Thursday, May 31, 2012

R.I.P, Mr. Fishy

M loves fish.

Our local Walmart used to have fish tanks and as a toddler, M knew exactly where they were.We'd enter the store and he'd immediately point in the direction of the fish tanks.  I'd push M in the shopping cart to the tanks and he'd squeal with delight at the fish.  I'd stand there with M in the cart, watching him watch the fish.  It was the first thing he ever took a true delight in.

M had never really shown genuine interest in anything and seemed to lack attachment. He never had a favorite toy or stuffed animal.  He never had a favorite television show and never cared for the image of a particular character to be printed on his pajamas or sippy cup. Of course he was amused and entertained by these things, but he never had a "favorite" anything.  Frankly, he couldn't have cared less.

This bothered me.  When people asked what M liked, I would imagine what a typical boy M's age would like and I would answer accordingly. Basically I lied through my teeth.

But now, he liked fish. Now, when people asked what M liked, I could say that he liked fish.

We celebrated M's third birthday by taking him to the aquarium.  He loved it.

At the age of five, when M was in the hospital having major kidney surgery, I found a lamp in the hospital gift shop that looked like an ocean.  Images of fish moved through the blue glow of the ocean light.

When M turned seven, I bought him a small desk top fish tank for his birthday.  While we shopped for it, Miss J found a Sponge Bob figurine and placed it in the tank.  (My love-hate relationship with Sponge Bob could inspire an entire blog entry of its own, but basically M loves Sponge Bob.  I do not share this sentiment, however, when your child with special needs shows a genuine interest in something, you go with it.)

When we revealed the tank to M, his face was blank.  M was unimpressed.  I finally realized that M probably didn't understand the purpose of the fish tank without fish and water in it.

Together we set up the tank.  He carefully poured in the gravel and added the water.  Miss J placed the Sponge Bob figure and the artificial plant. I took him shopping at a local pet store and told M to pick out a fish for the tank.  He picked out a red and blue guppy.

Depending on the day, he would tell you the name of the fish was "Sponge Bob" or simply "Fishy."  

M would insist each night that the colored lights within the tank be left on so he could watch the tank as he drifted to sleep.  In the morning, M would take a pinch of fish flakes from the food jar and would drop it into the tank.

Yesterday, Fishy went belly up.

IN a "Bad Mother" moment and caught up in the business of my own life, I forgot to tell M.  I also forgot to take Fishy out of the tank. I put "Flush Fish" on my mental To-Do list in the midst of running my errands.

I didn't get to it soon enough.

This afternoon, M was playing happily in his room.  I had been folding laundry in the living room.  M flew out of his room and ran to me, crying.

"Mama!" he cried.  "My fish died!"
"Yes, bud.  Fishy died.  I'm sorry."

M cried for half a minute before announcing to me that he was going to watch tv.  He'd already moved on.

I feel sorry that Mr. Fishy died, yet at the same time I am a bit happy.

I am happy that M noticed the fish was dead.  I am happy that M has some degree of understanding that there is a difference between living and dead.  I am happy that he showed genuine emotion, no matter how brief it may have been.

I am thankful for these little revelations that Mr. Fishy's passing brought to me. I am thankful for anything that helps me know my son better.

Saturday, May 26, 2012

Old Shoes

I sat on the floor by M's closet inspecting his shoes.  He needs new ones.  His favorite pair of gym shoes ( or as M says, his "meeskers" because he can't quite say, "sneakers")  are getting tight.  The toes are hopelessly scuffed..  I turn the shoes over and notice the dirt caked into the sole; evidence of a little boy playing hard in the still-soft spring soil of our back yard.  Many times I have stood at the back door clapping the shoes together to loosen the dirt that found its way in the crevices.

I have deemed his favorite shoes to be "back yard" shoes.  They are not in any condition to be worn in public, but they are the perfect back yard shoe.  I insist M remove these shoes in the garage before he enters the house but he often forgets and walks through the house in them.  Too many times I have have crouched on hands and knees scrubbing ground-in dirt out of the carpet that had been tracked in by a certain little boy wearing these mud-caked shoes.

