Monday, April 30, 2012

Growing Up

Miss J is a Girl Scout and since September, she's been looking forward to the highlight of the year:  The Camp Out.  The entire troop was going and Miss J was so excited to try every camp offering and hang out with her friends.  Miss J could hardly wait to get home from school on Friday so she could pack for her big adventure.

We received an email from the troop leader the day before the trip:  A violent stomach bug had swept through the school and several of the girls in the troop were sick.  They would be staying in a cabin with no plumbing, so if our daughters did get sick while they were there, they'd be tossing cookies into a bedside bucket.  And lastly, the weather forecast was for cold and rain.  Activities like archery and rock climbing would be replaced with indoor cabin activities.

I read the email to Miss J and I watched the shadow of disappointment take over her face.  I reminded her of her busy week ahead:  Her tenth birthday, her grandparents coming to town to celebrate, her dance recital.  (And, what she does not know about, surprise tickets to see Cats.)  A bout with the stomach bug would erase those festivities.

Although I told Miss J the choice was hers, I secretly wished she would decide not to go.  I dangled a bit of bait in front of her and assured her that if she didn't go, we would fill our weekend with fun family activities.

She decided not to go. I have no doubt that she took my wishes into consideration when making her decision.

I began thinking of the fun things we could do together as a family.  I imagined bringing the camp experience out into our living room.  We could throw down our sleeping bags and light a fire.  We'd eat hot dogs and s'mores and play games.  She'd love it.

We spent the morning together as a family.  We visited our local police station's open house and, as promised to M,  headed to his favorite arcade.  We ate pizza and at Miss J's request, headed to her favorite bakery for a cupcake.  It was a beautiful day.


The afternoon came and I started to feel a bit "not right."  As the day wore on, "not right" turned into, "Yes-I-am-definitely-coming-down-with-something.."  Before long, I had set up camp in the bathroom.

The stomach bug hit and it hit hard. At one point I gave up trekking between my bedroom and the bathroom and just laid down in the bathroom.  I laid there, not caring that the floor needed to be swept, but simply grateful for how cool the bathroom tiles felt on my face.  At one point late in the evening, I had nearly convinced myself that this could not possibly be 'just a stomach bug' and that I must certainly be dying.    It was awful.

Any mother raising young children knows the cardinal rule:
A mother cannot get sick.  Ever.

Since having Miss J and M I have learned to trudge forward when I am feeling less-than-perfect.  You learn to make it through the day and still get it all done.  Mothers don't have time to be sick. There is too much to do.

But this bug had knocked me flat.  It had rendered me useless.  The To-Do list was whittled down to just two things:

1.  Lay on the bathroom floor.
2.  Try not to die.

Mr. A took total control of the house.  Miss J, without being asked, did too.  She stepped into my role.

She played with her brother and kept him quiet so I could rest.  She helped Mr. A with the vacuuming and dusting. She brought me crackers and hot tea sweetened with sugar.  She called to me through the closed bedroom door to ask if there was anything I needed.

Not once did she complain about missing her camp out.
Not once did she complain about not doing the fun family activities I had promised.
My girl just did what needed to be done at home and did it with grace and a great attitude.

She'll be ten in just a few days.  This weekend reminded me that, in so many ways, she is growing up.  And I could not be happier with the person she is growing up to be.

Thursday, April 26, 2012


This morning M and I were completing his morning routine, the one we do each morning, in preparation for school.  The steps and the dialogue of the morning vary little.  M was seated in the bathroom as I was putting the finishing touches on his hair.  He is quite particular for a seven year old boy.  He likes his hair gelled and spiked and sprayed.  He'll usually watch his reflection carefully in the mirror, inspecting my work as I go.  Sometimes he sits quietly and lets me work.  Other times he is a bossy pain in the butt and instructs me with every pass of the comb.

This morning M was more pensive and serious.  He stopped me during his coiffing and looked me straight in the eyes.  M doesn't often make direct eye contact and I was taken aback.
"Emence come." he told me in a somber voice.
I can usually understand everything M say, but I was lost on this. Ememce?  What was 'emence'?
"I didn't get that.  Say that again, bud"
"Emence.  Ememce come."
"Ememce?  Do you mean, 'M&M's?"  (Which happen to be one of M's favorite things.)
"No.  Emence.  Emence come get me and take me to house-pital."

