Tuesday, January 31, 2012

Every morning.

Every morning when M wakes, he follows the same routine. 

Every morning, he wakes up and comes to find me.  He calls out, "Mama!  I'm up Mama!"  He greets me warmly and with such enthusiasm one might think he hasn't seen me in days. 

Every morning, after our greeting, M tells me he will go use the bathroom.  I respond in the same manner each time by telling him to go in the bathroom and that I will be there in just a minute.  

Every morning, he tells me he needs a drink. Over and over and over, he makes his request known.  "Drink, please, Mama.  I want orange juice please."    I remove two cups from the cabinet.  One for M's juice and one for my coffee.  "Mama needs coffee!" M will tell me.  Sometimes he will run to a drawer to bring me a spoon.

Every morning, he will carry his cup from the island in the kitchen to the table.  He will drink his juice and put his cup in the sink. As soon as the cup is in the sink, he will begin the request of,  "TV, please!  TV, please!  TV, please!"  He will now repeat this phrase several times. (Remember the movie 'Rainman' and "Ten minutes to Wapner"?  Enough said. )

M has used the bathroom, had a drink and has settled in for his morning date with the Disney channel. This is my cue to take a shower.  I swore I would never be one of those parents who uses a television to babysit their children.  I can openly admit that, yes, I am that parent who does have times when the TV is the babysitter.  When I want to shower, Disney and Nickelodeon come to my rescue. The thought of a power outage scares the hell out of me and makes my blood run cold. As far as the morning routine is concerned, a power outage can mean total system failure.

Once out of the shower, it is time to help M with his breakfast.  It is always the same:  O's and yogurt.  By 'O's' I mean Honey Nut Cheerios that have been cleverly mixed with the plain variety to reduce the sugar.  M will usually have one or two cups of yogurt each morning.  I've tried to change up the breakfast, but this is what he likes.  This is what he expects.  Knowing what to expect helps make his day run much more smoothly.

This morning I notice that there is one cup of yogurt left.  I pull up a mental schedule of today's agenda and try to determine when I will be able to make it to the store for more yogurt.  My day is jammed packed. I have to work.  M has a doctor's appointment and I have to be home in time for Miss J to get off the bus.  I have to make dinner and Miss J has Irish Dance tonight.  I decide I should have enough time between the doctor's appointment and getting Miss J off the bus. M will have to come with me, but it is still early enough in the day that he will not be too tired and should be able to manage the trip.  

Some readers may find it difficult to understand why one would rearrange their day  for something as simple as yogurt.  All I can say is that it is akin to discovering that you have one roll of toilet paper left in your house.  It is essential. You will make the time to get it.  Period.

M will eat his breakfast.  He is very good about clearing his place at the table and bringing his dishes to the sink.  At this point he will ask for television for just 'five more minutes'.  M still has no concept of time, but has learned this little trick of asking for 'five more minutes' from his sister. Asking is carefully executed, both children understanding that catching me in a busy moment is more likely to get them the time extension they are requesting.

Some days the request for five more minutes of television is granted.  (Read:  Five minutes for me to drink my coffee in peace.) On the days that M's request is denied, he will parrot back to me the words I have told him so many times:  "My bus is coming really soon."  He knows that it is time to finish preparing for school. He will go into his room and remove his pajamas and will bring them to the laundry pile.  With my assistance, he will wriggle into underwear, pants, a shirt and socks.  In that order. Always.  We will each take a turn at brushing his teeth.  M will put the toothbrush in his mouth and every time he will tell me, "that tastes really yucky."  He will ask me to fix his hair, complete with gel and hairspray.  

He will examine himself in the mirror and will nod with approval.  He will finally announce to his reflection, "I look good!"

As I check M's  backpack, he will put on his shoes by himself.  He will come to me for help with his coat.  Once zipped, he will look out the window for his bus.  When it rolls into our driveway, M will exclaim, "My bus is here!"  He is always happy to see the bus.

Together we will walk to the bus. Every morning he tells me the same thing, "Mama, I make new friends today!" (Most of M's repetitive behavior has me wanting to pull my hair out, but this phase I do truly enjoy.)

This is how it goes down at our house every morning.
Every morning.
Every morning.
Every morning.

Some may wonder what kind of parent plays into such a routine.  What kind of parent would rearrange her day in order to make sure her son has his beloved yogurt in the morning.  What kind of parent flips on the television at 7am without batting an eyelash.

I am that parent.  I am not perfect and neither is my parenting.  This is not a case of me caving in to the demands of a seven year old brat.  I suppose you could say that for M, this is neurological necessity.  M is neurologically wired in a different way.  M's world is black and white.  It is or it isn't.  It is 1's and 0's.  M gets through his days not through logic and reason, but by knowing what comes next.  M gets through his day by following his sequence of steps.

The morning routines make me weary and longing for change.  It find them monotonous.  Tedious.  I understand that he needs them.  I know they calm him. 

I have learned that the best way for me to have M in my world, is to learn to step into his.

Thursday, January 26, 2012

Gentle J

Miss J is a better person than I am.  I am the mother, the one whose job it is to guide and teach, yet these roles are sometimes reversed.

I anger quicker than I would like to admit and I can be slow to forgive and slower to forget.  I can hold on to anger, even though it eats at me. I know there is a certain roughness that exists along the edges of my heart.

Miss J is different.  She is kinder.  Warmer.  Gentler than I.  She is wise.  Loving. Strong, but soft. Quick to forgive.  I wish I could say these traits were learned from me or inherited by me, but I would be lying.  This is just how Miss J is.

When Miss J was in kindergarten, she went through a period where she struggled daily with another child who would pick up grass and wood chips and throw them on her head.  Each afternoon when I would pick her up, the story would be the same.  She and I were both growing weary of the situation.