Yes, M will need new shoes.

Like many mothers, I gasp from sticker-shock at the price of boy's gym shoes.  I grumble at the thought of taking M to the store to be fit.  I will look at the new shoes in disbelief at how much M's foot has grown and will wish that his growing would slow just a little so that he may stay in a pair of shoes a bit longer.  I am like any other mother.

But unlike many mothers, I will often sit by the floor of my son's closet and hold a worn out , filthy shoe in my hand and I will feel my eyes becoming wet with tears of joy.

I stare at the shoe in my hand and remember a baby, who we were told, may never walk.

I remember M's physical therapist telling me that there was no need for M to wear shoes unless he was walking.  I bought shoes anyway.  Not many two or three year old boys are pushed in strollers without any shoes on.  I wasn't up for the line of questioning from critical old ladies in supermarkets asking, "Where are his shoes? Why doesn't he have any shoes on?".

I put shoes on his feet anyway.  Call me a rebel. 

The shoes covered the pristine white bottoms of his socks.  The perfect bright-white bottoms of the socks that never been walked in were like a harsh neon sign announcing my son's immobility to me daily.

When M outgrew those shoes, I could have put them back in the box and returned them to the store. There was no dirt in the treads.  No fraying of the laces.  No creases in the leather.  The shoes looked the same as the day they had come home from the store.

At two, M was fitted for leg braces.  He sat in the orthotist's office, his legs wrapped in plaster to get a cast  to make the mold for the hard plastic that would support his ankle and leg. The brace would consist of a hard plastic boot that his foot would slide into. Leather straps at the ankle and the knee would hold the braces in place. 

As he sat with his legs wrapped, we picked out a design for his new braces.  We picked the bright blue plastic with race cars printed on them.

The orthotist told M they would be so cool.
Silently I thought, no, this is far from being cool.

The braces had to be worn with shoes.  I bought M a pair of gym shoes in a wide-width and  a few sizes larger than his foot to accommodate the brace.  I ripped out the lining of the foot bed to create a larger space in the toe box for the brace to fit comfortably.  I slipped the shoes over the braces.  They looked awkwardly large and clownish on M's small feet.

I'd forgotten M's hat on this hot summer day.  This one was a random one my mom had.  It could not be more appropriate for M.
It was in those shoes that M first crawled.  He was nearly three.  Crawling wore down the leather of the toes of the shoes. I would rub my thumb across the worn leather and smile. I smiled for the gift of worn, scuffed shoes.  I smiled for the now-mobile boy who wore the shoes. 

We were told M may never walk.  I wish during those dark and fearful years that I could have whispered into my own ear that someday I would be sitting on the floor by M's closet holding old, worn out shoes in my hand.

Tuesday, May 22, 2012


My husband recently won a prestigious award at work.  He will receive the award this week and I am brimming with pride for this great accomplishment.

I am also terrified.

You see, the award is being presented in another city.  One thousand miles away from our home.  We'll be flying there.

Those who know me well know that I hate to fly.  The thought of boarding what is essentially tin can and zooming at hundreds of miles per hour miles above the earth terrorizes me to the core.  I board every airplane with known certainty that it will crash.

And while I have never been a fan of flying, since having children it has gone from a dislike to phobic levels.  Miss J is just ten years old.  She is entering adolescence and needs me now more than ever.  And M.  Who would want M and love and care for him like I do if I died?  What kind of mother takes such a known risk when staying safely on the ground is an option?

I gave this some thought.

"I'm sorry hun, but I am not sure I can go with you" I told Mr. A.
He immediately recognized my attempt at a cop out and called me on it.
"Why not?"
"Well, you know....I just started my job not too long ago and I really shouldn't take the time off."
"You can ask, though."

