"taleS froM the trencheS

National Guard wife blogging about her adventures with three sons and the unexpected joys of Smith-Magenis Syndrome (SMS)
....um, yes. They are tears of joy. Really.








Our Squad

Our Squad

Wednesday, September 12, 2012

The Backpack


“Can we go camping?  Can we go camping?” 

This weekend, Garrett found his old Barney video, “A Camping We Will Go” from the first season of Barney.  It was episode 22 and originally aired on May 5, 1992.   Yes, I googled it. 
It’s the one where Tina (no relation) gets lost in the woods, hugs a tree and blows a whistle.  I’m sure you’re familiar with it.  No?  Well, come to my house because Garrett can act the whole show out for you.  He has watched it 10,000 times.

“WEEEE!  WEEEEE!” 

“What was that?” Charlie asked.

“Garrett did you find a whistle?”  I shouted out the window.  I was certain I had tossed the twenty five Yo Gabba Gabba whistles Aunt Patty had thoughtfully bought for Garrett’s birthday piñata.

“I hug a tree!” he shouted back to me.  “I go camping!”

“It’s your turn to sleep in the backyard,” Charlie reminded me.

“Sorry, it’s a school night.”

“Can we build a tent?” Garrett asked.

“No, but I will put the sleeping bag on your floor.  You can camp out in your room.”

“Can I build a campfire?”

“Not in the house, Garrett.” 
 
It continued all day Sunday.

“Do you have marshmallows?”

“No, Garrett.”

“Awww.   Do you have a flash light?”

“No, Garrett.”

“Awww.  Do  you have smores?”

“I already said no marshmallows and no campfire.”

“Awww.  Can I pack a bag?”

“That you can do!” 

Garrett grabbed his backpack and went to his room to pack his valuables.  I enjoyed the ten minute reprieve from Twenty Questions.

On Monday morning, I woke my younger two sons up for elementary school.  Autumn has finally arrived in Ohio and I grabbed my flannel PJ shirt to wear over my cotton nightgown.  The pink snowman shirt didn’t exactly match my yellow flower nightgown, but no one was going to see me.

“Shh!  Quiet!”  I kept nagging the boys.  If anything positive has come with SMS puberty, it is that Garrett is sleeping in late.    

“No, don’t flush the toilet!  You can hear the pipes upstairs.” There are 90 minutes between the elementary bus and Garrett’s middle school bus.

“No, don’t wash your hands!  Use some hand sanitizer.” I like to spend some of that time alone with my coffee mug.

“Here’s your backpack.  Hold onto the screen door.  Don’t let it slam behind you.”  Two down, one still in bed and the coffee was done brewing.

The boys came back inside.

“Did you miss the bus?”  Now I was going to have to wake up Garrett and drive them to school.

“No, it’s cold outside.  We need our jackets.”  Off came the backpacks.  I dug through the closet and found the hoodies.    There were coat hanger marks on the shoulders because the jackets had been hanging since May.  I pushed them down as if that was the equivalent of ironing them.

“There ya go.  Looks good!  And don’t forget to watch the screen door.”

Gone again.  Time for that coffee. Finally.

I turned around and saw my youngest son’s backpack next to the closet. 

Oh, no.  I was not driving to school.

I snatched it off the floor and raced outside.  The screen door slammed behind me.  I shouted my son’s name while waving the bag over my head.  The concrete felt like ice on my bare feet.  Good thing I had my pink flannel snowman shirt on. 

I shouted his name again just as he reached the bus steps.  He turned around and looked at me. 

There are no words to describe his expression.   He did not acknowledge me in any way.  No words, no smiles, no positive…or negative…movement of his head.  He just turned around and walked calmly up the steps. 

And I saw his Mario backpack on his shoulder.

I brought the bag in my hand down for a look-see. 

Spiderman. 

I was holding Garrett’s “camping backpack.”

I hate that purple dinosaur. 
 
 

Thursday, June 7, 2012

SMileS: First Visit to the Ocean


SMileS Friday: SMS Photos or videos that make us smile

I asked other SMS moms to share their favorite stories and photos for my Friday posts.  My friend, Heather, sent in these pictures of her son's first walk on the beach.




First Visit to the Ocean

Heather's son, Chris, was born with Smith-Magenis Syndrome and like many children with this diagnosis, he has sensory issues.  In the spring, Heather's family took their first vacation to the ocean.  When they got to the beach, Chris was uncomfortable walking barefoot on the sand.