I suggested she tell the teacher on recess duty, but Miss J, at the age of five, was determined to handle this situation on her own.  I told her, "The next time Miss Thing decides to throw grass on your head, you tell her that you've had enough and she needs to knock it off! You need to make her stop."  I let Miss J know that unless she said anything, this child would continue throwing the grass.

Miss J told me two things:
First, she said, "Mama, don't you think I have already asked her to stop?  Do you think I just say nothing and let her keep doing it?"  (Good point, kid.)  And then she said, "Mama, I think about this a lot.  Happy people don't do this.  Only people who are unhappy and angry do mean things. I think what she needs is a friend.  Instead of fighting with her, I will just ask her to be my friend."

I had to admit that my five year old had found a kinder, more peaceful resolution to this problem.

The next day when I picked Miss J up at school, I was anxious to hear how the day went.
"Well?" I asked once we were in the car.
"She did it again."
"What did you do?"
"I asked if she wanted to be friends.  She said no."

For weeks, we had the exact conversation.  For weeks this child would throw grass on Miss J's head and for weeks Miss J would extend an invitation for friendship. I began to wonder what the heck was up with this child (and her parents.) but  Miss J kept her calm.  She never angered. She never gave up on this child.

There is no moral, no magical happy ending to the story. The child did eventually stop throwing the grass but  the two never did become friends.

I did gain so much respect for Miss J, who knew at the age of five, the best approach in this situation was to try to diffuse it with kindness rather than to aggravate it with hostility or retaliation.

I wish I was more like Miss J.  Too often I let my pride and my ego stand in my own way.

Tuesday, January 24, 2012

A Cup of Milk

A few days ago, Miss J and I were sitting on the couch watching television together. M was off playing in his room.  When Miss J and I both heard a rustling in the kitchen, we abruptly looked up, unsure of what the noise was.

From our place on the couch, we peered into the kitchen.  It was M who was making the racket.  Neither Miss J or I spoke or moved.  We silently watched M.

M first opened an upper cabinet.
He took out a stack of plastic cups and removed one from the stack.
He placed the stack back in the cabinet and shut (rather, sort of slammed) the door.
He placed the cup on the counter and opened the refrigerator.
M proceeded to take out a nearly-full gallon sized container of milk.
He twisted off the cap, poured milk into the cup, slightly over-pouring and spilling onto the counter.
M haphazardly dabbed the spill with a towel.
He loosely replaced the cap and put the milk container into the refrigerator.
After drinking the milk, he put (threw) the cup into the sink and went back to his room to play.

Instead of offering up a step-by-step explanation of what M did, I could easily write, "Max poured himself a cup of milk today."  I could have, but it would not have done justice to what Miss J and I had just witnessed.

M had poured himself a cup of milk. Miss J and I watched, jaws to the floor, dumbfounded.

Some people may not immediately understand how significant this is.Parents and teachers and therapists of kids with special needs will immediately recognize how amazing this is.

A task as simple as pouring oneself a cup of milk requires the firing of thousands of neurons.  Like watching a beautiful dance, the brain and arms and legs and wrists and fingers must all work in sync together for the entire process to seamlessly come together.

The body must maintain balance as an arm reaches up high in order to pull open a cabinet door.  Two hands must work together to pull down a teetering stack of cups.  One arm must perform the task of opening a refrigerator door while the other arm performs a separate task of grasping a jug of milk.  Tiny muscles of the hands must grip the cap of the milk and twist it off.  Eyes and muscles and hands must be coordinated to pour milk into the cup.

The process requires cognition.  Motor planning.  Control.  Strength.  Balance.

These are the very things that M has been practicing since infancy.  Since his first therapy session at the age of four months.

Years ago, when we were given the bleak prediction that M might not walk or talk, we would hold up cards with pictures on them, hoping that perhaps M might point to a picture of what he wanted (pointing being another important developmental milestone.). Mr. A and I were overjoyed when at the age of two M could finally make the sign for "I want."  At three, M could tell us "Ma."  ...his word for milk.  Years passed and slowly M was adding steps to completing the sequence.  At age seven, he can now say, "I want milk, please.  Help me, Mama."

At nearly seven and a half years old, M was able, for the first time, to complete each step in the sequence independently.  Without asking for help.  Without wanting me nearby.  Without even having a need to tell me what he was doing.  Like any other thirsty boy his age, he got up and got himself a drink. His movements may have been slower and a bit messier than those of a typical child...but he did it.

He did it.  This was extraordinary.  And the irony is that M's extraordinary accomplishment of pouring a cup of milk by himself made him so plainly ordinary.  In our lives, when ordinary comes along, we catch it like a golden ring and hang on tight.

Saturday, January 21, 2012

Serediptiy: Part II


1. an aptitude for making desirable discoveries by accident.
2. good fortune; luck

And then, a blog was born.

A blog I wrote to share the story of M and his sister, Miss J.  Initially, I was only going to write during the weeks I was waiting for the results of M's genetic tests.  I was going to write for the sake of occupying my mind.  The results arrived and I kept writing.  I write now, not to occupy my mind, but because I have discovered I love it.

Let me say that again:  I love it.  I love to write.

Let me explain why this feels so important to me.  In the past seven years, since the birth of M, I have let go entirely of who I once was.  I let go of everything that made me who I was and I became Special Needs Mom.  (Because isn't that what a mother of a child with special needs does?  Devote herself 100% to the care of her child?)   Genetically speaking, I had messed up my son. I couldn't fix that, but I could spent the rest of my life proving that I can be a good mother.  The bad part about morphing into Special Needs Mom is that it became my only thing.  My defining thing.

