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

When Did You Know?

Often times, people will ask me, "When did you know that Sean had autism?" I have been thinking about that a lot lately. When did it truly sink in, down to the bone; when it could not be ignored any longer. I thought it best to look through writings and journals that I had kept, in order to answer the question as honestly as I can.

From all accounts, he was perfect. His skin was the color of gleaming ivory contrasting against his bursting red hair. His blue eyes were surrounded by long, thick reddish-blond eyelashes, like petals on a flower. People stopped me all the time when I took him to the grocery store or the post office, “Look at his hair. He’s gorgeous.“ Yes he was. My little angel. He was simply a beautiful baby, my pride and joy.

So I guess if you ask me honestly, when I realized something was amiss, I would have to say I don’t know exactly. There was not one clear moment. It happened over time, like lint collecting in a dryer, little moments accumulating over time to produce something bigger, something too hard to ignore.

I kept a journal for Sean. I had imagined that it would be filled with all these wonderful stories of him as a baby, then as a boy and finally a young man. It would be a gift I would give him when he left for college or the night before his wedding or the birth of his first child. I imagined the surprise in his eyes, the smile spreading across his face as I handed it to him.

These are things I took for granted. I made assumptions never realizing that life didn’t always unfold the way I had imagined. I wrote in it until it was just to difficult to write any more.

There are sweet moments like November 8, 2001 when Sean was nine months old-- “Sean you are officially walking."

In August 2002 it says, “we are having such a great summer, spending lots of time @ the swimming pool…I took you for your first haircut yesterday. You were such a good sport!”

On March 27, 2003, two months past his second birthday I wrote, “You are currently in the 20% for weight and height. You are a feisty little rascal.” I glued a picture of him underneath the entry. He is wearing a sea foam green sleeper, his cheeks apple red, and he is smiling, his eyes holding onto laughter.

By the next month in April of 2003 he started to talk. He said, “bye-bye”, “yellow”, “Mommy” “Da-dee” “dog” and “Papa”. But in the same entry I wrote “You were kicked out of Mom’s Day Out for climbing, pushing and hitting other kids. Oh, I so hope this is a stage! When you are angry you bang your head on the floor.”

There it was. I was beginning to lose him. Even in my writing I can sense my own worry and I hear the panic in my voice. It was the first entry where I had begun fearing what was to come. I was beginning to brace myself for what lie ahead.

Still, I wanted to believe what everyone told me.

“He’s a boy. They talk later.” or “He’s your second. His older brother talks for him” and, “You’re spoiling him -- he needs more discipline. A good hard swat.”

But all I can remember is thinking, “Tell Mommy what is wrong and I can fix it“. How could I fix something that I didn’t even understand?

The last entry before the final entry was in July of 2005 when Sean would have been 4 years old. Simply put I wrote, “You are lots of work. You have a very quick temper and you get very upset at least twice a day.”

That time period is blurry. I stopped writing in his journal. It became too hard. There are no entries for two years. The final entry was intended to be the last -- a couple of paragraphs trying to wrap it all up, the squashed bow on top of the crushed box.

On August 22, 2008 I start with, “Wow, 2 years slipped by and I’ve been afraid to write in your journal -- I am sorry for that. My heart is heavy with worry and sadness. My precious little guy -- what I had imagined for you years before did not really pan out. Since moving to Portland, Oregon (not too long after) we were told by a doctor that you have Autism (it was a fear hidden far in the caves of my mind). We’ve watched you struggle and fight. We haven't always done right by you. We didn't understand…Oh Sean, I wish I could make you all better, make the world an easier place for you to live in.”

The page in my journal is riddled with spots, dried salty teardrops that fell from my chin and free-fell onto the paper. It is a painful reminder of how much sadness a person can hold.

Although I can't say is has been smooth sailing ever since, I can say, honestly, it has gotten better. As a family of four people there are rules we follow -- stay in the present and try our best to be kind and understanding to each other, even during the toughest moments.

So today, Sean ran past me quickly, his soccer cleats leaving pine needles and grass on the floor, his body tumbling forward in delight and his smile, like a life saver, keeping me afloat. It doesn't really matter when I knew for certain ; it only matters that we take each day like a gift and make the most of it. Life is really precious and so is Sean.