Tuesday, August 13, 2013

When The Cake Is (Bitter) Sweet Part II

We recovered from the initial shock surrounding M's birth and learned how to navigate our new life.  There were doctors appointments and endless therapy and hospital stays and medication and tests and  countless procedures.  There was researching doctors and fighting with insurance companies and raising a percocious two year old.  There were challenges and set backs, but we found a new normal within the muck of it.

The years passed and the dust settled.  M grew and thrived and so did we.  Fears lessened and we figured out how to cope with the ones that remained.  We began to shed the heaviness we'd been dragging around with us.  And really, honestly, without a doubt:  life is amazing.

If I am to be honest, there is a tiny piece of me, just a sliver, that feels that twinge of sadness around the time of M's birthday.  It is like a weed in the garden...you pull it and discard it, but somehow it finds its way back in.

As they days lead up to M's birthday, there is a certain melancholy that exists.  It is feeling haunted by the milestones that continue to elude my son.  They are like a mirage....you can see them just in the distance but you cannot grasp them.

It is the gaps in development that, at times, seem to widen rather than close.  It is wanting so much more for him and knowing that some things, for him, are not meant to be.

There is a shred of disappointment that in his life he has never, ever, asked for a single gift.  He has never requested a particular themed party or wanted a cake adorned with whatever on-trend character little boys are into at the time.  He has never had a celebration with peers and I know I will never have a flood of energetic boys decending upon my house.

When M's birthday nears, these feelings roll in and, quietly, like thick fog, surround me.  I celebrate his life while grieving a loss.  This is a little piece of rasing a child with special needs that is particularly difficult.

These feeling are only a small thread in the fabric of my emotion.  Of course there is joy and love and peace and calm and happiness.  Of course, the good far outweighs the bad.

Tomorrow M will wake and Miss J has already decided she will cook him pancakes and that we will pile into the bed to eat and watch cartoons.  She has saved her money and bought him a large and ridiculously expensive single cookie on a stick and elaborately decorated with icing.  She picked this knowing he would love it.

He will play outside with the dogs  and we may venture to the park.  His grandparents will take him out for a cheeseburger for lunch.  In the evening we will meet with family and a few close friends at the beach.  We'll kick a soccer ball and build sandcastles and chase the waves.

We'll put a ninth candle into his cake, grateful and acutely aware that each candle is a gift.  We will allow M to eat as much cake as he wishes and we will smother his frosting coated face with kisses.

For M, the day will be perfect and during the celebration I will be reminded that a birthday is not an extensive guest list and hired entertainment and themed cakes and elaborate decorations.

I will pause and be grateful to celebrate M and all of the people who color his life.  The day will be good and I will put my nine year old son to bed with a full and happy heart.


When The Cake Is (Bitter) Sweet (Part I)

My son M was born on Saturday, August 14, 2004.

The labor itself was uneventful but M made his debute into this world still and silent. The details get fuzzy for me.  I can only remember fragments, like in a dream.   

I remember the room suddenly becoming silent.
Many more people appeared in the room.
There was quiet chaos.
Someone said it was a boy.
A mask was placed over M's face and air was forced into his body.
And then M was taken out of the room.
Mr. A went with him.
I lay in the bed, still bleeding, scared and alone.

They had taken M to the NICU.  Apgars were poor.  His lung collapsed.

There was a problem with the epidural and I had become much more numb than I should have been.  Hours would pass before I was allowed to get into a wheelchair to see my son.

He was connected to wires and tubes. Machines hissed and pumped and beeped.  I would not be able to hold him for another day so  I held his tiny hand.

Doctors kept coming into my room to talk to me.  I wasn't able to process any of it. My head hurt.

People knew I had gone to the hospital to deliver and I knew they'd be waiting to hear the news about the birth of our second child.  I told Mr.A to call our parents and tell them what we knew so far.  I didn't want any visitors and told him to tell everyone that.

I laid in that bed, on a plastic mattress with scratchy sheets and tried to make sense of what was happening.

On August 14th 2004, my world suddenly changed.

I became the parent of a child with special needs.