The moment M was born, I instantly became the mother of a child with special needs.  I never had even one minute of 'normal' with my son.  Not one.  M exited my womb and took up residence in  the womb of the NICU.  He wasn't placed in my arms immediately after birth. There was no first picture of Mr A and I , holding our new baby, looking exhausted but overjoyed. There were no excited phone calls to friends and family members.  There were no happy visitors. M's birth was quiet, dark and somber. Such a stark contrast to the birth of Miss J, one that I can easily say was the happiest day of my life.

We were immediately thrown onto a rollercoaster of testing, hospitalizations, medical appointments, therapy sessions, IEPs.  It has been draining...emotionally, physically and financially. Seven years in there is no end in sight. We have not yet reached a point where we can exhale.  Not yet.

I threw myself into M's care.  He became my 24/7.   Endless hours in therapy.  Hours at home practicing what the therapists told us to practice.  Hours in the car driving to and from doctor's appointments.  Hours on the phone fighting with the insurance company.  Many, many hours.

And I still had Miss J.  She needed to be taken care of as well. I made sure I never missed a beat with her.  I made sure she had her dance lessons and music lessons.  I made sure she had her playdates and sleepovers.  I made sure I was present for every school event, music recital and dance performance.  I was her room mom at school and her Sunday School teacher at church. I did everything I could to fill in the gaps that I thought she might have felt her brother created.

For seven years, this was my life.  My only life. Until I found the essay.

The essay I wrote as a child that inspired me more than thirty years later.  Inspired.  I cannot remember the last time I felt inspired.

Nine Year Old Me knew it then:  If you have a family, you will still work and write. 

Nine Year Old Me understood that both were possible.  Forty year old me did not.  I felt that I had finally given myself permission to do something besides being Special Needs Mother.  That essay feels like a key.  A key to a door that might possibly open to a new life for myself.  (To even type the word myself still sounds so incredibly selfish to me)

An essay, assigned by my fourth grade teacher, folded and thrown into a box and shoved into the attic and saved by my mother for over thirty years made a 1,000 mile journey in my parent's car and ended up in my basement.  Read by me, sitting alone on the basement floor.  A happenstance chain of events that gave me something to call my own. Serendipity.

This quote from The Beatles "Blackbird" is for me:

Blackbird singing in the dead of night

Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise

Thursday, January 19, 2012

Serendipity: Part I


1. an aptitude for making desirable discoveries by accident.
2. good fortune; luck

My parents plan on moving soon and they are in the process of purging the things they don't need.  My mother announced to me that she would be bringing some stuff of mine that had been living in their attic for the past two decades.

They pulled into my driveway with several large boxes in the truck.  I sighed.  What was I going to do with all this stuff?  The boxes all contained my childhood momentos.  There were boxes of my books and toys.  There were a few of my favorite pieces of clothing.  My Girl Scout sash and handbook.  Trinkets and tchotchkes I had collected through the years and had once proudly displayed in my room.

One box was filled entirely with papers..  There were drawings scrawled in crayon from preschool. I found a stack of spelling tests and math worksheets and geography maps from grammar school  that had been printed on the school mimeograph machine and had left the paper covered with purple splotches. There were book reports and essays and report cards.  My mother had saved it all.

I sat alone on the floor of my basement for hours going through those papers.  There were a few I remembered, but most of them I had long since forgotten.

I came across an essay I had written when I was nine and in the fourth grade, the same age and grade Miss J is now.   The paper was yellowed and the ink faded.   It was an essay on what I wanted to be when I grew up.

I read the essay several times.  I read the words I wrote to myself over thirty years before.  An essay, written by a nine year old girl, folded tightly and long forgotten.  

I have to say, Nine Year Old Me was a smart girl.  She knew exactly what she wanted.  Nine Year Old Me had a plan.

Nine Year Old Me wrote that if she were single, she would become a doctor.  (And even went on to write that women have the same rights as men so yes, a female doctor was entirely possible.)  She also wrote that if she were married with children, she would work part time.  She would work in child care and she would be a writer.

Nine Year Old Me pretty much nailed it.

Becoming a doctor was a dream I held on to for a long while. I bought my first copy of Gray's Anatomy when I was eleven and loved checking medical encyclopedias out of the library.  I couldn't wait to dissect the frog in high school biology.  When it came time to think about college, I was unsure medicine was the path for me.  I ended up majoring in Health Education.  I did not become a doctor, but earned a degree that would put me in the health care industry.

After college I worked for several years for YMCAs in Program Development and as a Youth Program Director.  I was able to work with children and utilize my Health Education degree. After M was born, I left work.  I recently took on a part time job in a Montessori School.

The only thing I have not done that Nine Year Old Me said I would, was become a  writer.

I rediscovered that essay several months ago.  I keep it in my purse and still read it frequently.  It nagged at me that I had not written anything.  I'd always wanted to.  It had always interested me.  I just never did it.  I felt I owed it to Nine Year Old Me to meet that final goal. I didn't want to let her down.

I had no idea what I would write.   What would I say?  Would anyone want to read what I wrote?  What if I was a terrible writer and everyone hated what I wrote?  Worse, what if no one read what I wrote?

And when I asked myself this, my fearless Miss J came to mind.  My girl who will try anything without fear of failure. A line from an Allison Krauss song came to mind as well:  

"The next best thing to playing and winning is playing and losing."

I decided that I would write.  I would write for myself and for Nine Year Old Me.  I would write because it was something I had once enjoyed doing.  I made a promise to myself.

In the weeks that I was mulling over exactly what to write, I found myself playing the waiting game for M's latest round of genetic testing.  I had a full eight weeks to wait until the results were processed and I needed to do something, anything, to get the weight of the wait  off my mind.  I knew then that I would write about my life with M and Miss J.

And that is how this blog came to be. Inspired by a little girl's childhood essay. Born in the midst of waiting. 