M's brown eyes widened and began to brim with tears.
"Emence come get me.  Bring me to the house-pital.  Doctor weared blue goves."

M was referring to the day this past December when he had his first grand-mal seizure.  I had called 911 and M was taken to the hospital by ambulance.  Until now, he'd never spoken of it.   M rarely talks about any event that has happened in the past unless prompted to do so.  I was quite shocked that he'd brought it up and even more so to see the intense emotion it was bringing forth.

"Yes, M, the ambulance did come and it took you to the hospital.  That was a scary day, wasn't it?"
"Yes, Mama.  I so mitmenned."
M demonstrated by hugging his arms tight around his body and trembling.  He widened his eyes and made an exaggerated fearful face.
"Mitmenned" he said again.
M's voice softened and his eyes lowered to the floor.  He nodded and a single tear slipped over the edge of his eye and slid down his cheek.
"Yes, Mama.  I so really, really mitmenned."

At times I take for granted how much M understands and I am left to wonder how much more M has to tell me; what things he needs to say.

I wonder how much I miss.  I wonder how that makes him feel.

Sunday, April 22, 2012

Saturday Cheeseburgers.

One of M's greatest pleasures in life is eating a cheeseburger, or as he calls it, "a cheese-beeger."  There is no loyalty to any particular restaurant, he loves them all.  The cheesebeeger fascination began when M's pediatrician informed us that M was chronically anemic and advised we feed M more red meat.  M is a fruit and veggie kind of  kid and meat has never been his thing. The one exception being a cheeseburger.

Yesterday afternoon, Mr A was out running errands.  Miss J was spending the afternoon with her grandparents.  M and I had the afternoon to ourselves. 

"M, do you want to get a cheeseburger?"
:"Yes, Mama!"  he cried, "Let's go now!"
M put on his shoes, grabbed his coat and headed toward the car.

Taking M out for his cheeseburger is much more than indulging his love of grilled meat slathered with ketchup and draped in cheese. 

It is a lesson.  

It is a lesson that begins the moment we pull into the parking lot.

As we pull into the parking lot, I shut the car off and turn around to face M.  He is excited and is working to unbuckled the clasp of his seat belt.

"M, we're going inside now."
"Quiet mouth.Calm body. Be a good boy." he tells me, the look on his face quite serious.
"That's right bud. We have to behave in a restaurant. Let's go get your cheeseburger."

Lesson One:  Outline Behavioral Expectations.

I open the door and help M out of the car.  I remind him to take my hand and we look for cars.  As he usually does, M tires to wiggle his hand free from me. I remind M, "In a parking lot, we always look for cars, we walk and we hold hands." We cross the lot.  I feel the tension in M's body and can tell he'd rather run, but he remembers to walk.

Lesson Two:  Parking Lot Safety.

We go inside and M and I take M to the counter to order.  His face is beaming.
"Hi!  I want a cheesebeeger,please!"
I coach him a bit.  "M, what would you like to drink?"
"Apple juice!"
"M, tell the cashier.  Use a sentence, please."
"I want some apple juice, please."
"M, would you like some french fries?"
"French fries, please!"
I hand M the money and he proudly gives it to the cashier. 
"Thank you!"  M chirps to the cashier, just a bit too loud.
We step aside and wait for the food.

Lesson Three:  Ordering Food in a Restaurant.

The food is placed on the tray and M and I collect napkins (lots of napkins!) and ketchup (a must).  I ask M where he would like to sit.  Except for two other patrons, the restaurant is empty.  There is a sunny atrium and M motions that he would like to sit there.  He finds a table in the corner, surrounded by windows with the afternoon sun streaming in.  It gives M a view of the street and the drive thru lane.  Most certainly M has picked this spot on purpose so he can watch the cars zip by.

M settles into a chair and begins eating his food.  He is sitting still and is remembering to use his inside voice. He has placed his napkin in his lap and is remembering to say, "please" and, "thank you."

Lesson Four:  Proper Restaurant Etiquette

As we are enjoying our lunch, another family enters the restaurant.  It is a mother and father and their grown son. My eyes go to the young man and notice the awkward gait.  I hear him giving his order to the cashier behind the counter.  His speech is slow and deliberate and somewhat garbled.  I wonder if the cashier taking the order is having a difficult time understanding him.  I am not.  My ears, well trained to listen carefully to speech that is less than perfect, can easily make out what the young man is ordering.

