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.