There is a sense of guilt and a bit of sadness when I think about that day.  Sadness that I never got to experience a single moment of 'normal' with my son.  Worry began with his first breath.

And guilt that I cannot say that his birth story is a happy one.  

Guilt that his birth is so unlike Miss J's.  My girl, who made a slow and stubborn entrance into this world. My girl who arrived alert and wide eyed and wise.  When she arrived elated grandparents cheered and Mr. A cried and I felt like I already knew my girl.  When she arrived the exhaustion of a thirty one hour labor suddenly disappeared and I called everyone I knew to tell them my news.  When she arrived, the joy was palpable.

Guilt that when my son was born the only emotion I felt was fear.

Wednesday, August 7, 2013

The Red Thread

A Chinese proverb says:

"An invisible red thread connects those destined to meet, despite the time, the place, despite the circumstances.  The thread can be tightened or tangled, but can never be broken."

Our family recently took a road trip to the DC area, several hundred miles from our midwest home.  By sheer chance, a friend of mine and her family were also going to be in the DC area at the same time, several hundred miles from her New England home.  Since we would be in the same area at the same time, we set up a time and place to get together with our families and picked the National Zoo.

I met her in Kindergarten when we sat around the piano on small carpet squares while our teacher played and we sang.  The carpet squares were kept stacked neatly in a corner of the room and there was only one purple one.  Of course, we both wanted it.  I don't remember who ultimately got to sit on the purple carpet square on that particular day, but I remember that is how we met and that is where the story of our friendship began.

We were typical childhood friends.  We played at each other's homes and made forts in the woods and went sledding on the big hill behind my house and would swing on the swings at hers.  We were like most girls with one small exception that came in the form of a younger girl with a head full of blond curls. 

My friend's sister, younger than us and who happened to have significant special needs.

Through the years of playing in my friend's home, her sister became quite familiar to me.  True, she was quite different from most little sisters I knew at the time, but I just saw her as another member of the family. `This little girl was my first personal relationship with a person with special needs.  It was a positive experience that taught me that 'different' deserved equal respect and kindness and was nothing to fear.

In the fifth grade, I moved away.  My friend and I kept in touch for a while, but after a few years we'd lost touch.  I never forgot her and through the years wondered about her and her little sister.

A few decades later I was living 1,000 miles from my childhood home, raising Miss J and M, my own child with special needs.  I turned to Facebook and found my childhood friend.  We reconnected and through emails, she has been a source of support and encouragement to me.  Her openness and willingness to share her experiences growing up as the sibling of a child with special needs have helped me in guiding and raising Miss J.

And then, thirty years since we'd seen each other last, we stood face to face at the National Zoo.  We met each other's family and I was able to see her parents again for the first time since I was eleven.

I spoke at length with her mother.  I asked her questions about what it was like when her daughters were young.  I asked how she kept her sanity on the difficult days and how she handled holidays and what she felt made her a stronger mother and what she did to ensure her other children also received the time and attention they needed.

She shared anecdotes of her experiences and offered advice and encouragement and words of support.  My conversation with her mothered me in a way that I needed.  Many women mother, but far fewer are parenting children with special needs and can so intimately relate to the experiences that are uniquely ours.  

It was the day after our return from the vacation that I read that Chinese proverb for the first time.  Thirty years later I had grasped that red thread and found my friend still there on the other end.

Saturday, July 13, 2013


This evening I took M and Miss J to the pool to cool off from a sticky July day.  Much of the time was spent in the main pool until Miss J said that she would like to go on the drop slide and M said he wanted to watch her.We made our way out of the main pool and over to the slides.

The drop slide consist of a short, near vertical slide that ends several feet above the water's surface, plunging the rider into the water below. Being such a hot evening, the pool was busy this evening and a line, deep with waiting children, had formed at the drop slide.

We noticed a young man, perhaps in his late teens or early twenties, sitting at the top of the slide, waiting to take his turn.  He sat, hesitating, to take the plunge.  He glided his hands along the sides of the slide.  He watched the water swirling around him.  He peered over the edge to the water below but he did not go down.

It was apparent that he had some sort of special needs.  Autism, perhaps?  As he sat, his father called to him from the side of the pool, coaxing him to take his turn.