Once their order is complete, the find their seats.  The restaurant is nearly empty, but they chose a table next to ours.  I am not surprised.  Frequently parents of children with special needs will seek each other out in public places.  We chose to be near each other.

M and the young man greet each other.  The young man asks M is he likes his cheeseburger.  He tells M that he does not like pickles.  I learn this young man does not particularly like sports and that pink is his favorite color.  He lifts a pant leg to show me a hot-pink leg brace, the same type of brace M once wore.

He is quick to tell me, "Colors are not for boys or girls.  Colors are for people."  He flashes me a gap-toothed smile.

M and his new friend continue to eat their lunch and engage in conversation.  Strangers looking on would certainly find their mannerisms awkward and their conversation strange.  They would be correct in their observations.  The picture I see is different. I see two people with extraordinary circumstances getting down to the very ordinary task of eating a cheeseburger and making small talk.

The parents of the young man and I talk.  Words find their way easily between us.  We don't know each other, but we know the other's story.  Undoubtedly through the years in raising our boys, we have walked the same path. Perhaps at different seasons in life, but still the same.

I feel myself relax.  I am sure they have noticed that M's fries have slipped off the waxed paper wrapper of his cheeseburger and have collected in his lap, just as I have noticed the spot of ketchup that has landed on their son's chin.  These details don't matter.  The detail that does is the momentary kinship we have all found in each other.  The pleasure of seeing our sons happy in the moment.

When lunch is over, I help M gather his trash and pile it onto his tray.  He carries it gingerly to the nearby trash can and he does his best to get it all inside.  I stoop down to pick up the flutter of napkins that have landed on the floor.

M returns to the table and smiles and says, "Goodbye!  Goodbye, new friend!  Goodbye!"

Lesson Five is for me:  Always Try To Make A New Friend Wherever You Go.

Tuesday, April 17, 2012

Hurt and Joy.

My pregnancy with Miss J was not an easy one.

I remember staring at the two pink lines on the eight pregnancy tests (yes, eight.) I had taken in disbelief.  I was pregnant?  I was pregnant!  That "Birds and Bees" stuff really works!  Wow!

I didn't feel pregnant though.  I felt...the same.  I mentioned this to a friend.
"I don't feel pregnant.  I wish I did, then I could believe it."

I should have shut my mouth.

Within days of seeing those two beautiful pink lines, I was face down and remained that way for most of the pregnancy.  My "What to Expect When You're Expecting"  book said I might experience waves of nausea in the morning or perhaps some evening queasiness.  That book lied.

I was sick.  I was sick in the morning.  Sick in the night.  Sick every hour in between. Nothing stayed down.  I spent a good portion of the first trimester in the hospital hooked up to an IV. At the start of my second trimester, I was down 13 pounds.  An ultrasound noted:  IUGR.  Intrauterine Growth Retardation.  Miss J was not growing as she should.

During a routine office visit, my doctor talked about the Quad Screen, offered to all pregnant women to detect for some of the more common genetic diseases.  I asked if the test was positive if it would change the course of my pregnancy.

"No, it won't change your pregnancy," she said, "But you would have the option to terminate if there is a problem."

The discussion Mr.A and I had was a brief one. It was quite simple: We declined the test.  If there was a problem, we'd deal with it.  We were not terminating this pregnancy.

Late in the pregnancy, Miss J stopped moving.  She was okay, but the amniotic fluid level was too low.  It was necessary to induce her. Thirty one hours later, a very loud and very pink Miss J entered our world; healthy and beautiful and perfect.

My pregnancy with M was much different.  I still glowed green for much of the pregnancy, but it wasn't nearly as bad as it was with Miss J.  I was healthy, M looked healthy.  All was well.

When it came time to do the Quad Screen, we declined it again, just as we had with Miss J.
Only this time, the paper I signed declining the test was lost and the test was run anyway.  At my next OB checkup I was read the results:  Normal.

Then M was born and everything was anything but normal.

Fast forward nine months later...

When Miss J was three and M was nine months old,  an old friend of ours called out of the blue and said he was in the area on business and we invited him to visit with us. It had been years since we'd seen each other and when our friend arrived, he hugged me warmly and kissed my cheek.  He turned to Mr. A and they jokingly teased about how the other had gotten fat and gray and bald before embracing with hearty slaps on the back.

