact be giving THAT game’s ball to Ben.  For hitting every time he batted.  For running four players in.  For not melting down.  For contributing to such a big win.  For being Ben.  And while attempting to take some pictures of the boys in their after-win glow, I swiftly slid my sunglasses back down over my eyes to hide the tears.  And they were a-streamin’, you guys. 

The Gentleman was right.  Dammit.  Ben was fine…and he had fun.  Hear me?  He HAD FUN.  Worth it in my book any damn day.  And no one was out to get him, or see him fail, or treat him unfairly, or make him feel inadequate.  Quite the opposite.  It renewed my belief that I don’t have to build him up by myself.  That I can have faith in people…in his peers…in the leaders in his life.  It’s not Ben and me against the world.  Sometimes I forget that. 

Getting through that season, watching him grow, watching myself let go, I realized that if I never let him experience these things, if I never feel the risk is worth the reward, then my boy will never ever feel complete accomplishment.  And he needs to feel that.  He needs to be proud of himself.  He needs to see the looks in our faces when he endures something we didn’t think he could withstand.
 

 

And I need to re-balance my energy.  I need to focus more on my husband, on ALL of my kids, on my friends.  I need to land the helicopter.  I can’t unrealistically say that the chopper is out of commission.  We don’t know what challenges are awaiting us ahead.  But for now, the motor is off.  And it’s time to just let Ben be Ben. 

In Honor of Mikaela Lynch

As I reflect over the events of the last week in particular my heart aches.  It hurts for poor sweet Mikaela Lynch, Owen Black, Drew Howell and other children who have recently wandered into danger.  It hurts for their families who will never ever be the same.  It hurts in fear of losing my own babies.  While they’re not technically babies anymore, to me they are still just as vulnerable and losing them would cripple me, to be sure. 


My youngest is on the Autism spectrum.  Long before we had a diagnosis we still knew that there was something a little different about Ben.  We never quite knew if he was listening to us.  We never knew if he could feel pain the way we do.  We never knew if he experienced fear.  He was our dare devil, to put it mildly.  But I can tell you for certain it never occurred to me that he would walk right out our door and take off on his own adventure. 

 
Until he did.

 
When he was about three years old he literally made my heart stop for the first time in my life and it’s never quite been the same since. We trusted he was just like our other children. That he had fear of the unknown and would stick close to home. I learned the hard way that he would forever be our child that we must watch like a hawk. One Sunday evening I was cooking dinner while my husband was working upstairs. Ben was in the living room completely in my line of vision and earshot, watching one of his favorite shows. Our front door was open with our screen door locked, allowing in the warm spring air.

 
Amidst the sounds of cooking and pans clanging, I must have completely missed the sound of the door unlocking and unlatching. After an unknown amount of time…may have been 5 minutes, maybe 15, I called up to the gentleman that dinner was ready and to have the kids come downstairs…including Ben who I assumed had joined his siblings to play.

 
He wasn’t upstairs. He wasn’t downstairs. He left.

 
My heart was in my throat as I threw open the front door instantly yelling his name as I choked back the panic. I called my neighbor to see if he had meandered next door…she was one of his favorite people. No luck but she quickly met us outside where we feverishly began to assign search areas.

 
The neighborhood was impossible….a ray of homes only 10 feet apart lining both sides of the street capped at both ends with retention ponds. Jesus. I went to the dark place and fast. I ran…shoeless and with my phone down the street to the pond closest to our house. My husband jumped in the car and drove around the neighborhood asking kids if they had seen any sign of him, recruiting small search parties of older children along the way. As I sprinted down the sidewalk, the homes on either side began to resemble an Alfred Hitchcock movie…the street lengthened and my legs began to feel like stone, growing heavier the closer I got to the pond. Flashes of our family on the 5 o’clock news, police canvassing the neighborhood, all flooded my head and finally brought the burning tears to my eyes. How did I lose this baby?? How could I be so careless?

 
As I reached the pond I saw a large rubber ball floating along the edge…and in that moment a switch was flipped. I looked down at my phone and knew it was time to call the police as I headed toward the water.

