Searching

Where is the boy? Where did he go? Sometimes he is with me -- certain and complete. Happy and smiling. Running with wind on his bare shoulders, outstretched arms and muddy fingernails, his head rolling back in waves of laughter, his eyes closed and his mouth wet with drops of spring rain.

He is not here today. He is gray as if pillowcases of storm clouds are shaking out above him, his eyes squint with anger and his fists are curled, like unripe apples from branches.

I walk carefully -- my back holds onto tension like a heavy sponge and my throat is dry and sore. I want him back -- free of anxiety and anger. Free of autism.

But not today. He pulls away from me like the skin of an onion, translucent and vulnerable, falling to the ground. I keep close but some days it is impossible to put us back together and I hold on to what is left and what I can actually keep in my hands and feel with my fingers.

I haven’t looked at the baby book in a long time. It cradles memories like held breath, suspending time and pain for only so long, until I am dizzy and my lungs shatter. I wish it didn’t have to be this way. For him. And for us. I wish he could live without the diagnosis. It is a lot for such a small boy.

I watch his brother grow into a young man, strong and kind. He ties his shoes, packs his lunch, brushes his teeth, puts on his coat and smiles at me, his freckled hand waving to me as he runs to the bus stop. And Sean is near me, unable to put his shoes on correctly, unable to put his lunch in the backpack, unable to brush his teeth well, unable to zip his coat or to ride on a bus with his brother. There is only a mere 20 months between these boys and yet I feel the gap growing greater with each passing day. Their hands can no longer touch - the distance too great.

There is a picture of my boys, together in a moving box, laughing and falling into each other. It should make me happy but lately it doesn’t. I hastily tape my heart back together. Sometimes it breaks when I think of what we had then. We had hope and energy and love, bubbling like water from fountains, spilling with abundance. Did we know it at the time?

I try to remember that life is so much more than what I can even imagine. Sometimes it’s crucial to let go of the past and leave it behind in the photo albums that collect dust in the bookcase. And sometimes I need to remind myself that each day is full of new, budding moments and that I need to hold still and watch the future unfold, like a fresh flower, each petal unfurling into a silky, damp blossom holding out beautiful possibilities to the child playing alone in the fields.

A Letter To My Oldest

Dear C,

Where do I begin this letter to you, my oldest boy. Sometimes the things that are the most precious to us, the most loved also happen to be the most difficult to write about authentically. But I will try anyways.

First, thanks for being such a good son and a great brother to Sean. When your little brother was born, a snowy, blustery January day, the streets running thick with snow and ice, you came to the hospital with Papa to see me and meet your new brother. I was holding Sean in a worn, cotton receiving blanket, a swirl of red hair peeking out. You were not even two years old and you smiled, your sleepy eyes thick with lashes. But then you saw this tiny baby, and a hint of betrayal stung in your eyes as if to say,

"But how could you replace me?” (as if that were ever possible)

Your little body stiffened and you pulled away. I missed you so much when you left and felt terrible watching you go, your small hand wrapped in Papa’s big hand, the back of your head soft with tousled hair.

It took you some time to get used to this little intruder who seemed only interested in eating, pooping and sleeping. Once at Target you hit him with a Barney VHS tape, your face burning with anger and frustration. I scolded you and told you how disappointed I was. But soon after you became more than just Sean’s brother -- you were his guardian, his protector.

Sometimes, you would climb into his crib and sleep with him, a gentle arm around him, your chin nestled in his hair. It was as if there was an unspoken promise between the two of you -- a pact made,

“I will take care of you if you have to carry this -- I will share the load and cushion your falls. We will get through this, little brother. I promise.”

You were always soft with him. I never saw you hit him or scream at him. There was constant tenderness in your interactions with him as if you knew way before your dad and me.

It wasn’t easy. It was never easy. The first time I took Sean to a summer program for disabled children you helped me, holding my shaking hand, fighting back tears as I handed him off to the teacher. We had to move past another child having a terrible tantrum in the hallway -- her body thrashing and frantic hands grabbing at us. When we got to the minivan I cried and you said, “Don’t be sad, Mommy. He’s going to be great.” You were only five years old.

When you grew older you were the one who Sean would go to when he needed peace and safety. You knew how to redirect him and entertain him and make him feel whole.

Once you asked me if you would have a child with autism some day. I felt my mouth go dry and the tears clutter in my eyelids and said,

“Maybe. There’s a strong genetic link to autism so there might be a chance. Does that make you sad?”

You looked at me incredulously as if you didn’t understand why I would ask that.

“Sad? No. I think I’d be an awesome dad to an autistic child.” Sean’s diagnosis to you was more of trait like freckles or blue eyes and not something to be afraid of or dread.

When you overhead Dad and me talking about our future and our worries for Sean you said quietly to me at bedtime, “Don’t worry. I’ll always take care of Sean.”

For such a young boy you have always had such old soul responses. Your ambition is admirable and your concern for your brother is unparallel. I want you to know that we don’t expect you to take care of your brother when we go. You will grow and be a man someday with your own life and family and with that comes your own worries. Besides, Sean may surprise us all in the end. He may be our soft place to land.

I’m writing you this letter so you will always know that Sean wouldn’t be the boy he is without the love and kindness that you have always, unselfishly given him. You make such a difference in your brother’s life. We couldn’t ask for a better son and Sean couldn‘t possibly have a better big brother. All I want is for you to always keep that place for Sean in your tender heart. There is an undeniable connection between the two of you -- something larger than this lifetime.

Love, Mom