Our friend was especially excited to share the news that his wife had just given birth to their third child, less than two weeks before.  Our friend was especially excited to welcome this child, a boy, after having two daughters.  He spoke proudly of his strong he was! big! healthy! amazing eater!....great sleeper!...never cries!

After dinner and after Miss J and M had gone to bed, we sat around our table swapping stories and reminiscing about times spent together years ago.  Conversation and wine were flowing.  We toasted our friend's new boy.  We toasted each other.  We joked and we laughed until we cried.

Later in the evening, our friend inquired about M.
"So" he asked, "What is wrong with M?"
"We aren't sure.  We've had a lot of genetic testing done and they still don't know."
"How is that possible?" he asked.  "When my wife was pregnant they did genetic testing too and said everything was fine.  Didn't you do the test when you were pregnant?"
Mr. A spoke, "We did. We declined the test, but they ran it anyway.  It was normal."

Our friend was surprised.
"You declined it?  Why would you do that?  Wouldn't you want to know?"

It was my turn to speak.
"The test the give you when you are pregnant rules out a few things out of thousands of possibilities.  I didn't feel the need to have the test because it didn't matter. If there was a problem, we'd just deal with it."

His eyes widened, "But you could have ended it if you knew."

My mouth went dry and felt like sand. I felt the hot burn of tears in my eyes.  Words caught in my throat and would not come.

 Mr. A spoke.
"M has a problem.  So what?  We love him and we're happy he's here."

Our friend was clearly surprised by Mr. A's words." I couldn't be happy with that.  I couldn't deal with that."

We sat, two friends on opposite sides of a deep line. The vibrant energy of the evening instantly gone.  We ended our evening and said our awkward goodbyes.

In the aftermath, I felt hurt.  And, I felt joy.

Hurt that our friend could not see the joy, the beauty, the love that our son brought to our lives; just as his son did to his. Hurt by his admission that he felt he could not love a child like ours. Hurt that he saw our child as a burden. Hurt that he felt our son should have been disposed of.

And the joy...
Joy because of M.  For M being exactly who he was.  Joy that he was mine.  Joy in my heart knowing that I never needed a test to tell me if my child would be perfect or not.  The pure joy of knowing that my child did not need to be fixed.

Saturday, April 14, 2012

Quiet mouth. Calm Body

Last week, on Easter Sunday, I decided I was going to attend church with my family. It seems like such an ordinary thing for a family to do on Easter Sunday, but for our family, it is a monumental decision.  For the most part, I accept the adjustments and accommodations that come with parenting a child with special needs. Sometimes though, I want to be like any 'typical' family.  Sometimes, if just twice a year, I would like to sit with my family in church.

I don't attend church with M as often as I would like as he has a very short attention span for sitting and listening.  He's pretty good for about ten minutes.  It happens sometime after the first hymn when M will usually announce with loud determination, "Done!  I go home now!  Goodbye, friends!"

This is the reason why I sit on the side in the pew closest to the door.  
It makes for a clean getaway.  
Regular church attenders have "their spot."  
This one is mine.

As with all areas of M's life, arrival time at church (and all the other you-must-sit-still-and-be-quiet venues) is meticulously orchestrated.  Knowing you have a limited amount of time that M will sit still and quiet, sitting down as close to the start time is key.  

This works for us most Sundays. 
But not on Easter Sunday when EVERYONE attends church.
When everyone arrives early to get a good seat. (Or rather, to get a seat.)
When someone else might sit in my seat.

We formulate our plan.  We will arrive early and Mr. A and Miss J will sit in 'our' spot.  I will walk M around the church until the moment service starts.  Perfect.

I would also pack my purse with 'reinforcements' I may need to get through the service:  Fruit snacks (also strategically planned as they offer a longer 'chew-time' resulting in the candy lasting longer.  They are also able to be chewed quietly) and a discretely hidden iPad (which, with volume off would buy us more time.).  Miss J's eyeballs roll at the sight of these reinforcements.  I know exactly what she is thinking but is not saying:  

That is so unfair.  You never would have let me eat candy and play games in church.  Never. You only let me draw on the bulletin.  The only reason you'll let me eat candy in church is because he gets to.

We arrived at church someone was in our seat.  It was a full thirty minutes before the start of the service and the sanctuary was filling fast. 

There was still room.
Far away from the door.
Close to the front.
Just a feet from the wind and string orchestra.

It would have to do.