 
As I lifted the phone I heard a commotion. I looked back down toward my house and saw a cluster of children screaming undeterminable words, almost dancing in the middle of the street. As I focused between the scurry of neighborhood kids, I saw two chubby bare thighs and I knew. It was him. (God love him, he was in nothing but a thermal shirt, diaper and sandals. At least he put on his shoes.) I don’t know that my sadly out of shape legs could have carried me to him any faster.  I scooped him up as the kids in their excitement followed us all into our home. After thanking and hugging our helpers, the gentleman could see that I was on the verge of losing my shit and quickly sent them on their way…lest they see me “ugly” cry. Nobody wants that. I didn’t know whether to spank or squeeze him…or both. After I regained my composure I held him tight the rest of the night...and vowed from that point on we would provide an environment that would keep him safe and contained.

 
I generally don’t take him places where he could get lost in a crowd. Lord knows if he slipped out of my hands and ran, I would not likely be able to catch him.  Family gatherings, if not in a small enclosed area, never allowed me to sit and rest.  We were forever asking “where is Ben?” and do to this day when he’s not under my nose. 

 
Do I keep him under lock and key every moment?  No.
 

Do I avoid what could potentially be rewarding experiences for him or our family because I’m scared to death of losing him?  Yes. 

 
I don't necessarily regret avoiding Disney World or places like it.  I'm not sorry that we live in an area that doesn't allow for him to freely ride his bike.  I have a much shorter leash on Ben and have for four years because we now know he's a wanderer.  I am so damn thankful I got a second chance to be an overbearing, overprotective mom.  What I wouldn't do to give these parents who have lost the loves of their lives that chance too. 

 
Right now the parents are hurting.  And they’re questioning themselves.  And they’re taking criticism.  And GOD all they need right now is our love and our support.  It could be any damn one of us in their shoes right now.  Because we never know it can happen to us until it does.  It takes less than a minute for a child to walk out the door and out of sight.  Whether we want to believe it or not, we can’t all be on guard every damn minute.  We take bathroom breaks.  We cook meals.  We are human. 

 
Please…do three things after you read this:

 

(1)   Say a prayer, send positive juju, light a candle for these families that they find peace and support as they move through the following days, weeks, months, years.  You can leave thoughtful messages and notes of encouragement for Mikaela’s family at http://mlvillage.org/about-mikaela/.

(2)   Help thy neighbor.  Maybe not your actual neighbor…but your community, family, friends.  Know that after hearing of these stories those parents who are already on high alert for their own children who have a tendency to wander will be even more-so.  And they are tired.  Lend a hand.  Or two. 

(3)   Please check out and donate if you can, to the National Autism Association’s Big Red Safety Box Toolkit campaign.  They offer grants to families who cannot afford to purchase these kits on their own.

Hug your babies.  Tight.  

Loss and Light: The Story of My Maddex

I am so thankful to have an opportunity to share with you the story of a very dear friend of mine.  It is by no means an easy story to read.  She tells of the loss of her first-born child three years ago.  She has never put her story to ink and found it to be rather therapeutic.  I offered to share in the hopes that other moms who have been through this will know that the feelings following such a tragedy are normal, you are not alone...and most importantly, so my dear friend knows she too is not alone.  Here is her story...


THE BEGINNING. This is the story of my angel boy. It started when I met the man of my forever in November of 2007, he was a blonde haired, blue eyed baseball player from the country; his name was Brandon and he stole my heart. We moved in together about a year after meeting and he proposed to me. We didn’t have some magically perfect relationship; we struggled just like every other couple. Fought over money, who was going to let the dogs out, and whose turn it was to vacuum…the usual. After a year of being engaged we bought a house together. Now, you may think we did things a little backwards…but it was right for us. We had started planning a beach wedding in my hometown of Virginia Beach. My mom put a deposit down on a gorgeous beach house for everyone to stay at, things were falling into place. Brandon and I felt closer than we ever had; I can tell you now we weren’t our closest, not hardly. In August of 2009 I lost one my really good friends to Cancer…it was a battle Dana had been fighting for a very long time. It was hard for me to deal with, I cried for her often…I was trying to heal my broken heart from that tragedy when in December of 2009 our plans changed drastically. I was pregnant.

This was not planned…and this felt majorly backwards. We told his mom first, she was a lot more forgiving than my mother who was heart first into the beach wedding. We sat his mom down in our living room and told her I was pregnant…she cried…I cried…it was exactly how I imagined it to be. Then I had to tell my mom. I love my mom, as I have gotten older we have grown closer. She is from New York and boy, let me tell you…when she’s mad she is ALL New York. I was in the car with all of Brandon’s family for moral support when I made the call to my mom. It was so hard to make those words come out of my mouth…luckily I didn’t have to…moms know everything after all. I told her to sit down…”you are pregnant.” It stung to hear someone say it with such disappointment. She yelled, I cried…it was exactly how I imagined it, I broke her heart.