I presented the situation to my boss who gave me a wide smile and granted me the time off without question.

Planning this trip has been a nightmare for Mr. A.  He called me from work with our travel plans.  He had a flight for us, leaving at 9am the morning of the award ceremony.

"What kind of plane is it?"  I asked him.
He paused. "It's an express jet."
"No.  That won't do.  Too small.  We need another plane. Is there a bigger plane?"
"The only other plane leaves before 6am.  We'd have to be at the airport before 5am."
"If it is bigger, we can take the early flight."

Moments later, he called me back.  He'd booked the flight.
"I was able to get us into business class" he said happily.
"In the middle of the plane?"
"Yes, the middle."
"You know I like the back."
I like the back of the plane.  That way I can see the entire plane in front of me.  The flight crew hangs out in the rear and I like knowing they are nearby. In my illogical fear, this makes perfect sense to me.
"Well, I already booked the middle."
(My mental wheels are already turning to see how I can manage to get myself moved to the back.)

I have been paying close attention to my body, just to check if I might be coming down with something.  Perhaps a fever or flu that would ground me. Aside from nerves making me want to toss my lunch, I feel perfectly fine.

My dear friend called to ask if I was excited for the trip (which coincides with our 14th wedding anniversary.).  I told her I was scared to death.

"Oh relax!"  She chided me.  "You're going to have such a great time!  I'm so happy for you!"
"I hope I don't die."
"You aren't going to die."
"How can you say that?"  I questioned.
"Really.  You won't die.  I promise.  Just take Benedryl before you get on the plane and take a nap."

I happened to be walking into the pharmacy to pick up a prescription while I was on the phone with her.  I got my medication and asked the pharmacist how much Benedryl I could take at once without killing myself.  Perhaps enough to put me in a roughly two hour coma.

I feel for Mr.A...I feel for him for having a wife who dampens his excitement with her fear of flying (actually, I don't fear flying. It is crashing that I fear.)  I feel bad that he must constantly reassure me that I won't die. I am hoping I can psyche myself up and get over myself so that Mr.A and I can enjoy this wonderful award, in a beautiful city and also celebrate our anniversary.

So if you would kindly send a few prayers and good vibes and well wishes my way, I would greatly appreciate it.

Sunday, May 20, 2012

Potty Training M

M has "Global Developmental Delays."  For those blissfully unfamiliar with the term, it means that every skill M acquires takes far more time that a typically developing child.  In our world, "inchstones" are celebrated because the "milestones" frequently elude M. Everything M has learned to do has been accomplished through the help of a devoted team of doctors, therapists, teachers and family.  The skills unfold ever so slowly and raising M is a wonderful lesson in patience and perseverance.

In infancy, M had to be taught how to eat.  M sat up at 21 months.  He four-point crawled at 2.5 years.  First steps happened at 3.5 years and M was able to walk independently shortly before age four.  At age five, M had but a handful of words and another handful of signs to communicate with.  He was six before he began putting words together to construct simple sentences. I beam with pride when I share this, for once upon a time we were cautioned M may never walk and may never talk.

Life with M has been a question of "Will he ever....."
When M was very young, one of the "Will he ever...." questions I'd ask myself is if he would have the ability to potty train.  M has very low muscle tone, neuromuscular dysfunction and significant kidney disease.  Physiologically speaking, I wondered if it were even a possibility.

I asked this of M's urologist as he was writing M's first prescription for diapers. M was three years old but was the size of an average seven year old and standard Pampers just didn't cut it any more.  The urologist explained that we could mail order larger sized diapers for M and that insurance would cover it because they  were a medical necessity.

He then answered my question and said he felt that M did have the ability to be toilet trained.  He guessed it would happen sometime between the ages of 6-8.

The summer before M turned four I decided that I would try to at least have M use the toilet in the morning when he awoke.  He'd been waking up dry for months and it seemed like a morning scheduled visit to the toilet just might work.(Afterall, I knew that his bladder was indeed full.) It was difficult for M to relax his muscles to go on command and it was several days of trying before we had a success.