Mr A and Miss J found seats.  M and I strolled the hallways of the church.  M was happy.  He smiled and greeted the congregation.  He watched the choir assembling outside the sanctuary, preparing for the processional hymn and wished them a happy Easter.  He looked out the vast windows at the blooming flowers in the garden and pointed them out to me.

I turned to him.
"M," I began.  "We are going to sit in church now.  They are going to sing and play beautiful music.  You will need to be very quiet so you can hear the music.  No talking, okay bud?"

"Quiet voice. Calm body."  He parroted back the phrase we'd told him countless times in his life.  

The music began to play and we took our seats.  Since we were not in our usual spot, a quick getaway was not possible.  I had to form another plan. I whispered to Mr. A,

"Let's just stay through the first hymn.  We can leave while the congregation is still singing."
With the congregation already standing and singing, slipping out  unnoticed would be easier.

The service began.  The pastors spoke.  M sat perfectly still and quiet.

The first hymn was sung.  M listened but remained still. He said nothing.

I whispered to Mr. A, 
"Maybe we can stay a bit longer.  We'll leave when they have the "Time With Children."  

The pastor invited the children to join him in the front of the sanctuary.  A blur of children rushed to the front to join him, Miss J included. He asks them what the best gift they have ever received was.  (Miss J declared her hamster was her best gift.)  The pastor finishes his time with the children and Miss J returns to her seat.

The service continued and M remained silent.  He inched closer to me and rested his head on my shoulder.  The choir sang again and the orchestra played. M watched and listened. 

M climbed up onto my lap and his 5 foot tall self curled into a tight ball, which M often does this in loud and crowded places.  M is so still and so quiet that I feel the tension leaving my own body and I relax. 

We remained in the service but  I am aware that my good fortune will not last forever.
Finally, when the pastor was about to deliver his sermon, I suggested to Mr. A that now would be a good time to slip out.

I am content and calm...and quite surprised that M sat so uncharacteristically still and quiet.  I am pleased by his stellar behavior in church, but it comes with suspicion.  As soon as we arrive at home, I stick a thermometer under M's tongue:  97.2.

No fever.

A pang of guilt sears through me for assuming that M's quiet behavior must mean the he is ill. With a fever-free M, we enjoy the rest of our Easter.

The following afternoon my phone rings.  The caller ID shows that it is M's school.  It is the nurse.
"I'm here with M.  He's very sleepy and he has a fever.  Do you think you could come and get him?"

I collect my coat and purse and drive to the school.

Saturday, April 7, 2012

Green Plastic Beads

Our family lives in a 1940's home that we purchased two years ago from the original owners.  The house is in desperate need of top to bottom updating giving  Mr. A and I enough home projects to last our lifetime.  One of  my favorite places, one that will remain unchanged, is the ten foot wall of windows in our kitchen that overlooks the backyard.  The window sill is a museum that displays the objects and treasures I adore most.

There is a geranium, planted by Miss J in preschool in a terracotta pot she lovingly painted herself.  (It is no small miracle that I have managed to keep this plant alive for many years now).  There is a god's eye, created from lengths of yard and sticks found in the backyard.  Miss J had been ill with a fever of 102 on the hot summer day she created it.  She'd sat in the shaded grass, carefully winding the yarn around the sticks.  Also in my window sill display is a small red piggy bank, hand painted by Miss J, and also a rock that caught her fancy.

There are more of her treasures that pepper the house:
The magnetic picture frame constructed of craft foam that holds a snapshot of our family sitting in front of a waterfall in New Hampshire.
The oatmeal container-turned-storage for loose change made one Father's Day for Mr. A.
A birdhouse decorated with pinecones, pebbles and twigs that lives in the window of our dining room.
A small balsa wood painted box that gently holds my jewelry on a bed of cotton balls.

Through the years I have proudly displayed sea glass collected from the beach and dandelions in make-shift vases of rinsed out mustard jars.  (And once a daffodil, picked without permission from a neighbor's yard.) An empty pickle jar held acorns, collected and polished, from the towering oak tree in our front yard.

I adore these gifts from Miss J.
Each tells a story.
Each is a memory.
Each is a snapshot of her at nine.

These gifts are one of my greatest joys of motherhood, tangible memories of Miss J's childhood.   My most treasured items, just as they were for my mother.