THE HIGH. Brandon’s mom planned a wedding in 2 weeks. It wasn’t a last minute court house trip. It was a BEAUTIFUL wedding at a clubhouse in Georgia where Brandon’s grandparents live. Most of Brandon’s family was able to make it, my side was pretty empty…but I was ok with that. My parents did come, and though I know it hurt my mom gravely, she put a smile on her face. After the wedding we came back home to VA and life went back to normal. We were excited, we were happy, everything was perfect. I was carrying OUR child. We made that baby out of love. I was starting to show, I had a tiny little bump where that baby was growing. We were closer than we had ever been, right?

REALITY’S SLAP IN THE FACE. If you have never been pregnant you probably only know the positives. You get pregnant, you might feel a little sick in the beginning, but you get this cute little bump…then you have a baby and you have a new love of your life. That’s how it always goes right? That’s what I thought. That’s what I EXPECTED. We had our second appointment for the little bean in my belly…I was about 12 weeks along. What should have been a routine check-up, measurements, pictures, movement, was one of the worst days of my life. The ultrasound tech did a great job of keeping a positive face…showing us our baby, little arms, little legs, a heartbeat….we were ecstatic. That was until we went to talk to the doctor. Instead of going into the room with the stirrups and the scale to chat he called us into his office…he made us sit down in the nice leather chairs…then he said “there is something wrong”. WHAT DO YOU MEAN THERE IS SOMETHING WRONG?? I saw the baby, I heard the heartbeat. NOTHING IS WRONG. We are so happy right now, we are closer than we have ever been…don’t you dare take that away from me.

THE ROLLER COASTER. Our baby had a cystic hygroma, it’s basically a cyst that runs from the top of the baby’s head to the back. I went from an extreme high to low. It could be a chromosomal disorder, we wished at that time it wasn’t…but looking back now that was the wrong wish to make. Brandon was in denial, he didn’t want to believe anything was wrong…as far as he was concerned we had a perfect little baby in my belly. That made it harder…I was fighting this low on my own. Specialist appointments were made for us, a heart sonogram for the baby, an amniocentesis…everything you shouldn’t have to do when you are pregnant in a perfect world. But this was now MY world.

They stuck a giant needle in my stomach and took out some of the fluid…I felt the needle enter the sac where the baby was…it felt like a balloon popped inside of me. I was at work when I got the call with the results. The baby’s chromosomes were fine…it was a chromosomally perfect baby boy. How could that be? That my baby with the cystic hygroma had no chromosome issues? Back to the high, I cried tears of joy…maybe the cyst was a fluke…the doctor said they could do surgery when the baby was born to remove it…he was going to be fine! Women stopped in the hallway at work to celebrate with me and cry tears of joy for me. It felt so good to be back to where I was when this started.

We had another doctor’s appointment shortly after that to do a heart sonogram, most babies with the cystic hygroma also have heart defects. When we went we had my mom and his mom with us…we have more support than we could ever show our gratitude for. There was our son’s heart on the big screen, beating for everyone to hear. He was alive…and he was WELL. His heart was perfect. No holes, beating as it should. He had a BIG, PERFECT heart. We felt blessed. Our baby was a fighter and he was strong; we were going to make it through this.

Our next appointment was at 20 weeks, they needed to measure all his bones and organs to make sure he was growing. Our appointments were at the specialist from this point on…that waiting room made me sick to my stomach, and I always felt bad for the women in there…something was wrong with their babies. They weren’t lucky like us…we had a perfectly healthy baby, this was just a precaution. I always separated myself from them…we were not the same, I refused to believe it. This ultrasound tech wasn’t as good at keeping a positive face. She called in another tech…and then the doctor. My heart started racing…what did she see that I didn’t? He has a cyst, we know that lady…calm down. “We are going to need you to stay longer, he’s not moving as much as a 20 week old fetus would.” HE’S NOT A FETUS, WOMAN, he’s my son. I stayed, by myself…Brandon had to work and this was supposed to be routine after all. He didn’t move anymore. He wasn’t swallowing the amniotic fluid. His stomach was empty. “He is paralyzed from the neck down.” Excuse me? PARALYZED? We can deal with that, he’s healthy, he has a big heart, his chromosomes are fine. He is fine. “Would you like to discuss terminating the pregnancy?” Back to the low. No ma’am…I WILL NOT terminate my son. I called my mom as I was leaving...I broke down. Mom, he’s not fine, I need you to come here please. And she did, as she always did when I needed her.

