May 30, 2013

The Waking, Dreaming, Fear

Years ago, I would have dreams where Daniel would talk to me.  He would just ... talk.

And it was beautiful.

And in my dreams, I would think, "See, I knew you would talk some day.  I always knew."

Somewhere along the way, the dreams stopped.

I can't remember the last time I had a dream where my son talked to me.  They are distant recollections, sort of like the feeling I had after he was born: that my life was so close to perfect it seemed unfair.  Why me?  Why did I deserve such an easy road?  Why was my life so golden when the world is filled with so much that is unfair, evil and unthinkable.

I had a dream last night where I was trying to escape something dangerous.  I am not sure the dream-me even knew what it was.  But I had to get away.  I had Daniel with me, and I was trying so hard to make him understand the urgency.  I was trying to shield him, move him along quickly, and, at times, hide him.

Then I woke up.

I was struck by the irony.  The feeling of danger-- that feeling of fear -- that I had in my dream is part of my every-day.  It has to be -- because I am Daniel's mom.

I read the stories in the news of parents who have lost their children with autism.  Beautiful children -- inquisitive like all kids, even though they do not have the words to express it.  And in seconds -- the time it takes for a sibling to run from a bee, or a parent to take a bag from a car --they are gone, walking without words, and without an awareness of what might happen.  My heart aches for these parents because I know that their dreams, too, were replaced by feelings of fear -- feelings that they never let go of and then were forced to face in the worst possible way.

I never let go of my feeling of fear, and, yet, how many times has Daniel darted toward a water fountain in a crowd of people and I could not see him?  How many times do all of us take our eyes off our children, if only for seconds, and look up to not see them where we expect them to be.

Because my daughter is a "typical-kid" I live in two worlds.  I go to Girl Scout meetings and dance recitals and basketball practices with Olivia.  I listen to parents discuss things about kids, and I marvel at the inability of some parents to "get real"  --  the "problems" of which they speak wouldn't even register as a blip on my parenting radar.  They are not only insignificant in the grand scheme of life, they are frequently humorous.  These parents do not know my feeling of fear.

If I weren't such a social dynamite in great need of strong friendships, it would be enough to make me shun them all and lock my doors. Instead, I search for those parents who actually see my son, who notice his enthusiasm for life, his infectious grin and his gorgeous eye-lashes.  They are easy to identify in time.

They are the people who keep me from being consumed by my feelings of fear.

I doubt I will have any more dreams where Daniel talks to me.  It has just been so long since the last one, and other things have happened that shattered the feeling I once had of living the golden life (though I still have many reasons to be grateful).

It makes me sad, in a way, and, yet, is it not a sign that I am "getting real"?  The person I was several years ago -- the mother who cried herself to sleep, who could barely bring herself to say "the A word," who wondered how she could effectively parent a child who might never talk -- has done a lot of growing up.

I may never be able to completely let go of my feeling of fear, but I have made a place for it at the dinner table.

Hopefully, one day, my dreams will be much less about fear, and much more about a different kind of hope for my child.   In the interim, I will cling to the people who understand my fear, because they live it, and those who try to understand, because they are such darn good friends.  I will be thankful I have learned how to spot those who fall into these camps, and those who do not.  And I will try to focus on the courage of my son -- who is, by far, the bravest person I know -- when I start to feel overwhelmed by my feeling of fear.

April 18, 2013

Doing Right By Daniel

I have learned from Charlie that love doesn't always come from what you say.  It can also come from what you do.  And so we do right by Charlie.  We love Charlie strong We watch over him with the might of angels.  We have to.   

-- My Brother Charlie, by Holly Robinson Peete and Ryan Elizabeth Peete

This afternoon, I will speak to two classrooms of first-graders.  My daughter will be among these bright children, who are learning to read and write in not just one, but two languages.

I will do my best to explain to them about my son, who struggles to communicate at all.

I will try so hard to explain this mysterious beast known as autism, to help them understand that Daniel is much more like them than he is different, and to inspire them to do right by kids like Daniel.

My words to these kids is my way of doing right by Daniel, my way of trying to make up for my many failures. Because as much as I hate autism, as much as I wish my son was not affected by the disorder, it is Daniel's spirit -- his pure love for life in spite of his challenges -- that makes him the bravest person I have ever known.