The young man continued to sit and the line of people waiting behind him continued to grow.

Finally he lost his nerve.  He pulled himself awkwardly to a stand and the line of people behind him shifted and shuffled out the way so he could make his way back down the stairs.

Once at the bottom, he stood by the edge of the pool watching as one person after another dropped into the water with a splash.  He watched, and then, he climbed the stairs a second time.

When his turn arrived, he seated himself again in the chute.  Like the previous time, he sat.
And sat.
And sat.
Once again the line grew longer and somewhat impatient.  The lifeguards seems a bit uncertain of what to do next.  His father called out to him again to go.

He continued to sit.

The father called out again, growing impatient and told his son to either go or move out of the way so the rest of the people could go.  Once again, the young man pulled his body out of the chute and off the slide and made his way down the stairs.

He stepped off the last step, and just as before, stayed at the water's edge to watch one person after another drop into the pool.  And just as before, he made his way up the stairs for a third time.

This time I could see the slightest hint of exasperation on the father's face.  I saw the annoyed looks from some of the people waiting in the line, knowing that yet again, their turn would be delayed.

Again the time came for the young man to attempt the slide.  Again he sat.

And then, from the people waiting in the line:
"Come on!
You can do it!
You can do it!"
"You'll be okay!"

A small gathering of people had now assembled around the pool, everyone wondering if this young man would ever get up the nerve to tackle the drop slide.  The crowd shouted to him too, "You can do it!" Some people clapped and some people cheered.  The lifeguard gave him a thumbs up.  

And finally..he did it.  The place erupted loudly with cheers and applause.  The young man emerged from under the water beaming. His father, still standing at the edge of the pool, greeted him with a high five.  I watched many of the people who had been stuck waiting in line behind him come up to him with congratulations and pats on the back.

Together and with loud exuberance, we all shared the joy of this young man's acheivement. I looked at M, who was clapping wildly and Miss J, who was cheering loudly and was grateful for them to witness the amazing good that exists in this world. 

Friday, July 12, 2013


The other day, I read a blog post about a woman who was cleaning out her daughter's closet.  She was clearing out coats and boots and tutus and dresses and deciding what to donate and what to pack up and keep.  She wrote about the hand knit blanket she brought her daughter home from the hospital wrapped in.  The kimono sent from a friend in Japan.  A green fairy costume.

I have been there myself..pouring over my kid's belongings trying to decide what to part with and what to store in the attic in plastic Rubbermaid containers.  I have sat on the floor, undecided, about the fate of certain items and stuck on a memory of where and when my child wore the particular garment.  I've held tiny dresses and socks in my hands, trying hard to remember my children ever being so small.

I have cleaned out closets too...except there is a big difference between this mother and myself.

Her daughter is dead.  

She was four and it was a brain tumor. This mother has only the physical items to fit within the space of her hands where her child no longer is.

I read the post in my living room, coffee in one hand and a pile of laundry I had been trying to delay folding piled way too high on the couch beside me.  It was about noon and my own girl lay sleeping in her bed, knocked down with a fever and sore throat; the latest virus that happened to be making rounds in our neighborhood.  It was day four into  Miss J being sick and clingy and whiney.  It was day four of me growing restless and feeling cooped up and stuck in the house during a beautiful stretch of July weather after seemingly endless days of rain.

Four days and I was climbing walls.  This mother fought cancer with her daughter for two years.  

This morning Miss J awoke, fever free and able to talk without pain for the first time in days. M would be at summer school for the better part of the day and it would be just Miss J and I.  I wanted it to count and I wanted to imprint her beautiful, healthy brain with a memory of a day spent, present, together.

"Let's go" I told her.
"Where?"  she asked.
"Anywhere.  Where would you like to go?"
She thought for a moment.  And shyly asked, 
"Do you think we can go to the beach?"
I didn't hesitate.  Didn't think about laundry or dishes piled in the sink or errands that needed to be run after four days of being hunkered down in the house.
"Yes.  Go get ready.  After the beach, what would you like to do?  Anything."
"Really? Lunch?  Maybe sushi?"