She drove 5 hours to visit for the weekend; to help around the house while I cried; to make things normal for me, because that’s how we get better. We chose a name, Maddex William Scott Grenier. Because Maddex wasn’t swallowing I had a lot more fluid in my belly than I was supposed to. I was HUGE. I couldn’t breathe and I was uncomfortable all the time. I was about 23 weeks along when I lost my plug, the first sign of labor. He couldn’t come yet, he wasn’t done growing…WHY WAS MY BODY DOING THIS TO ME?! The whole world is against my little family and now my body is against me too??? I felt like I was fighting every day, fighting for my son. Fighting to keep my sanity. April 16th was my friend Dana’s birthday. I celebrated her birthday with a broken heart...she wasn’t there for my wedding and she wouldn’t be there to meet my son. Life. Was. Not. Fair.
THE END. One day at the end of April, while I was at work I started to have sharp pains and I could not breathe. My doctor told me to go to the hospital, they would be expecting me. I went in got an IV they checked everything out. I was having contractions, but I was not dilated. They sent me home. I went to my doctor the next day and he wrote me a note to stay out of work. My body just couldn’t handle the stress. My mom took leave from work to come stay with me. I remember one day she was out planting vegetables in the garden. I went out to her and broke down. Why is this happening to me mom? What did I do to deserve it? She hugged me and we cried. We stood in my backyard surrounded by the mountains and cried.

About a week later in the middle of the night I started having contractions again. Called the hospital and they told me to come in. The doctor, who looked like Einstein, checked me and said I was 1 cm dilated. They decided to admit me. The nurse who came to put my IV in was clearly new. She stuck me 5 times in each arm before another nurse came and got the IV in. I was crying. I was in pain…it was 3 in the morning and I hadn’t slept yet. They gave me an antibiotic since I was so early, they hadn’t done the strep B test…a routine test in a normal pregnancy…not mine. The antibiotic burned so bad. More tears… still no sleep. When morning came around a doctor came in to talk to me. Not my doctor. She wants to talk about the options for delivery. I AM ONLY 25 WEEKS, WHY ARE WE DOING THIS NOW?! He has a cyst, he is not developed…his chances of survival are about 1%. “If you deliver vaginally he will probably not survive, if he does we can give you time with him until he passes or we can take him to the NICU and do everything to try and save him. The only option for a C-section is a classical C-section. If you do that he will probably survive birth, but there is no way to know if he will live. The classical C-section can also prevent you from any future pregnancy…it may not…but there is no way to know until it’s done. He is too small for a regular c-section; that is not an option.”

As I sat there in a fog trying to take it all in I realized they just told me I can either fight with all I have for my baby, risk never having another baby and probably losing him, or let nature take its course. This is the hardest decision I have ever had to make. I literally had my son’s life in my hands. I had to decide whether to fight for him or let him go. If I fight for him I risk putting him in pain, being connected to tubes and IVs and having surgeries, lots of surgeries and on medicine probably for the rest of his life. Or I hold him peacefully knowing he will die, assuming he is still alive when he is born. How can anyone make these kinds of decisions? No one should HAVE to make these kinds of decisions. I stopped having contractions so they released me.

I went home to think about what was going to happen when the actual time came. I had a doctor’s appointment scheduled two days later. Not with my doctor, he wasn’t available. I went in and the new doctor checked me. I was 3 cm dilated and 100% effaced…IT WAS TIME. He told me to go to the hospital. I went to Babies-R-US first. I needed a going home outfit for my baby, he was going home. I was determined. The store was remodeling…they had no preemie outfit. Was that sign? Was someone trying to prepare me for the inevitable? It didn’t phase me. I bought a pack of sports onesies that matched hats we had bought for him when we found out it was a boy. I called Brandon and told him to meet me at the hospital...and to pack a bag. It was time.

