February 12, 2010

An Awful and Blessed Knowing

My child is lucky because what might have been did not happen.

And I am grateful every day. Every single day.

On our son's second birthday, a nationally-known pediatric neurologist told us our child had pervasive developmental disorder (classification jargon for autism). The doctor said he thought the "outcome" would be "good", but he could not be sure.

Outcome? This is my child's life. Not the results of a road race.

Good? What is a good outcome for a two-year old? Being potty trained? Saying mama or dada? Going to school with peers? Being a National Merit Scholar?

Could not be sure? What did that mean? We wanted to know, we wanted a diagnosis. We wanted to know now.

That night my husband and I lay in our bed, crying, talking, crying some more, wondering, worrying, questioning, accepting. We were angry and afraid. Why our child? What did that mean? I will never forget that night.

As it turns out, our child has Asbarger's Syndrome which is on the high-functioning end of the autism spectrum. He also has Benign Essential Tremor and Tourette's Syndrome. He was in special education until second grade. After a few struggles moving to regular school, he was phased out of needing assistance in the classroom, and began to shine. He had had his difficulties (making friends and dealing with change), but we raised him to believe as we do that "everyone has stuff" with which to deal.

Our child soon begins his third decade of life and is normal enough to often annoy his parents with issues typical of college students. Like wanting to go on an expensive spring break trip out of the country with his friends who can't seem to determine where they are going or where they are staying.

We said no.

But sometimes I secretly rejoice at the things we argue about: they are normal for a nineteen-year-old.

And I am so grateful. Every day.

Today I learned that the infant grandson of some dear lifelong friends has a problem with his brain. The child has had an MRI, but there's not a lot of data on scans of babies that age. The test was indefinite, so now they move on to a pediatric neurologist.

My friend sent me a heartfelt email from her son's wife -- the mother of the infant -- and I could not help but be haunted by her recounting the difficult night she and her husband had last night. Unable to sleep, thinking, questioning, wondering what did it mean?

Here's where empathy is a funny thing: our natural response as human beings (or mine anyway) is to offer them my experience. Where everything turned out okay. Where we had our challenges, but we survived them. Where our son is a sophomore in college, and behaves like most nineteen-year-olds (and often better.) Where a very smart doctor didn't know the answers.

As human beings we are also reticent to jump in.

Do we send the card?

Do we mention the illness when we run into grandma in the grocery store?

Do we offer the hug, without saying a word?

While I've been accused of never having an unexpressed thought, I defend my choice: to be there and err on the side of making the effort to be empathetic. For some, telling them all may be okay is the right thing to do. For others, a hug and no words and a listening attitude may be the best thing.

My husband's mother died last week -- a not unexpected death. We celebrated her life and mourned her passing. I was almost embarrassed at the outpouring of love for my husband's family.

And yet, his mother deserved this. My husband and my son deserved this.

The most touching tributes were from other people who knew what it is like to lose a parent, at any age. (My husband lost his first parent when he was only 25.)

The lesson for me is so clear (and of course God has to hit me upside the head as always).

Be there. Send the card. Ask about the sick relative. Tell your story if you think it will help. Hug, Love. Laugh and cry. Take just one minute.

Self -- are you listening? Just be there.