What happened next I would call miraculous.  Within days, he was peeing on the toilet every morning.  Within two weeks, he was using the toilet full time and I felt comfortable moving M into underpants full time. He was 3 years, 10.5 months old and he was potty trained, day and night.

This was a shout-it-from-the-rooftops moment for me.  He was potty trained!  He wasn't even four years old! He wasn't that delayed on this one.  And he had achieved night time dryness before many of his same-aged peers....a fact I would manage to work into conversation whenever possible.  "Yes...M is potty and night!"

What made it all even more remarkable is that M had toilet trained within months of learning to walk.  He had trained at lightning speed despite the low tone, the coordination and balance difficulties, the kidney disease.  He had done it. (When every achievement has come through years of hard work, it was nice to have the potty gods smiling down on my and giving us an easy go of things)

M was toilet trained, but he was far from having total independence in the bathroom.  In those early years, he still needed my help to physically get on and off the toilet  (Being so tall, M did not having the benefit of using a toddler's potty chair or ring insert and had to train on an adult sized toilet) .  He needed me to work the buttons and snaps.  He did not have the strength nor the balance to bend over and pull down his pants without falling.  Even as M nears eight years old, he still lacks the fine motor skills required to button and zipper independently.


M's life is dictated by routine;  routine that begins from the moment he cracks open his eyes.  Each and every morning it begins in the same manner.  M will wake and immediately seeks me out so that I may walk him into the bathroom. (A routine so ingrained in me that more than once I believe I have actually slept-walked into the bathroom) I help, if needed, but my presence is more about the habit of me being there than an actual need for my help.

M has recently changed up this routine.  On his own.  Without prompting from me or anyone else.  This in itself is an "inchstone"  (insert choir of angels singing, "Halleluja!")

On morning, a few days ago, M was up earlier than usual.  As usual, he came to wake me.  Rather than inform me of our morning walk to the bathroom, he asked for a drink.  I suggested he use the bathroom first and he told me he already did.  Sure enough, he had, as evidenced in the toilet bowl.  (Typical to many seven year old boys, the art of flushing is lost on M)

M has continued to do this every morning since.

As I type this, I am laughing out loud at how ridiculous this may seem to some who read this write about my son's bathroom habits.  Perhaps to some it may seem insignificant that my soon-to-be-eight year old is using the bathroom alone.  It may not be a shout-it-from-the-rooftop kind of a big deal, but it is the kind of big deal that you do share with the grandparents and your closest friends who 'get it.'  I am grateful to have people in my life who will share my excitement on this one.

I keep a mental checklist of the things I worry about regarding M.  I feel good knowing I can cross off:
  •   Worry about when M will finally use the bathroom alone.  
(Yes, I've often pictured myself, old and gray with my walker, escorting M into the bathroom.)

It may seen small and insignificant and not worthy of much merit, but these are the thoughts that occupy my mind.  These are the things I think about enough to write about.

Wednesday, May 16, 2012

One Word

Miss J is a born performer. It is in her blood.  She has two passions in her life:  singing and dancing. Specifically Irish dancing.

The Irish dancing world can be a competitive one.  On any given weekend you can find a competition, called a feis (pronounced, "fesh") to sign up for.  Miss J loves to feis.

My feelings are mixed about competitive dance.  I have seen the light on a child's face as they jig down the hallway with a tangle of medals jangling around their neck.  I have seen the pride on a dancers face when they know they just danced the best they ever have.

And with that, I have also seen the crushing disappointment when a dancer checks a score sheet and does not see her name listed among those who have placed.  I have seen champion dancers fall and sprain ankles during competitions.  I have seen many, many tears.

I want Miss J to dance because she loves it.  Because it makes her feel spectacular.  I want dance to free her and not to stress her out.  She assures me time and again that she loves to compete.  I know this is true because while she may not always be the best dancer on the stage, she is certainly a dancer with presence and always, undeniably, has the biggest smile.