We went to the beach and walked the shore.  We collected shells and driftwood and seaglass. We dug holes in the sand and chased seagulls and sat on the blanket, and for a time, said nothing at all.  I couldn't have wished for a more perfect moment.

We finally made it to our favorite restaurant, still sandy from the beach and our shoulders and cheeks pink from the sun.  We filled up on miso soup and salad with ginger dressing and ordered more sushi than we could finish.  

Miss J thanked me later.
"That was fun, mom.  But...I thought you had stuff to do?"
I kissed her head.
"I did have stuff to do.  Very important stuff.  I needed to be with you."

Saturday, July 6, 2013

Sunshine and Cupcakes.

I have been told, "Life is not always sunshine and cupcakes" and I do agree.  Life can be hard, frightening, challenging and, at times, cruel.

When M was born and I was suddenly the parent of a child with a considerable list of special needs, I was afraid.  Too many nights I have laid awake filled with worry about all the troubles and challenges that M would face throughout his life.

One particularly all-consuming fear was how the world would treat him.  I feared he would be teased mercilessly.  Bullied.  Taunted.  Made fun of without ever realizing he was the butt of the joke.  I imagined, at best, he would be ignored and left all alone.

I am a mother who can usually call it....but on this, I was blissfully, thankfully wrong.  In fact, it has been quite the opposite.  I can say now, that one of the blessings that has come with parenting M is being witness to the goodness and grace of people.

I have noticed that frequently, people go out of their way to do something kind for M:

The girl, one grade above M in school who is moving on to the middle school next year and wrote a letter to M telling him how much she would miss him.

M's peers who cheerfully greet M when we are out in the community or who find a way to include M in a game on the school playground or at the park.

The Santa who sat child upon child on his lap and gave each a candy cane...but who gently removed a bell from his suit and gave it to M and told him to 'always believe in Christmas'

The Amish farmer who took a liking to M and let him drive his buggy and gave him a tour of his dairy farm and gave him two helpings of ice cream. (*This one got its own post, "Mantra")

The owner of the horseback riding ranch who insisted that M be able to experience a full trail ride and did everything possible to make that happen (after I suggested that M have a simple pony ride) and  gave M (and Miss J) horse shoes...just because. (*This too got its own post too, "In the Saddle)

The barber who also volunteers at the firehouse and invited M (and Miss J and my very excited was-going-to-be-a-fireman-when-he-grew-up-but-became-an-engineer-instead husband) on a private tour of the fire station.

The zoo keeper who invited M (and Miss J) to come behind the scenes to hand feed raisins and cheerios to the lemurs.

The checker at Trader Joe's who noticed that M was fascinated by the scanner and invited him behind the register with her and let him scan our groceries.

It is the people who walk in the parades who notice M and make sure he gets one (or two, or ten) of whatever they happen to be passing out.  

It is the people who throw an extra handful of candy in his bag at Halloween.

It is the servers in the restaurants who show up at our table with complimentary ice cream or cookies.

It is the complete strangers who talk to M in check out lines at Target and hug him tight before he leaves.

And then there was today....

I took M on an outing today to a local kiddie amusement park.  During our visit I had M sit and rest on a picnic table in the shade.  A few tables over, a girl was having her birthday party and cupcakes were about to be served.  As I sat with M a woman came over and tapped my shoulder.

"Excuse me, " she began "We are about to have cupcakes.  Can you son eat them?  May I offer him one?

M answered for me, "Yes, please!" 

He sat there at the picnic table, happy to have been given a cupcake.  

I sat there watching him, happy for that gesture of kindness and surprised that a mom, busy with her own child's party, noticed a little boy sitting several tables away and took a moment from that party to invite a stranger for a cupcake.

Sometimes life isn't all sunshine and cupcakes...but thankfully, some days are.

Friday, April 12, 2013

I Love You

Last week, a mother visited the preschool classroom that I work in to read a story to the children.
Before she began reading, she held up the book for the class to see. She pointed out that the cover was bent and the pages were worn. She told the class that all of her own children had loved this book. She smiled at her son, sitting directly in front of her, and said, "We still read this one almost every night." This boy, not quite four, was the youngest of her brood of six. No wonder this book looked so battered.