My mom was with me through all of this. She is the reason I made it to the hospital. She was and is my rock. Brandon showed up with a bag of goodies for me. My favorite snacks, my DS and games, my charger for my phone, and lots of magazines. He was making it normal for both of us. We were not afraid. Maddex was fine. He was going home with us. Friends stopped by to see us; Dana’s mom and sister came and brought me a blanket and stuffed animal and zebra for Maddex. It was all normal. My contractions started to get worse. So they gave me an epidural. It didn’t work. The contractions were so bad in my back the pain was radiating to my shoulders I could feel everything. I cried. I was so uncomfortable. I wanted relief. They put me on oxygen and made everyone leave the room. They wanted me to sleep. They turned off the heart monitor; they didn’t want me to know if he died before delivery.

In the early morning hours of May 6th 2010 I felt like I needed to push. The doctor came in and checked me. I was ready. Wait…no I wasn’t ready...maybe medically, but mentally I was not ready. They let more people in than usual. Both moms and Brandon were allowed. They told me to push. I cried. I yelled. I told them I wasn’t ready, HE WASN’T READY. It was not time. They told me to push again. My heart broke. I felt it shatter. I knew at that exact moment he died. I felt the life leave my body. The life I had been fighting for. The life I wanted so bad to be fine. That little life was gone.

They took him to the station with all the NICU staff standing around. SILENCE. The worse sound you want to hear in delivery room is nothing. I wanted so bad to hear his cry for life. But I didn’t. No one did. He was already gone. They brought his lifeless body to me and said they were sorry. They might have been. But I didn’t care. No one could be as sorry as I was in that moment. I didn’t fight hard enough for him. This was my fault, I did something wrong to make this happen. What if I had the c-section, he might still be alive. This was my lowest low. I held him all day. I put a diaper on him, I dressed him, I wrapped him in the blanket from Dana’s mom. He was mine. They brought us to a recovery room where, they took him from me to do some tests so I could shower and relax. Relax, really? Brandon’s mom contacted an organization called Now I Lay Me Down To Sleep. They send a photographer to the hospital to take pictures of “sleeping” babies. We had our family pictures done.

My broken family was recorded in photographs. In the afternoon they told me it was time to let him go. They brought up a little plastic coffin with a blanket in it. The hospital priest came to our room to bless my son before we laid him in his, now permanent, resting place. We all cried. He looked so peaceful when I put him in the coffin. Like a little angel taking a nap. That was the last time I saw my son. We had a small funeral; just family and close friends. I don’t even know who was there. My eyes were filled with tears the entire day. My aunt and cousin from NJ came down. They bought me something to wear to the funeral…I hadn’t even thought about that. The following months were filled with struggle. I was at my lowest point in my life. Brandon was trying to keep me alive. I felt dead. I wanted to be dead. I wanted to be where my baby was. Several attempts to take my own life always ended with Brandon fighting me. Dumping pills down the toilet. I hated him for it then, I love him for it more than ever now.

CLOSURE. I will never “get over it”. That’s not how this works. Your wounds heal, but they leave a scar. They had said while I was pregnant they thought he had multi-pterygium syndrome. When he was born they weren’t so sure. We still don’t have a diagnosis. I wish I knew what killed my baby boy, but I’m afraid I will never know. I did know the only way I would be able to close the door in this chapter was with another baby. In the year that followed I found comfort in the fact that Dana was with my son in heaven…and that we would try again for another baby. That was another struggle for me and Brandon. He didn’t want another one, he was scarred. I needed another one. I needed to hear that cry for life.

In July of 2011 I found out I was pregnant again. We were so beyond happy. That moment, that positive test, we were closer than we had ever been. We were brought together through the loss of life and creation of a new one. The door was hopefully closing on that hell our life had been. In February of 2012 at 12:03 AM the day after Valentine’s Day I heard the cry for life I had been dying to hear.

Aubrie Leone Grenier saved my life. She is my reason for living. I realize now the door to Maddex will never be closed. The chapter may be over but our story continues and he is still a part of it. I think about the what-ifs from time to time, but that doesn’t change anything. He is and always will be our angel.

 

The Talk

Decisions, decisions.

For two solid weeks I went back and forth…Autism Walk or baseball game?  Autism Walk?  Baseball game?  For the second year in a row we had another commitment the same day as our local county Autism Walk.  Dammit.

This year the conflict was a little league baseball game.  A game in which I knew Ben would shut down by the 3^rd inning.  A game in which Ben would need a firecracker lit beneath his rear to get him moving from outfield to dugout and back.  A game in which Ben would walk away feeling like a failure.  Again.  While I want Ben so badly to become an engaged member of that team, it wasn’t entirely difficult to make the executive decision the day before…we’re ALL doing the Autism walk.  The whole damn family. 