When I was a child, I went to a flea market and had my own money to spend.  The memory is somewhat clouded...I cannot recall why I was at the flea market or who I was with and why I was not with my mother that day.  I remember finding a napkin holder.  It was metal and painted with flat black paint.  On one side, printed in yellow and white paint, was a table grace.  A piece of masking tape affixed on the napkin holder read the price: 02.

I was amazed by this marvelous find! Certainly this was a gift my mother must have!  Being a napkin holder with a table grace it was both functional and meaningful!  And being a mere two cents my mother, with her New England thrift, would appreciate how little I had paid for such a magnificent piece.  I proudly paid my two pennies and could not wait to get home to give my mother this gift.

I gave her the two-cent napkin holder more than thirty-five years ago where it remains in her house to this day.  She never let it go;  never discarded it for something more modern, more suiting for her kitchen decor.  I have my painted pots and god's eye; she has her napkin holder...badges of motherhood displayed proudly in our homes.

I have treasured Miss J's gifts and, at times, I have felt a small ache in my heart wishing for M to one day run up to me with an acorn he found interesting or with a picture he drew. Admittedly, a piece of me has wished that he would understand how special this is for me, that he would "get it."  A piece of me has always wished to display M's  keepsakes on the window sill beside his sister's.

This morning M was watching television in our living room.  I was in the next room putting the final touches on Miss J and M's Easter baskets.  I heard Miss J stirring in her room and I called out to her.

"I'm finishing your Easter basket, J!  Don't come in here!"
"Okay!"  she called back and took a seat by M in front of the television.

From the corner of my eye I saw M run into his room.  He was back seconds later.
"Mama! Mama! I have a present for you!  Here Mama!"

I was stunned.  Did he understand that I was making a present for him and had he wanted to give something to me?

M came to me, holding a metallic green plastic necklace tightly in his hand.  He held them up and placed them around my neck.  He kissed my forehead.

"For you, Mama.  You are a good Mama."
He turned and went back to watching his cartoon.

It was from him, all on his own.
No one helped him
No one had guided him.
This was from M.

This was a gift from his heart.

Wednesday, April 4, 2012

Not The Same

When Miss J was in kindergarten, I found myself in an  accidental conversation on the school yard.  It was unusually warm that day and instead of rushing into our cars and hurrying home, parents lingered to talk as the children whipped down the slides and crossed the monkey bars until their hands were blistered.

M was just three years old at the time and was not yet walking.  I placed him on the edge of the playground  in the grass where he was quite content to watch the children play.  I was thankful for this because it gave me a few minutes to talk with the other moms.

The conversation taking place outside of the school was  light and lively.  The topic shifted to educating gifted children and the lack of funding for gifted education within the public school system.  One mom in particular felt quite strongly and shared her thoughts:

"This really bothers me, " she said, clearly annoyed.  "Why is so much money funneled into special education and not gifted education?  After all, these are the kids who will rule the world."

She continued, "Raising a gifted kid is just the same as raising a child with special needs."

I was stunned into silence.    I glanced my own child with special needs, sitting just feet away from us, unable to fully comprehend what I was hearing.  I felt deflated.  Did she feel that children like mine were not worth the expense of educating?

The part about gifted children "ruling the world" didn't bother me.
I didn't bother me because in actuality, it was true.

This mother's child may very well become the next Hawking, Jobs or Beethoven.  And while her child may someday be a Nobel laureate, mine will likely be the one bagging your groceries or greeting you with a warm hello at the local Walmart.

M's path is a different one.  Different, yet equally wonderful and certainly not a consolation prize.

M brings love, compassion, patience and understanding to those around him.  Precious gifts, usually not fully appreciated, but still gifts that fill a vital need in this world.

Even the statement that there should be more funding for gifted education didn't really bother me.  Not all children can fit into a cookie-cutter education, especially those who sit far to the left and the right of the bell curve.  All children should be able to receive an education that suits their needs and with a budget to to it, regardless of the community or zip code they happen to reside in.

The rub for me was the statement that "raising a gifted kid is just the same as raising a child with special needs."

I can tell you:  It is not the same.  Not in the very least.

Some parents of gifted children will argue that it is the same because they must fight and advocate for their gifted child, just as a parent of a special needs child would.  They may say that social interaction is more challenging for gifted child, just as it is for a child with special needs. They might even argue that raising a gifted child is more exhausting, more demanding , just as it would be with raising a special needs child.

There is partial truth in these parallels, but they are not the same.