The book, titled, I Love You, Stinky Face! told the story of a boy who asks his mother if she would love him if....

He were a terrible monster with great, big fangs
He were a creature who lived in a swamp
He were a skunk who smelled so awful that his name was "Stinky Face"

To each question, the mother lovingly reassures that she will always love her child.
She will love him forever.
No matter what.
She will take care of him
Be there for him under any circumstance.

As this mother read the book to a group of captivated children, I recalled when my own children were that young. When, after a bath, we would snuggle under the covers and read. When Miss J and I would have our playful banter of "I love you more than you love me!" When I smothered them with kisses and pulled their ever growing bodies onto my lap and told them that no matter how big they got, they would always be MY babies.

And now my girl, my baby, is almost eleven.

My girl who is looking for a little bit more space and a little freedom. My girl who has begun to test the boundaries and who rolls her eyes and slams doors. My girl who is less and less a little girl with each day that passes. My girl who is morphing into someone new with her own thoughts and ideas and opinions.

I wonder what the sequel to this book would be if it were written for an adolescent tween....a teenager...an adult child. As Miss J grows, if she were to come to me and say....

I failed my test
I failed the class
I was suspended
I don't want to go to college
I got drunk
I smoked a joint
I had sex
I'm pregnant
I got a tattoo
I'm giving up religion
I'm gay
I got fired
I'm getting a divorce

Will I have the courage and the sense in the midst of such a scenario to tell her I still love her? Will those words come through loud and clear, straight through my own feelings of anger, disappointment, betrayal? Will I still tell her I love her when her choices are irresponsible and do not align with my hopes for her?

It is easy to love them when they are small and sweet with chubby baby cheeks and soft skin. It is easy when they draw you pictures and give you handwritten Mother's Day cards and dandelion bouquets. It is easy when they wander into your bed with tousled hair and sleepy eyes seeking out the warmth and comfort only you can provide. It is easy when they plant sticky kisses on you and believe that you hung the moon.

It gets harder when they are sullen and moody and when they roll their eyes and let out long dramatic sighs. It is harder when homework gets blown off and the room is a mess and when they pick at the meal you've prepared or when you have to tell them, no, you cannot go out until your chores and homework are done. It is harder when they tell you that you don't understand or look at you as if you know nothing at all. It gets harder when they challenge your rules, your ways, your ideals. It gets harder when they seem to want to be with their friends more than they do with you.

And when it gets even harder, as I expect it will, I hope I never assume that she knows I love her. I hope remember to tell her in the midst of whatever unpleasant or unexpected situation she may be facing:

No matter what you say, not matter what you do...I love you.

I hope I tell her often. I hope she hears it. I hope she knows it. Always.

Sunday, April 7, 2013

Walking Through Water

In just a few weeks, my girl will turn eleven.

When she was small and snug, safe within the confines of my protective womb, I imagined the type of parent I would be.

I was going to be the mother who understood all the ins and outs and nuances of her children. I would be firm, but fair. I would establish the line between parent and child, but I would be open with my children. I would hug them often, listen always and ground them when necessary. I would be calm and patient. I wouldn't yell. Or spank. Or make idle threats in moments of frustration.

I would keep a tidy and organized house. I would feed my children nutritious meals (balanced of course by the unexpected surprise of an occasional bowl of ice cream overflowing with whipped cream eaten in bed for no particular reason.) I would assist with homework and Boy Scout projects and would play board games and color for hours while balancing the house and a career.

I would not be the mom who lost the permission slip and had to ask for yet another copy, or who blew off the GirlScout cookie sale or who forgot the parent/teacher conference.

Weekends would be for outings as a family and dinners with grandparents and for listening to sermons on Sunday mornings in church. My children's friends would become a fixture in our home and we would host cookouts with friends. I would have perfect scrapbooks that would remind my children of the family vacations, Christmas, Easter, and birthday celebrations we so lovingly created for them.