Tomorrow: Serendipity Part II

Wednesday, January 18, 2012


Present Day

A friend recently told me she admired that I was always smiling and seemed to always have it together.  She said she wished she had a better attitude. I was flattered for the compliment, but that isn't the entire truth of who I am.  

Who I am and what I let people see can be two very different things.

Recently I made the trip with M to our Children's Hospital for his kidney check up.  The seemingly endless appointments always manage to put me on edge and this day was no exception.  M has had more than his fair share of medical appointments and never, not even once, has a doctor ever said to us, "Everything looks great!  Have a nice life!"  There always seems to be something.  It could be a big something or a small something, but there always is a "something." Always a need to return again.

Just prior to this kidney appointment, I had taken M to the eye doctor.  M is legally visually impaired. The doctor said the same thing that she does with each visit:  M vision has declined.  He needs new glasses.  Make another appointment for three months.

We had also just been to the neurologist and I had received the doctor's report in the mail. The final three words in the overview were:  Subtle Functional Deterioration.  Under that was a recommendation for further genetic testing and a follow up appointment with neurology once those results were in.

That genetics appointment was scheduled for the day after M's kidney appointment.

I felt overwhelmed as I drove to the Chilrdren's Hospital.  I felt angry.  I felt sad.  I felt robbed.  I hated that this was the only life M knew.  I hated that this had so much control over our entire family.  I wished that instead of appointments at the hospital that I was taking M and Miss J someplace fabulous.  I thought about the out-of -pocket expenses we'd paid; enough to fund a small country I'm sure.  My heart would sink each time Miss J would tell me about yet  another friend who had just returned from Disney World.  I know she would love to go.  She never asks if she can.  If we didn't have this to deal with, how many trips to Disney could we have taken?  At times I get mad that everything just seems so hard.

This is where my mind goes when I am on the road heading to an appointment with M in the backseat.  This is when I have my pity party and run the full emotional gamut.

We arrived at the nephrologist's office and checked in.  M took his seat in the waiting room.  A few moments later, a father arrived with his son. After checking in, they also came to sit in the waiting area.  The boy sat at a table flipping through an album filled with baseball cards.  M sat next to me playing Angry Birds on his iPad.  

The father and I made small talk.  I learned that M and the boy were the same age.  I learned that the boy was a "frequent flier" in nephrology.  The father explained that his boy had been quite ill, but was finally on the upswing.  He told me his son did not like school.

The boy let out a heavy sigh and informed his father he was bored.  The father nodded in M's direction and suggested he show M his baseball cards.  

I chimed in, "He loves to share his iPad if you'd like to play a game on it."

The boy looked at me, then at his father.  He looked angry.  He shot back, "I don't want to talk to him.  I don't want to play with him.  He's weird!"   Those words a direct hit to this mother's heart.

The father looked uncomfortable.  I did my best to hide shock and emotion.  I brushed it off.  Thankfully at that moment the nurse called our name.  I think the father was just as grateful as I was to be released from the grip of a most awkward situation.

After the appointment, when I was back in my car making my way home, I began to think again.  I first congratulated myself for holding it together in the waiting room. When the boy shouted those words, my first instinct was to twist his little head off.  My first instinct was to give both the child and his father a verbal beat down.  I wanted to respond that I would rather have a child who was weird than an evil little spawn.  Thankful in that moment I had some ability to reason left in me and kept my mouth shut.

I thought more about it. As I calmed, I was able to think clearly.  Logically.

This child was a young boy.  Perhaps he he hadn't interacted much with children who had special needs. Perhaps he had not yet been schooled in social graces.  Perhaps he didn't know how to articulate with words what he was feeling.  Perhaps he was confused by M, maybe even a bit scared.  Maybe he thought M was contagious.  

The father had mentioned frequent trips to the kidney doctor.  The little boy's swollen moon face told me he was likely on steroids.  Perhaps that accounted for the outburst.  

Perhaps this father felt as I often did.  Exhausted.  Scared.  Alone.  Overwhelmed.  Perhaps this father's mind also wandered into dark corners on the ride to the hospital.  Perhaps he was fighting a bigger fight than we were.

 Perhaps he and I had more in common than we might have though. Perhaps he and I were paddling the same boat, just in different streams.  

It makes me think of Mother Goose:

Row, row, row your boat,
Gently down the stream.
Merrily! Merrily! Merrily! Merrily!
Life is but a dream.

This child's rhyme makes me angry. Angry because I haven't been rowing gently down a stream.  I've been in a tiny boat  with an even  smaller paddle, in raging rapids, rowing furiously against the current.  Perhaps if this is 'but a dream' now would be a good time to wake up. 

These are the days that leave me feeling beat up and the smiles don't come easy.  These are the days when I wallow in the unfairness.  The days when nothing makes sense.   This is when I wonder if I fell apart, who would put me back together. This is when I hurt. 

This is the real me. Raw and honest.  This is me giving you a peek inside.  

I am borrowing a friend's favorite quote:  "Be kinder than necessary because everyone you meet is fighting some kind of battle."

Be Kind.  Be gentle.

Monday, January 16, 2012

All The World Is A Stage

All the world is a story
All the world is a stage
All the world is a canvas
All the world is a page
All the world is a someone
All the world is a dance
All the world is a moment
All the world is a chance

The first time Miss J ever sang for an audience was when she was two years old.  She sang "Away In A Manger" with her Sunday School class for the Christmas Program.  She wore a cream, red and black plaid silk dress with a black velvet bow.  She stood with her class, smiling brightly and singing with gusto.

When the song was done, the first words she spoke to me were, "When can I do that again?"  She was two years old when she learned that she loved the stage.  Performing is her passion.  Be it singing or dancing, she is always willing to put on a show.