So, Dad took Chris's hand and helped him to the water.
Chris tried to stay up on his tiptoes in an attempt to avoid the sand...a feat that I could not manage for very long!



Heather writes, "By the end of the day, he was a pro at the beach thing and even stopped in all of the sandcastle building madness to give me a cheese face!"






Standing in the sand and smiling! 

Way to go, Chris!



If you have a story you would like to share on an upcoming Friday blog, e-mail it to me at tmcgrevy@yahoo.com.  If you have photos to go along with the story, that's even better!

Thanks for sharing, Heather!

Friday, June 1, 2012

SMileS: First Day of Summer Vacation

SMileS Friday: SMS photos or videos that make us smile


First Day of Summer Vacation


Yesterday, all three of my boys were home from school at 3:30 in the afternoon...and officially on the start of summer break.

Approximately three hours later, this is what I found in the upstairs hallway:









"What happened?" I asked, softly and without added swear words.

"I need to wash my hands."  I heard a response behind me.

I turned around to find this sight:












"Why, yes," I replied, softly and without added swear words. "It does appear that you need to wash your hands, Mr. McAwesome."

There are 82 days until August 22nd, 2012.

Would you like  to guess what day that is?







Friday, May 25, 2012

SMileS: An Update on "Going Bananas"

Remember the banana story from last year?

I was so proud to have found a hiding spot for Garrett's fix.

If you missed it, click here for the story.


Today, I have an update on that post:





He found the bananas.









Thursday, May 24, 2012


Graduation Sunday: Touching moments with my son

There is something about the end of the school year that marks the passage of time more harshly than birthdays or New Year’s.   A cruel reminder of how much time has passed since I graduated and how few years are left before my boys are grown men. 

At last Sunday's service, we celebrated those who have graduated from high school or college.   They get called to the front of the church and asked to share their accomplishments and future plans.  Inevitably, my mind becomes a human calculator.  I can’t balance my checkbook, yet I can subtract years and compare dates at the speed of light.  (That would be 299, 792, 458 m / s.)


I recall standing there for my high school graduation; when the one college graduate’s mother was pregnant with her.   Then, I remember that those high school kids where younger than Garrett is now that summer I was their pregnant bible school teacher.  It hits me that in exactly ten years my youngest son will be 18 and graduating from high school.

I stop doing the math. 

I look down at my youngest with his Alfalfa-Hair sticking up at the crown of his head. We were the only McGrevys at church that Sunday and he had my undivided attention.  That kind of attention is rare when you have a special needs sibling and he seemed to be enjoying every minute of it. 

After small gifts were presented to the graduates, they remained standing while we sang to them.  That is a fairly new tradition and it must be excruciating.  But they made me feel old, so I had no sympathy. 

The hymn began:

I was there to hear your borning cry,


I'll be there when you are old.


I rejoiced the day you were baptized,


to see your life unfold.


“This song always makes me cry,” I whispered.  The boy’s eyes bulged and his face paled at the full weight of that statement.

She’s going to start bawling and Dad’s not here.

 “Do you want me to go get you a tissue?” he tried to leave the pew.

I grabbed his arm.

“Sit down.  I’m fine.”


I smiled, yet he seemed unconvinced.

If you find someone to share your time


and you join your hearts as one,


I'll be there to make your verses rhyme,


from dusk 'till rising sun.


He started to pat my arm.  Actually, it was very similar to the way he pets Pongo Elmo McGrevy, the youngest member of our family. But I thought it was sweet.

When the evening gently closes in,


and you shut your weary eyes,


I'll be there as I have always been,


with just one more surprise.


It is easier to hold your emotions back when two big blue eyes are staring you down, waiting for your head to explode.  For the first time in history, I did not cry during that hymn. 

The graduates returned to their seats.  I didn’t dare look at their mothers.

My son leaned over and whispered, “Remember when I was born?”

I put my arm around him and pulled him close.  I nodded, afraid to talk and ruin my tearless accomplishment.

He leaned over and whispered again, “Was I covered in blood?”

Gross.  I’m not sure I can last another ten years.




Here is a you-tube recording of the song. Go ahead and listen without crying. I dare ya!




Friday, April 27, 2012

SMileS: Getting Beyond the IQ number

Mental Retardation


That phrase was spelled out on my son's Smith-Magenis Syndrome diagnosis.  At the time, he was 18 months old and that term was very difficult for Charlie and me.