For parents raising a child with special needs, the concerns are deeper and wider.

It is not the same...
I worry about the endless doctor and therapy appointments and the piles of medical bills.  I worry about health insurance and life insurance. I worry about seizures and kidney failure and blindness.  I worry about what adulthood will look like for M and who will watch over him once I have passed on.

It is not the same...
I worry that he will never learn to safely cross the street and that he will never learn to tie his own shoes or be able to work the buttons on his shirt. I worry that he will never be able to make himself a meal or that he will burn down the house trying.  I hope if he ever got lost he would be able to give his name and phone number and that whoever found him would be kind enough to help him find his way home.

It is not the same...
My hope for M isn't that he is accepted into a top ten university, but a top ten group home.  My hope isn't that one day he is blessed with a family of his own, but that he always have family (biological or not) around him.

It is not the same....
There is a certain sadness that occasionally washes over me, especially  when I see other little boys creating master designs with Legos or flying carefree down the street on their bikes or on skateboards....both requiring more skill and motor control than M has.  Over the years I have tempered my expectations and have come to the understanding that I will probably never hike with M to the bottom of the Grand Canyon and I will never stand in awe with him in the Louvre to admire beautiful works of art.  M may not write amazing essays, but the joy I feel when he writes his name is the same.  He may never do complex math but I still swell with pride when he counts out loud his beloved M&Ms.

I have my moment of sadness and my thoughts on what might have been.  I accept the loss that I feel at times and I mourn it.  And then I move on.

I has been many years since that conversation took place yet it remains fresh in my brain. At times I still feel the sting of her words.

If I could go back, I would tell her that raising M is....

Just as it is for any parent raising any child.

I would tell her what she will never know ...
That even still, it is not the same.  It is very far from being the same.

Monday, April 2, 2012

In The Saddle

This week my children were on Spring Break.  The majority of the break was spent close to home, enjoying local activities and trips to the park and out for ice cream.  Toward the end of the week, Mr. A and I did plan one overnight at a water park hotel located just over an hour from our home.We felt it would be a fun and enjoyable way to close out the week.

The hotel we selected has a stable on the property that offers trail rides for those aged seven and up, and pony rides for those six and younger.  Miss J has mentioned several times that she would live to try horseback riding and Mr. A and I figured this would be the perfect opportunity.  

A few days before our trip, I called the stable to make the reservation.  I spoke to the owner of the stable.
"How many in your party?" he asked.

"Four," I said, "but my husband and my nine year old daughter would like to do the trail ride.  I have a boy who is seven....I know your pony rides are for ages six and under, but could he possibly have a pony ride?  I should let you know that he is a five foot tall, eighty pound seven year old."

The owner asked, "Well, if he's seven, why not have him take a trail ride too?"
"He has special needs.  I don't think he would be able to ride a horse by himself."
"Ma'am" he began, "We've had a lot of different people come through here.  Maybe we can get your boy on a horse.  Come by thirty minutes early and let me meet him and I'll see what I can do."

As I hung up the phone, I was giddy with excitement at the possibility of M having a real trail ride.  Apparently, so was M.  At times I forget that he is listening to everything I say.  He'd heard the entire phone conversation I'd just had. 

"I ride a horse!"  he exclaimed.
"Yes buddy, maybe you will!"

For the rest of the day, M asked if it was time to ride the horse.  I tried to explain to him that it was still two days away.  It didn't matter.  Every few minutes he'd ask, "I go ride the horse now?"

The day finally arrived. We pulled up to the stable and we met the owner.  His face was weathered and tanned and friendly and he looked every bit the cowboy.  He took a look at M and asked some questions.  He felt that M would be able to ride.  He told us that two of his daughters would accompany us as guides.  If M couldn't handle the ride, one daughter would take M and I back to the stable and the other daughter would continue to guide the remaining riders.

As we waited along the fence to be matched to our horses, Miss J and M began bickering.  He yelled at her, she shoved him. M fell in mud.  I felt the stable owner watching and I felt the hot flush of embarrassment across my cheeks.  The stable owner came to me and said, 

"Enjoy every minute.  It goes by too fast.  My son and my daughter used to fight like cats and dogs.  His birthday is coming up on April 4th.  He died in August.  He was just twenty one.  Life is too short.  Enjoy it."  Then he left to help the rest of his crew ready the horses.