From that dayforward, she couldn't wait until she turned three.  Turning three was a very important milestone, because that was the age she knew that she was old enough to begin official dance lessons.  She loved going to her class.  She loved her tiny pink ballet slippers and her tights and leotard.  She loved her shiny (and loud) black tap shoes that tied with a grosgrain ribbon.  She knew that in the spring, the session would end with a recital and she would be on the stage once again.

At home, the living room was her stage.  Our family, her audience.  She would belt out songs from "Annie" and choreographed her own dances.  Everywhere she went (and I do mean everywhere), she sang and she danced.

At the age of six, her dance focus shifted to Irish Step dance.   When she was eight, she joined a performance troop and came alive every time she took the stage.  As one of the younger members of the group, she had not yet learned all of the dances that were performed.  At one particularly large show, the group was one dancer short for a group dance.  Miss J had seen the dance performed, but had never been taught the dance.  At the last second, she was told to take the stage. There was no time for preparation. She had no fear, no anxiety.  Miss J beamed with pride that she had been asked to dance..  She made some mistakes and fumbled her way through parts of the dance, but the smile never left her face.  Anyone watching could see this is where she was meant to be.  She was in her element.

I recall one Sunday morning when Miss J woke up with a fever nearing 104 and complaining of the "worst stomach ache" she'd ever had.  I called the pediatrician who told me to give her Motrin and bring her right in.  Normally closed on Sundays, he opened the office for her.  By the time we had arrived, the Motrin had kicked in and she was feeling quite fine.  My 'sick' child, the one who the pediatrician had opened the office on a Sunday for, stood up and sang song after song for her doctor. Mortified, I apologized profusely for him having to come in.  He wasn't angry.  He sat there on that Sunday morning, grinning,  as she sang to him. Days later, a chest x-ray revealed that Miss J was indeed sick.  She had pneumonia.  The 'stomach ache' she felt was actually pain coming from the lower part of the lung.

Miss J will accept any offer to sing or dance.  She thrives on it.  I asked her once, "Miss J, do you ever get nervous on stage?  Do you ever worry that you might forget the steps or the words or that you might make a mistake?"

She looked at me as if I had lost my mind.
"Mama, " She began, "Why should I be nervous?  I'm a little kid!  Do you really think anyone is going to care if I mess up?"

This is what I love so much about her.  Her passion.  Her fearlessness.  How she embraces a new challenge.

I wish I could be more like her in that regard.  I think about how many dances I sat out because I was afraid to look foolish.  How many potential new experiences I turned away because I was afraid.  How many things I didn't even try because I thought I might mess up.

She makes me proud.  And the slightest bit envious. I wish I had it.  I hope she never, ever loses it.

Sunday, January 15, 2012

First Snowfall

Present Day.

Recently, we had our first significant snowfall. The fact that this happened in mid-January is pretty surprising, given the neck of the woods we live in.  The snow has laid a thick blanket down and everything is clean, quiet and beautiful.

I grew up in New England where snow fell frequently during the winter months.  Snow can fall as early as October and it isn't uncommon for it to still be on the ground in March when the crocuses are pushing their tiny heads up from the ground.  As a girl, I loved the snow.  If snow was on the ground, you could bet that I was in it.  I'd pile on the boots, the snowpants, the hat the mittens and I would stay outside for hours.  Sometimes I would build snowmen or make snow angels in my back yard.  Other times I would venture into the woods behind my house and build igloos and snow forts.  I would grab my sled and head for the local sledding hill.  (All without  a helmet or adult supervision...oh, the glory of growing up in the '70s!)  Daylight would slip away and I would continue my play in darkness until I heard my mother calling me from the backdoor of our home.  Only then would I head home.

As an adult, I still love the snow.  I still get excited when I hear the newscaster predict the inches and even more excited still when I see the first snowflakes beginning to drift down from the sky.  In the morning, I still rush to the window to peer outside, hoping to see a world of white.  Snow is still magical for me.

Like me, my children also love to be outside.  On any given day, Miss J and M would rather play outdoors than in.  Like me, they will stay out until I call them in. The only difference is that in today's age they are not exploring the neighborhood, but stay within the confines of their own backyard.

M has always loved the snow and being out in it, but he has always needed my assistance.  Cumbersome snowpants and heavy boots make it challenging for M to walk in the snow. Lack of balance and coordination means M falls frequently and the deepness of the snow makes it difficult for him to stand back up.  He'd make many attempts to walk and play and keep up with Miss J, but ultimately the clothing and the snow were too much for him..  Exhausted, he'd sit in the snow and and simply watch. Since he was not moving about, he would become cold quickly.  After a few minutes in the snow, I would take a shivering M inside.  I knew Miss J's heart would sink a bit as she would watch M and I head for the warmth of our house. I knew she wished that her brother and I could stay out there with her.

My heart would break as I would observe M sitting in the cold snow watching other children play. It was simply too much for him. He wanted to play but he couldn't.  These are the times when anger and sadness wash over me.  These are the times when I cannot make sense of a child, my child, any child  having to take on the observer's role in play.  It is painful.  Illogical.

This first snowfall brought us a small victory. This snowfall brought another first into our lives. This year, at age seven, M was able to walk in the snow.  By himself.  Unassisted.  He tired quickly, but he was still able to make tracks in the snow.  He played fetch with the dogs.  He delighted in smacking snow off the tree branches with a large stick.

This time, I was able to watch my children from the window as my mother did with me. They played until the sun began to slip away and I called them inside. As I helped them peel away wet clothes, I couldn't  help but smile.  On this day, I was able to reclaim a small piece of 'normal."

Monday, January 9, 2012

M in a nutshell.

Tomorrow I take M back to the neurologist for our follow up after the seizure.  The type of seizure M had was a  grand-mal, now referred to as a "tonic-clonic."  I have no idea who decided the names we use to refer to different types of seizures should be changed, but if anyone is interested in my two cents, I'd say go back to good ol'  "grand-mal."  The translation literally means, "big-bad" and that sums it up perfectly for me.

