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.

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.

Splash!

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. 

Present

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."

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.

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.