Last weekend Miss J competed in an out-of-state competition seven hours away.  It was the first time our family has traveled so far for a competition and Miss J was excited for the feis.  She'd practiced hard and was hoping to sweep the medals.

We woke early the morning of the competition and made our way to the hotel cafe for breakfast.  As Miss J navigated the breakfast offerings, she overheard two girls talking about Irish dance.  Miss J's ears perked up and excitedly asked if they were going to the feis.  They were.  The girls were sisters.  One was the same age as Miss J.  The other, two years older.

As I helped M pick out his breakfast, I could hear Miss J and the girls giggling at the make-your-own-waffle station.  (Apparently a waffle stuck in the iron is a very funny thing.)  They laughed and joked as though they had known each other for years.

As we finished eating, Miss J wished her new friends good luck at the feis.

We arrived at the arena and prepared for the competition.  Moments later, her new friends arrived and took seats near ours.  Miss J and the other ten year old girl would be dancing on the same stage.

Through the hours of dancing and waiting-to-dance, the girls got more acquainted with each other.  They ran between their seats and the stage, arms linked together.  They made up a secret handshake.  Email addresses were exchanged with promises to write. At one point the laughter got so loud I had to shoot Miss J my best evil-mother-eye as a warning to pipe down.

Midway through the day, I was checking Miss J's syllabus to see what her next dance would be.  I noticed that Miss J and her new friend would dance the next dance together.  As competitors.

This made me a bit uneasy.

When Miss J and her new friend found this out, the squealed with glee as only ten year old girls can.  Knowing that dancers compete two at a time, the girls linked their arms tightly together so that they would not be separated and would compete at the same  time.

I heard Miss J tell her new pal, "I am SO happy I get to compete with you!"

One word stuck out.


"With you."  Not, "Against you."

The girls danced.
Miss J did not place.
The other girl placed first.

That day Miss J  did receive a second place medal, but she did not sweep the medals as she had hoped.  I am very proud to say that for Miss J, it really didn't matter.

Monday, May 7, 2012

The Gift.

My girl turned ten years old.  Ten!  How did that happen?  Wasn't it just yesterday I took a tiny,  wide-eyed, squawking bundle wrapped in pink home from the hospital?  Did that first smile and those first steps really happen so many years ago?

My girl is ten.

She is better than I am.  She makes me proud.

I have a vivid memory from childhood that stands out in my brain.  I was perhaps five or six at the time and I had a friend come over to play.  We'd decided to play a game of Candy Land.  As my mother had taught me, I offered my guest first pick of the pawn she wanted to use for the game.  She picked the red gingerbread man.  The red pawn that I always used when I played with my mother.  I let my friend use the red pawn and I let her go first.

I remember this being a big deal for me.  Taking the second turn in the game and not using the red pawn had felt like such a huge sacrifice for me.  I can clearly recall my inward struggle of wanting to do the right thing and to be a good friend but also wanting to make myself happy.  I still remember how proud of myself I felt that I had made the right choice.

I suppose at that age, Candy Land was a pretty big deal for me.

Fast forward years later to Miss J....

When Miss J was turning six, she made it clear to me that she did not want birthday gifts.  She wanted to take up a collection for a local food pantry/soup kitchen. She was in kindergarten.  It was all her idea.

I asked her if she was sure.  I remember her reply:
"Mama, do I really need another Barbie?  I have everything I need and there are people who don't have dinner." She had looked at me as if I had asked her the most ridiculous of questions.

That year, she collected over six hundred dollars.

The letter she received from the director of the food pantry said that money would feed two hundred families for one month.

Every year since then, Miss J has donated money to the same food pantry in lieu of gifts.

I struggled to share my red pawn from a game of Candy Land while Miss J gives so freely, so joyfully.

She celebrated her tenth birthday, but I got the gift.