I am not a fan of neurology appointments (who is?) but I do like this doctor.  He talks to me and he also talks to M.  Far too many doctors discuss M, in front of M, as if he wasn't there.  I like that he puts down his pen, looks me in the eye and listens to what I have to say.  These two things make him worth his weight in salt.  I can tell you also what he lacks:  a big ego.

So off we shall go.  We will discuss the seizure.  The genetics test results.  The next steps we decide to take (or not to take.)

I have mentioned that M has no overall, unifying diagnosis.  We've ruled out several hundred things he does not have.  This is good, but there is a bit of frustration that comes with the unknown.

Some of you who read this blog know M personally.  Many of you do not.  I've been asked by people who do not know M to describe what he is like.  I can say this:

If you want to know, diagnostically speaking, I can tell you:

M is similar to a child with CP (cerebral palsy.)  His gait is awkward and fine and gross motor skills are lacking.  His walk sort of resembles a drunk monkey.  (I'm his mother so I can say that.)

M is also similar to a child with Down Syndrome.  Like many with the syndrome, M is friendly and affectionate.  He is sweet and warm.  M knows no strangers and everyone is a friend  It can be endearing but the potential risk for danger is concerning.  M is slower than a typical child at learning but has a very good memory and retains what he learns.  His IQ score is borderline for mental retardation, however the psychologist who tested him said she wasn't convinced that label was appropriate for M because he does have areas of functioning that are quite average.

M has several of Autistic tendencies.  He can be stubborn about how things are done and in what order.  He is repetitive with his speech and perseverative in his behaviors.  He likes routine and order.  On occasion he will have very loud and very public meltdowns.  He can be difficult to reason with.  He flaps his arms wildly when excited and lately he like to chirp like a bird.

On the personality side, M is a pretty techno-savvy kid.  He is a master on the ipad and with a Wii. The speed at which he can figure electronics out is astonishing.

He loves books and words.  He has an amazingly long attention span for being read to.

He loves the outdoors.  M loves the grass and sand and water and snow.  He will play outdoors for hours and often cries when I bring him inside.  There have been many mornings that M has been outside playing at 7am before his bus arrives in the driveway to take him to school.

M is polite.  He always says, "please," "thank you," "excuse me," and "I'm sorry."  M's speech is limited, but these four important phrases will carry him far in life.  He learned at a young age what many adults still have yet to master.

M is sweet and loving.  M is always happy to see you.  M wants to sit by you, talk to you, be with you.  M makes you feel appreciated.  Loved.  Needed.  Wanted.  That you matter.

M is brave. Through everything he has endured in his young life.  Through the countless appointments and procedures, he has been brave.  There is nothing comes easy for him and he has to work ten times harder than anyone else.  He struggles.  He falls. At times he is not feeling well. And still, he is brave.  He keeps getting up.  He keeps going.  With a big smile on his face.

Praise Every Morning.

Picture it:  A sunny Sunday morning in January 2012.  Miss J, M and I sing along with the radio as we prepare to leave for Sunday School.  We leave for church, their faces washed clean and hair neatly combed. They are the picture of poise and grace as we enter our house of worship. When we return later that morning, Miss J and I don our matching aprons and together we bake a cake, from scratch, as warm afternoon sunlight gently pours in through the kitchen window.

Do you believe me?  Want to know how it really went down?

I have the best intentions.  Really, I do.  I would love to be that perfect mother who always wears a gentle smile and never raises her voice.  Who has the perfect balance of love and discipline with her  perfectly behaved  and perfectly happy children living in the perfect house that never has a thing out of place and always smells of fresh baked bread.   

The day started well enough.  We were all up.  I had my plan, my schedule for the day. I had my morning shower and my coffee (both hot, just how I like it).  I smiled when my sleepy-eyed children so sweetly greeted me with morning hugs.  And then.....Miss J got sassy.  Milk was spilled on the counter.  Miss J's shoe was missing.  Again. (Surprising?  Not in the least.)  M did not want to get dressed.  He screamed.  He yelled.  He laid all 80 pounds of himself on the floor and went overcooked noodle on me, refusing to move.  While I was attempting to get M up off the floor and dressed, Miss J , ten minutes before we need to leave, began constructing an elaborate maze for her pet hamster out of cardboard tubes, tape and tacky glue.  Tacky glue is running down the side of the bottle and onto the rug. Her teeth and hair, both unbrushed.  Shoe, still missing.  M is still screaming.  No one has yet fed the dogs.

I have lost patience.  I am yelling.  Miss J, near tears,  is informing me that I am mean.  I tell her that I am running away and perhaps she'd like to find another mother who isn't mean.  (Not exactly my shining parenting moment but this is the honest me.) M is feeding the dogs apples.  I am not exactly sure where the hamster is.

We get in the car and the fighting between M and Miss J begins.  There is yelling.  There is pinching. There is crying.    I turn up the radio to drown out the noise.  I try to avoid looking into my rear view mirror because I can see arms and legs flailing. 

My children emerge from the minivan on this beautiful, sunny Sunday in January and they are red-faced and sweaty.  M's shoe is half off and Miss J's hair is a tangled mess.  They arrive for Sunday School and I have never been more happy to hand my children off to another adult. For the next 45 minutes I sit in silence and wait for them.  I find a book in the church library, "How to Raise Children Without Raising Your Voice."  I speed read through the book.

The part about making the cake from scratch?  That was real.  I had promised Miss J that we would make a pound cake.  We just needed to go to the grocery store to buy butter and a few other things.  The grocery store trip went about as well as out excursion to church.  Miss J was pushing the cart, not watching where she was going half the time and hitting the shelves.  M was no happy camper.  He announced, loudly, to the store that he wanted to check out.  In case anyone didn't hear, he made sure to repeat this over....and over....and over. 