I would never 'not have time' to shower and I vowed I would never leave the house in a half-hearted attempt at a pony tail or bun. I would never wear mom jeans and I would remain current on pop culture and music. I would wear sexy underwear under my clothes and would be the wife my husband adored. I would always have a flush of gloss on my lips and he would always be able to detect the soft scent of perfume in my hair.

My children would be polite and have impeccable manners. They would be witty and funny. They would be well liked by their teachers and popular among their peers. They'd respect their elders and their parents and would never dare to talk back or slam a door. (And if such occasions did arise they would be handled in a Bill Cosby-esque way and parent and child would come to a mutual understanding about respect and house rules and such offenses would never be repeated.)

Of course, they would be strong in academics and good in sports and would love practicing piano scales. Homework would never be forgotten and reports would have big capitol 'A' circled in red Sharpie across the top.

They would have clean rooms and clean teeth. They would be adventurous eaters who would never turn up their noses at vegetables. They would value hard work and would always do their best.

They'd never watch too much tv, eat too much candy, spend too much time playing video games.

As a parent, I would walk on water and my children would be amazing.

Or so I thought. Only the later half of that statement is true.

I do not walk on water.
I trudge through it. Slow and cumbersome and awkward.

I am eleven years into parenting and I am impossibly far from the view I had of my future self.

We have built a home of love and hugs and kisses, but within these walls are snarky children, parents who do yell, slammed doors and hurt feelings. Our home is neat and tidy, but laundry piles up and clutter is often hidden away in closets before company arrives. Meals are nutritious but roasts have been burned, exotic new recipes have failed to please the small ones and there is always a blue box of mac and cheese tucked away in the cabinet for they days when I cannot get it together to cook. My children have eaten ice cream or cereal for dinner...not as a special treat but due to my own parental laziness.

For one child, academics does come easy. She knows it and seems to enjoy sitting back and taking it easy. My other child is persistent and hard working, but his cognitive disability means that many of the concepts that come so easily to his peers continue to elude him.

I have lost the permission slips and have not volunteered to chaperone the class field trip and I have no idea when the PTA meetings are. I never iron and my minivan (they one I swore I'd never own) has graham crackers ground into the upholstery and white lollipop sticks stuck on the ceiling. (Not kidding.)

My son will never be a Boy Scout and he will never give the Valedictorian speech at his high school graduation. He cannot name US presidents but he can name every character on Sponge Bob (again, a show I swore my children would never watch.)

My girl is on the cusp of puberty and hormones are raging. There are days when she yells so loud I fear the neighbors will call the cops. She's told me she hates me, hates her life, hates this family and wants to run away. We've already had fights over what music she can listen to, if she should have her own cell phone and whether or not she can stay home alone. Her extreme IQ and even more extreme ADHD often make it easy for her to be misunderstood by her peers and her teachers.

And I kept the vow to myself that I would shower every day, but my hair not gets cut in sensible styles that are easy to maintain. I do not own a pair of 'mom jeans' but my the fashion choices in my closet are few and far between. My children can identify a 'really special' event approaching because that is the only time I get my nails done. When I need perfume I steal my daughter's and I think I have some lipstick in the bottom on my purse or rolling around under the seat of my car.

I am full of mistakes and frequently left wishing for a 'do-over'. I had sat awake in the wee hours after a fight with my daughter or a meeting with my son's teacher and have wondered what I could have done different. Better.

I do not walk on water. I trudge through it daily. But at least I am moving forward. And though I am far, far for the perfect vision of a mother I imagined I would be, I am there. Every single day.

Tuesday, January 29, 2013

Tupperware and Tree Branches.

Last year for Christmas, Mr.A and I surprised Miss J with a pet of her very own. During the weeks before Christmas I had purchased the necessary items to house and feed this little creature. On the morning of Christmas Eve, I picked up the small, buff colored teddy bear hamster I had put on hold the week before.

We have a family dinner at our house on Christmas Eve and we traditionally let the kids open a gift or two after dessert. Miss J entered the living room and was greeted by a large, plastic tote. I motioned to it and invited her to open her gift. I could see she was confused and had no idea what might be inside the large, unwrapped box. She lifted the lid and her gaze was met by two black eyes and a sweet fluffy face peering back at her. She squealed with delight and scooped up the small ball.