 

Lib and Timmy weren’t sold on the idea.  Of course they had no clue what to expect.  Another day of Ben being the center of attention, maybe?  Probably what they pictured.  But I needed them to understand how important it is that Ben sees that this entire family is on his side.  That we all support him.  Just as he has been cheering from the sidelines for years at Lib and Timmy’s basketball and football games.  It is their turn to cheer. 

We arrived fairly early, got registered and our t-shirts.  It was pretty chilly but Ben was thrilled to don his immediately.  The walk was scheduled at an elementary school…complete with a walking track and a nice big playground.  Perfect setting!   As more kids arrived the playground began to fill.  The gentleman and I stood to the side and watched many of the kids meander in and around the yard…many of them navigating the playground much like Ben.  Keeping to themselves.  Captivated each in their own world.  And for the first time….well…ever…Ben wasn’t alone in this.   And he loved it!  Before we knew it our NBA mascot, Boomer, arrived and Ben was elated.   Seeking pictures and a high five…smiles were abound.  And you know what…Timmy and Libby were actually having fun too!  (Brief glance to the heavens and a silent “thank you”.)

Just before the walk began, the kids decided it was time to grab a hot dog and sit down for a quick bite.  We found an open table next to a van broadcasting for a radio station.  While the kids were eating, the local DJ was interviewing one of the participants about her involvement with our county’s Autism Foundation.   And that’s when it happened…

“Mom…what’s Autism?”

NBC's 'Parenthood' - Max Braverman

Holy shit.  Immediately the gentleman and I locked eyes and we realized…we probably should have had this talk at the very least that MORNING.  Why hadn't we thought of this??  Of course we're taking him to a walk that has "AUTISM" blaring on a hundred different signs.  He CAN read.  I immediately flashed back to the episode of 'Parenthood' where Max stands up at the Autism Walk declaring his support for all of those kids out there with Autism...clearly not aware he was his family's participant of honor.   Did I really think Ben would assume we were walking to support a cause I randomly picked out of a hat?  I never claimed to be brilliant, folks.

Who’s gonna…what do I…how do I...how’s he gonna…crap.  

Dad took the first stab…”Okay Ben, Autism is when your brain is wired a little…well...you see…” I could see the look in Ben’s face and immediately interjected that there are not in fact any actual wires in your brain.  (I saw that one coming a mile away.)  After stumbling through a few attempted technical explanations, I took a turn.

“Ben…buddy, you know how a lot of times in school you get really frustrated because you feel like people don’t understand what you’re trying to do or say?”

Nod

“And you know how sometimes you get upset because you really want to take your time on your school work and get it done completely right instead of moving on to the next activity?”

Nod

“And you know how when people approach you and want to talk to you but you have a hard time answering with words and you don’t really look at them and…”

Holding up his chubby little hand to halt me… “Mommy.”

“What buddy?”

“I have Autism.”

It was all I could do to nod, get past the monstrous throat lump, squeak out a “yep…yep, buddy you do have Autism and that’s why we’re here” and pull the sunglasses back down over my eyes.  His very serious face was satisfied.  He didn’t ask anything else.  At that moment he didn’t need anything else.  As I attempted to continue our talk, he made it clear that he was done talking, done eating and ready to play again.  As he scurried away the gentleman and I exchanged glances…he knew where I was.  And I knew that my oversized shades were not hiding the tears streaming down my face.  We cleaned up our mess, followed the kids back to the playground, completed our walk, got some great pictures in the meantime and then headed home.  The gentleman and I determined we would revisit the conversation later…after taking some time to research how best to have such a talk with your ASD child. 

 

While I wasn’t prepared to have that discussion right then and there, I naturally thought of all the things I wanted to tell him after the fact.  But what I took away from that day…is that, as big and overwhelming as Autism feels to me…as frustrated as I get…as much as it is an everyday topic, a never-ending part of our world now…it is NOT everything to him.  Our talk didn’t make him cry.  Or scared.  It doesn’t stop him from playing, from laughing, from living his life.  It doesn’t keep him from fighting with his siblings or giggling about fart sounds with other kids in the carpool line.  He's not fretting about his IEP or what day he has speech therapy.  It doesn’t change HIM.  Those worries...they're mine.  And they should be.  And I'll take 'em. 

Ben can just be...Ben.