We did bake the cake, but Miss J lost interest half way through and left.  

Somehow I got through the rest of the day and eventually threw my weary self into my own bed.

In the midst of the chaos today, I was listening to Cat Steven's song, "Morning Has Broken".  It is one of my favorites.  My favorite line is, "Praise with elation, praise every morning."  

I love it.  I tell myself I need to  hang a sign in my room so that the first thing I see when I begin my day is, "Praise with elation.  Praise every morning." 

Praise every morning.  Even the ones like yesterday.

Saturday, January 7, 2012

Where are you from?

I've been at this blog for a little over one month now. I've checked the stats and have learned that it has been read in nine different countries on four different continents.  I am curious to know where you are from.  I'd love if you would leave where you are reading from in the comment section.  If you'd be willing to share your location, I'd appreciate it!  Thanks! --S

Puff the Magic Dragon.

As a child of the 70's, one of my favorite songs was Peter, Paul and Mary's "Puff the Magic Dragon."  As a kid I imagined having my own dragon playmate. I wondered what "sealing wax" was, and when I found out, wondered why it was considered "fancy stuff."  In college, my friends and I would listen to the lyrics to try to decide if the song really was about smoking pot. Now as a mother, when I hear the song I think of my Miss J.   Sometimes I feel she is the Jackie Paper to my Puff.

Miss J is nine and she is straddled between the worlds of childhood and impending adolescence. I know that as the days pass she will spend less time in her childhood world.

She is is no particular rush to grow up and for that I am grateful.  She still will offer up public hugs and kisses.  Each morning she still shouts "I love you" as she boards the yellow school bus.  She will still lay on her bedroom floor and color for hours and still finds joy in finding the perfect "climbing" tree.  She and her friends will still play tag and hide-and-seek.  Her bed is still a menagerie of stuffed animals.  She loves boys....but only because they like to climb trees, play in the mud and, like her, are not afraid of bugs and worms.  The idea of  a boyfriend remains, thankfully, quite gross to her.

She is changing though.

She has an ipod and Raffi and Ralph's World have not made her playlist.  Instead she dances around her room with Katy Perry and broods with Adel.  Candy Land and Chutes and Ladders have been cleared away to make room for Scrabble and chess.  Her hair no longer smells of Johnson's baby shampoo after a shower, but instead of some overly scented and overly applied tween topical concoction from Bath and Body.  The flowing cotton Hanna Andresson dresses that used to hang in her closet have been replaced by more refined skirts and sweaters.  We have bid farewell to Curious George and Dr. Seuss.  

She wants to know at what age she can play at the park with her friends without me and when she can stay home alone.  She asks when I think she might need to wear a bra.  She likes to talk on the phone with her friends and asks me when I think she should have a cell phone. She's lost interest in the kiddie menu when we eat out and would rather try more dynamic, adventurous fare.

She has more on her mind, too.

She confides in me that as much as she loves M, she would love to have a sibling that she can really play with and have a conversation with.  She admits that she sometimes envies her friends...not for their possessions or the size of their homes, but because they don't have to live in a special needs world.  She tells me that she gets tired of explaining her brother to her peers and sometimes would rather not have friends over because they find her brother a bit odd.

"My friends just don't understand what it is like. They never will"

She tells me she gets tired of the stares when we are in public.  Tired of the things we cannot do as a family because of M..  Tired of M's appointments.  Tired of M's meltdowns.  Tired of M in general.

In these moments of confession, I say little.  The intense emotion pours out of her and do my best to be there to catch it. I do not try to convince her that yes, her friends do understand or no, it isn't so hard to live with M.  I don't give her the "but-he's-your-brother-and-you -have-to-love-him" speech.  I don't have to...I know she does.

Yesterday was a difficult day for Miss J.  M was getting on her nerves and she was telling him that he had wrecked her life.  I wondered if I just might see her head spin or see fire shoot from her eyes. (Did I forget to mention that among Miss J's changes are the pre-adolescent mood swings?)

The evening wore on and when it was bedtime she asked to blow up the air mattress so she could sleep in M's room.  She prepared her bed and read him a bed time story.

When I went in later that evening to check on them, I noticed the air mattress, which I had placed several feet from M's bed, had been shoved against M's bed.  Curled up in two little balls under a sea of blankets, they slept soundly, just inches apart.

Hours earlier I had been wishing for the day to end.  Now I was wishing for time to stand still.

Wednesday, January 4, 2012


One of our favorite places to go for a quick family getaway is Amish Country.  Not exactly a hub of excitement, but perfect for our family.  We effortlessly fall into the laid back country atmosphere.  We unwind.  We relax.  We recharge.

There is no urgency, no feeling that we have to see this and we must do that. We play. We sleep if we are tired.  We eat if we are hungry.  There is no need to watch a clock.  It is simplistic. Uneventful.  And given our usually eventful lives, uneventful is a welcomed change.

M loves the Amish and the Amish love M.  M's standard greeting for most people is, "Hello, friend!"  M's greeting is neither quiet nor shy.  M's greeting is never lukewarm.  M greets you with enthusiasm and genuine emotion and a smile big and bright.  He may even offer up a bear hug.  He is honestly happy to greet you.  Somehow, I think the Amish especially appreciate M. I think they understand that, like themselves, M is often misunderstood.  Judged.  Stared at.  Treated as a novelty.  And perhaps, from time to time, mistreated.