He was named Chester. Most mornings and every night before bed, Miss J would hand Chester to me so that I may say hello or good night to him. Chester enjoyed the many treats Miss J would give him, especially walnuts and apricots. (For which I would frequently scold Miss J and tell her to stop feeding Chester the ingredients to my morning oatmeal.) She'd bring him outdoors in the summer sun and created obstacle courses from cardboard boxes for him to navigate. Somehow, Miss J even convinced her teacher to allow her to bring Chester to the school to meet the class. It was amazing how happy a furry little rodent made Miss J.

And then, it happened.

I had sent Miss J to clean her room and reminded her to also clean Chester's cage. She screamed.

She flew into the living room where I was folding laundry. Her voice, filled with anguish. "He's dead! Chester is dead, mom!"

She fell into my lap and curled herself into a ball and sobbed. Her hair stuck to her wet cheeks, her face red, her small back heaving with each sob.

"Why mom? Why did Chester die?"

I had no answer for her.

She left the room to be alone. I found her by the cage, gently stroking the fur of her dead friend. Big tears spilled over her eyes and dripped off her chin and cheeks, wetting Chester's fur.

After she'd had some time with him, we had to decide what we would do with the body. Miss J insisted on a proper burial, but this is January in the midwest and the ground is frozen solid. (Not to mention the ice-storm that was taking place during this time of mourning.)

Ever so carefully, Chester was wrapped in Bounty paper towels and sealed him in a plastic bag. Miss J took the body outside and we walked to behind the shed at the edge of our yard. Miss J, fearing that Chester's remains would be eaten by animals, hung the bag in a tree. (My neighbors can clearly see this bag from their house and I do wander what they must be thinking.)

I stood in the freezing rain with my daughter, holding a makeshift funeral as she grieved the loss of her beloved pet. I had done the same myself at her age. I was about Miss J's age when my first hamster, Japser, went to the big wheel in the sky. I remember feeling he needed a special send-off so I laid him in a blue jewelry box I had just received that Christmas as a gift from my aunt. It had a crank in the back the you could wind up and a tiny ballerina would twirl around when you opened the lid. It played the music from The Nutcracker. I laid my hamster in the pale blue satin lining and covered him with squares of toilet paper and stored him in the chicken coop (it was winter) until the spring. My dear friend J officiated.

Other deceased pets were laid to rest in Tupperware, stolen from my mother's cupboard and lined with cotton balls and buried in shallow graves.

I feel for my girl and I ache to see her hurting. I watched her gaze at the tree branch from which Chester hung and I imagined Miss J in the future, a mother herself, doing the same with her own child. I imagine her offering comfort to her own child saying, "You know, your grammy used to bury her pets in Tupperware and I tied mine to tree branches."

We spoke a few words about Chester and shared some memories and together we headed back into the hourse.

Friday, January 25, 2013


M is eight years old. His August birthday makes him one of the youngest, if not the youngest, child in his third grade class. His IEP dictates that his day will be divided between this typical third grade class and his special education "Functional Academics" room.

Every Monday, I pull a stack of papers from M's backpack. The stack, surprisingly and wonderfully thick, is his homework to be completed during the week and turned in on Friday. The stack includes short stories with comprehension questions, vertical addition sheets, worksheets to practice time and money and handwriting exercises. Each afternoon, I sit with M at the kitchen table as he works through the stack. It is a cozy spot, tucked into a small nook of our kitchen and facing two windows that overlook our front yard. I will usually set out a cup of tea for me and crackers for M to snack on as we work. I guide him as needed and help him stay on task, but M's ability to do these works independently is increasing. I am fortunate to have a son who loves school, loves to learn and happens to be surprisingly motivated to do his work.

M and I sit together as he adds coins and tells time to the hour and half hour. He reads sentences to me and I help him with the words he unfamiliar with. I am well aware that his third grade peers are perfecting multiplication tables are devouring Harry Potter and Percy Jackson.

But take a good look at me....see beyond what you think a mother of a child with special needs might look like, and you will never see a prouder, more appreciate mother.

