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 trained....day 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.

Today....

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 blog...to 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.

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.


"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.

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.

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.

Until...

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.

Emence

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."
"Ambulance?"
"Yes."

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."
"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.
"Frightened?"
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.

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.

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 son...how strong he was!....how big!...how healthy!.....an 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.