Fast forward two years and Garrett was building a complex system of towers.  A pile of toys, step stools, blankets and pieces of furniture greeted me around every corner.  We hid anything deemed "off limits."  Not your typical chocolate chip cookies kind of hiding.  We hid scotch tape, flour, band-aids and diaper cream.  We even hid bananas which continues to be an ongoing problem. (see here for the Banana story)

One morning, I put some clothes away.  When I returned downstairs, I found the baby gate knocked over and my empty clothes baskets stacked in the kitchen.  It did not take me long to connect the dots.

I walked into the living room and found Garrett standing in a pile of sandwich bags.  He must have heard me (because I was yelling) and he quickly ditched the evidence.







"Framing baby brother"
will never be on the IQ test.




But I can see the genius.








Almost a decade later, this scene makes me laugh.  The baby was still cruising and had yet to take those first steps.  I am certain he was not building towers and knocking over gates.  But, Garrett's decision was so "typical" of a brother.  And the nudge I needed to let words and phrases loosen their hold on me.


I would like to make "SMileS" our friday episodes here at "taleS froM the trencheS."  Do you have a picture or video of your child with special needs that makes you smile? Could you share the story behind it?


Send your photos and a short description (200-300 words) to my e-mail account tmcgrevy@yahoo.com.  If you have a link to video website, we can do that too! 


Can't wait to hear your stories!!




Thursday, April 19, 2012

Marriage Issues for Special Needs Parents

It was the same fight that my husband and I have had a million times.

It was not about money. We never fight about money.  Charlie and I like money and we wish we had more.  He does not have expensive "man hobbies" and I am not "high maintenance", as one can clearly see from that blurry mugshot in the right hand column.

For us, the most stressful part of our marriage is parenting a special needs child. Thankfully, we are in agreement on the basic concept:

    Pick your battles-

Let the little things go and focus on the big issues

    Divide and Conquer-

Make sure both partners get a break

    Carry on-

Allow the typical siblings a chance be a part of their own activities and interests 


So, since we truly agree on The War Plan, you would think that the battlefield would reflect that.

Wrong!


This is what a fight looks like in our marriage that is managing 

Smith-Magenis Syndrome.   

          (And I use that word "managing" loosely.)

Setting:  Inside a somewhat new mini-van.  It has handle-bar scars down each side and an invisible spot on the left panel ( Go here for that story).  There is always a faint odor of spoiled milk.

Cast: Charlie, me and our three sons.

It's a beautiful day and we are cruising down the road. 

Suddenly, without warning, Charlie turns on the radio. 

Garrett has a meltdown.

Me:  What are you doing?

I look at him as if he had lost his mind.  I reach down and turn off the radio.

Charlie:  I can't listen to the radio in my own van?

Me:  No.

Even though the radio is off, Garrett continues to cry from the third row.  Our two sons in the middle row have their headphones on and their eyes glued to hand-held video games.

Charlie:  My mistake.  I thought I was the one making the payments.

The temperature climbed at least ten degrees, so I reached over and hit the button on my window.

Garrett:  No!  NO!  Too windy!  TOO WINDY!!

Charlie has the nerve to look at me as if I just lost my mind.

Charlie: What are you doing?

He uses the driver's control button to move my window back up.   My repeated thumps on the passenger button cannot over-ride the driver's lock.

I make a mental note to research this annoying feature before our next auto purchase.

Charlie:  Why don't you just turn on the air conditioner?

Me:  Why don't I just sit here and roast?

I cross my arms and turn towards the window...the auto equivalent of storming out of a room.

We do not look at Garrett. We do not speak to Garrett.  Instead, we turn on each other like sworn enemies.

Garrett increases the volume of his cries. Mario and Luigi continue their go-kart race; oblivious to the war raging on around them.

Charlie starts to hum the theme to the old television show, "Good Times."  A joke he believes is still funny after eleven years.

I turn towards him and start to hum "War is Hell on the Homefront, too."

Charlie shakes his head and shrugs his shoulder.  Clearly, T.G. Sheppard humor is lost on a man that was raised in New England.

Finally, Garrett finds a Jack-in-the-box.

The sound of "Pop Goes the Weasel" fills the van.

Garrett starts to sing.

Garrett:  Round and Round.  Monkey, monkey, weasel.  POP!!!!

The only song that gets the Garrett Seal of Approval.

Charlie turns on the AC and reaches for my hand. We both claim that we were not really that mad.  And we wonder if we give Garrett too much "control" in the car.  Maybe we should "lay down the law?"  But how can Garrett gain control of himself in such a small confinement?

More SMS questions we don't have answers to, but we promise not turn on each other during the next go-round.

We even say it with a straight face.


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