You see, once upon a time, not so long ago...we were told that none of this would be possible. We were cautioned that perhaps we should lower our expectations for our son. All too often conversations about M always seemed to include words like 'won't' and 'never'. Harsh words that fall hard onto a devastated parent's ears.

These lessons, while never easy, were essential. This adventure, which at times has admittedly scared the hell out of me, has made me a better mother. Today I am a mother who is wiser and more confident and I am grateful to sit with my boy at our kitchen table on a snowy afternoon watching him do what we were once told was impossible.

Wednesday, January 16, 2013


I tucked a ten dollar bill into M's wallet. It's the velcro kind, red and blue with an airplane on the front. I bought it for him years ago hoping that someday he might have a need for it.

Once per month, M and the other children in his special education class have a "community outing." Sometimes they go to the grocery store with a shopping list and pick up supplies for a cooking project, other times they might visit a local eatery for lunch. On these days I make sure to tuck his wallet into the zippered pouch of his backpack.

Today M and his classmates would be going to a diner. The purpose behind outings such as these was to learn the life stills they would need outside the classroom. The students will learn how to behave in the public restaurant setting, how to order off the menu, how to pay a bill.

I readied M for his outing. I always make sure M looks nice, but I take extra care on his community outing days. I dressed M in his dark wash jeans, his new grey striped shirt and put on his dressier brown shoes over his usual gym shoes. I gave him a spritz of his cologne and made sure his hair was brushed and gelled just the way he likes it.

I already know what he will order: a cheeseburger and fries, both smothered in ketchup. And to drink, lemonade. Possibly a milkshake.

Miss J came into the kitchen to grab her lunchbox before heading out the door to catch her bus. She noticed just one lunch box was packed and ready on the counter and asked, "Is he going out to lunch AGAIN?" She peered at the contents of her lunchbox and grimaced at her peanut butter sandwich and sighed heavily. "It is SO unfair." She said a heavy goodbye and trudged out the door.

As the door closed behind her, I responded to the empty room.

Yes, my girl, you are right. It certainly is unfair.

Unfair that only one of my children will spend a day in school, their mind challenged with information that will prepare her for college and life beyond.

Unfair that the other is being taught a life skill of how to order a cheeseburger and count change.

Sunday, January 13, 2013

Snow Day!

During Winter Break, we got a decent amount of snow in our area.  Miss J asked if we could got sledding at a hill nearby.  Mr. A and I tossed sleds into the back of the truck as Miss J and M bundled up.  Sledding (well, not so much the sledding part, but climbing back up the hill) is a physically demanding task which would be a challenge for M.  I let Miss J know that our time on the hill would probably be brief.  My hope for M was three runs down the hill.  I figured that was about the amount he'd be able to handle, then he and I would head back to the truck to warm up while Mr.A and Miss J continued sledding.  I was so certain it would be a quick trip that I attempted to temper her likely disappointment with promises of hot chocolate with extra marshmallow when we returned.

We arrived at the hill and I was happy to see that M was excited to go sledding.   He'd been once before, but it proved to be too difficult and tiring a task for him.  Exhausted, he fell into the snow and refused to stand back up.  Our time on the hill that day was under five minutes.  

As M and I walked through the ice and snow, Miss J was already at the top of the hill and on her sled. Eager to follow his sister, M quickened his pace to meet her at the top of the hill.  I positioned the sled and helped him in.  Together we zipped down the hill.  As we slowed in the fresh and untouched snow at the bottom, M announced, "Again!" and made his way back up the hill.

M rode down the hill with Mr. A and with Miss J and again with me. He rode by himself and held on to the sled's rope and pulled it back up the hill all by himself.

One of the times I was riding with him and he called to me, "Don't hit the tree, Mama!"  He gave a loud belly laugh we we did.  Another time he told me, "I like this!  I like the snow!"

Needless to say, M surpassed my hopeful goal of three runs down the hill.  I stopped counting but I am guessing he made at least a dozen runs before telling me he was too tired to go again.

He amazed me.  My boy, sledding down a hill and climbing back up again and again and again.  And for a second, it almost made me forget that once upon a time  one of the 'top docs' cautioned us that M may never walk or talk.