When it came time to ride, the owner told us that he would mount M last so that he would have less time to wait to ride.  M was introduced to his horse, Lucky, and we helped him on.  The front guide looped a rope between her horse and M's so that M wouldn't have to control Lucky with the reigns.  

Miss J, who had confessed to us that she was a bit nervous as we pulled up to the stable, mounted her horse with no assistance from the guides.  She sat tall in her saddle, looking like this was what she did every day of her life.  If she was feeling nervous, she certainly wasn't showing it.  She was grace and poise.  She was proud and elegant.

With all the riders mounted, we hit the trails. The guide was first, with M linked behind her.  Behind M was Miss J, then myself and Mr.A.  Behind Mr. A were the remaining eight riders.  The trail was beautiful and within the first few minutes, we encountered wild turkeys.  Our guide led us across a creek on a narrow wooden bridge and into the woods.  The terrain became more rugged.  The ground was uneven, muddy and rocky.  There were trees and thick underbrush.

My eyes were glued on M and I noticed him shifting in his saddle.  His body slowly began to list to the right and I feared he'd slide right off is horse.  

"Sit up, M!"  I shouted to the front of the line.
The guide paused and grabbed M by the butt and gave him a firm shove to upright him in the saddle.

We continued through the woods and within a few minutes, M was slipping to the side again.  Once again, the guide gave him another shove.

I could tell  M's body was fatigued.  He continued to list and his back began to slump. His body swayed
precariously on the back of the horse.  Low muscle tone and weak core muscles combined with
decreased balance and body awareness were making this harder on M than I had anticipated.  M is a big kid, but he looked so small and vulnerable on his horse.

Our horses were led up a small but steep hill.  M's body jilted backward. His feet flew upward. Somehow he managed to hold on and caught his body.

But for me, fear set in.  I pictured his body tumbling off the back of the horse and being trampled by the other horses.  I pictured him falling off the side and his head slamming into a rock.  I pictured M with unconscious and with broken bones being air lifted out of the woods.

My God, I was the worst mother on the planet.  Instead of protecting my child, I put him right into harm's way.  What was I thinking?  Whatever made me think my son could ride a horse by himself?  I should have known better.  I was overwhelmed with guilt.  I felt sick.

"I think he needs to get off!"  I yelled to the guide. My voice was thin and shrill and did not sound like my own.
At this point, I didn't care if I held up the ride for the other riders. I did not care if I created a scene.  If I had to, I would carry M out of the woods myself.  I felt myself on the verge of hysteria.

She pulled M's horse close to hers.  She righted M in his saddle yet again.
"He'll be okay.  Really. " she assured me.

The ride continued and M began to slump more.  The second guide pulled her horse along the other side of M.  M held out his hand to her and she grasped it.  For the remainder of our time on the trail, M rode with two pretty young women sandwiched on either side of him.  One woman held his horse, the other, his hand.  Together, they brought M safely back to the stable.

As our line of horses returned to the barn, the owner greeted us. He was beaming.  To me, he said,
"Look at his face, mama!  Look at your face! This is what it is all about!"

By now, M was off Lucky (whom I thanked for living up to her name) and safely on the ground and I could finally breathe.

The stable sold horseshoes and Miss J asked if she and M could have one.  I gave her a few bills and told her to buy two as I settled M in the car.  She returned with the two horseshoes and the money.  She told me the owner refused her money.  He told her that she and M were special kids and that he wouldn't take their money.  He told her to come back again for a ride any time.

I began to think about what the stable owner had said to me, 
"This is what is it all about."  
"Life is too short."  
"Enjoy every minute."

He is right.

As parents, of course we worry about our children.  We worry about their safety and their well being, especially as they grow older and spread their wings and leave the protection of our arms.

There is much I will never worry about with M....
I will never have to worry him getting behind the wheel of a car and driving.
I will never have to worry about him getting wasted at a frat party in college.
I will never have to worry about him traveling with his friends, without me, across Europe.

M will likely live out his life close to me, where I will serve as his protector and his guardian.

M deserved the experience of riding the horse solo.  He deserved it and I needed it.  I need to release him just a little bit and allow him this experience. I had to let him take a chance, take a risk and live a little. (How different my thinking became once he was off the horse on safely on the ground!)

To the ranch owner, thank you for giving us something we could experience as a whole family.  Thank you for giving my boy an amazing memory....and peace to the memory of yours.