On a recent visit to Amish Country,  M and an Amish man became fast friends.  The Amish man owned a dairy farm and offered tours.  He invited M to be his guest at the farm.  Our family piled into his buggy and M and Miss J were invited to sit in the front seat with the Amish man.  As soon as we were seated, he handed the reigns to Miss J and told her to drive. Her face lit up.  "Really?" she asked.  He nodded.  She did graze the bumper of a parked car, but quickly got the feel for it and commanded the buggy with confidence.  When the reigns were handed to M, M giggled and took the buggy off road through a cornfield..  As the buggy bounced along the bumpy terrain, Mr A and I shot each other horrifed glances (And yes, a brief thought ran through my mind that I just might die, in a runaway Amish buggy, in a country cornfield.) , but M and the Amish man just laughed.
 Safely back on paved road, M, who was so happy, so filled with joy and so overcome by that moment, looked at the Amish man and said, "I'm so awesome!  You're awesome too!"
It was perfect. Extraordinary because we, for a moment, got to be perfectly ordinary.  All it was, all it took, was a buggy ride through the country.  A simple glue to hold us together.

 M's words have become sort of a mantra for us.  Periodically we will just look at one another and say, "I'm awesome! You're awesome too!"

Tuesday, January 3, 2012

Test Results.

When I was little, I hated having my hair brushed.   My hair was prone to knots and tangles, and like most kids, getting my hair brushed was not high on my list of childhood priorities. Like most mothers, mine wouldn't let me out of the house until the knots were removed and the tangles smoothed.  I'd fuss. I'd fidget.  I'd wiggle.  I'd complain.  No matter how slow or how gentle she went, I'd cry that she was brushing too hard and that I was sure she was pulling chunks of hair out with each pass of the brush. I remember the hairbrush she'd use.  She'd bought it from her cousin, an Avon lady.  It was seafoam green with daisies and it had white nylon bristles.

One day when I was five, we were standing in my room in front of the mirror and she attempted to de-knot my hair.  As part of the daily ritual, I  fussed and complained.  Trying to avoid my mother's brush strokes, I twisted and turned and squirmed.  Finally, my mother had enough.  She moved to swat my backside with the brush, but in one quick movement, I had attempted to protect my butt with my hand.  Unintentionally, the brush came down on the bony part of my wrist. A red mark instantly appeared.

I howled.  Not because of pain, but in response to my mother.  I can still recall the look on her face.  Fear.  Regret.  Guilt.  She cried.  She apologized repeatedly.  The hit on the wrist didn't scare me.  Her intense reaction did.  (I think I got the Dorothy Hamill haircut shortly after that, thus ending the ongoing hair battle.)

I was confused by her reaction.  I didn't understand it.  I was fine. Why was she so upset?  I wasn't able to fully understand, fully appreciate her reaction until I became a mother myself.

Now I understand.  As a mother, my first and foremost responsibility is to protect my children from all harm.  It is done without question, without thought.  It is biological instinct.

I started writing this blog as a way to take my mind off waiting for the latest results of M's genetic tests.  I am downright lousy at waiting.  I am impatient by nature.  Writing gave me an outlet, a way to organize my  thoughts and pass the time.  The blog was born.

M was brought back to genetics at the recommendation of his neurologist.  His latest neurology report read:  "Subtle functional deterioration."  The words he spoke to me, "I'd like you to take M back to genetics.  We need to rule out diseases causing degeneration of the cerebellum."

And back to genetics we went.  Blood was drawn and the eight week waiting period for results began.

The geneticist named two syndromes he was going to test for.  The first syndrome wasn't all that bad.

The second made my blood run cold.  Not because it was degenerative (it isn't.).  Not because it was the worst possible scenario for M (it wasn't.)...it was because of what the geneticist said:  "It is the most common cause of inherited mental retardation and is passed through maternal pedigree."

Simply put:  If M had this syndrome, it wasn't because of some random coming together of Mr. A's genes and mine.  It wasn't a random faulty chromosome.

If M had this syndrome, the only cause, was me. Let that marinate a bit.

It would be my fault alone.  My child's intellectual disability, the medical issues, his uncertain future:  All because of me.

And worse still, the chances would be good that Miss J would also carry the defective gene, inherited from me.  Though she was unaffected, she could pass this syndrome on to her children.

I feared that I had screwed them both.  I feared that Mr. A would look at M and would feel hatred for me.  I feared what my in-laws might say about my inability to produce a perfect grandson.   Would Miss J hate me for ruining her chances at having a healthy biological child, if that was what she wanted later in life?

I had no test results yet the guilt was overwhelming.  So was the sadness.  The grief.  The ache.  The numbing pain.

I kept thinking back to the hairbrush incident, back tot he day when my mother feared she had hurt me.  The day that the red mark left on my body hurt her more than it hurt me.  I understood.  Totally.  Completely.  Had I hurt my children?  Had my DNA left a bad mark on them?  The outcome is different...a red welt versus a lifetime disability, but the maternal feelings are the same.

A few days ago, my cell phone rang as I was holding a bowl for M to vomit into.  I looked at the caller ID. It was the geneticist.  Impatient me had waited eight weeks for the answer and now I was catching a waterfall of vomit and couldn't take the call.

Later that day I returned the call. I did my best to sound cool and collected. The results of the tests were negative.  All of them. He did not have either syndrome. I made the genetic counselor repeat them to me.  I made her read the results over the phone.  I made her explain it. She probably thought I was a nut, but I didn't care.  I needed to hear it.  I needed to fully comprehend the results.  I needed to know there was no possibility of mistake.

After I got off the phone, I sat for a few minutes in silence.  I let it sink in.  I let the news process in my brain.  I allowed the weight to lift.

Two syndromes have been ruled out.  For that I am grateful. I still wonder though...what does M have?  It is never simple.  I still worry.  I worry we will never find out what M has.  I worry that we will.  I worry that maybe I will not be strong enough to hear the truth. As much as I hate to admit it, I worry.