January 6, 2018

The last time I posted on this blog, I wrote about the disappearance of a dream -- a dream that most parents take for granted, the dream of being able to truly communicate with my son.

It has taken me this long -- roughly four and half years -- to revisit those words.

I never won the battle between hope and acceptance, never became comfortable with the idea of a disappearing dream.  And I am so glad.

Because now I no longer have to dream about what my son might say to me, if only he could.

I can simply ask him.

14 years is a very long time to go without words.  I can only try to imagine Daniel's frustration, but I could write a novel about a parent's heartbreak and worry.  I can tell you that never hearing the words "I love you" from a child is not even on the list of the 100 most painful things about seeing your kid go without a voice.

It is not knowing if he is in pain, and if so, what hurts.
It is not knowing if people are mean to him when I am not there.
It is not knowing the source of his sadness when tears spring from his eyes.
It is not knowing if there is something that would make him happy that I have failed to discover.

It is a feeling of absolute failure as a mom and the immeasurable fear about what his life will be like when I am no longer here.

But today, there is rejoicing in my home. My son has a voice.
It is not conventional.  It comes from his brain to his fingers, through a keyboard and a voice-output program on his I-pad.

It is the most wonderfully enchanting voice I have ever heard.

Today, I could write volumes about how my son has found, and is continuing to find, his voice.

I could write about the speech therapist -- the only professional out of a boatload who really "got" my son -- who first told me, years ago, that he could read a lot of words.

I could write about the struggle it was for him learning to type,
how he does not have the fine-motor dexterity to write a single word,
how we were never sure exactly how much he understood when we spoke to him -- though we always knew he understood much more than he readily demonstrated.

I could write about my own struggles -- how many times I backed off and temporarily "gave up."

But I never really could get comfortable with the idea of disappearing dreams for my son.

And here we are.
Every day is such a gift.
Every word, every sentence, every beautiful peek into what I know now is an absolutely magnificent mind.
It is almost dream-like, this new reality we find ourselves in.

With Daniel's blessing, just given to me after I tearfully read all the above to him, I will share some of our rejoicing with you.

-- Leah  

1 comment:

  1. I'm so excited to read and hear all the new discoveries as you embark on this long awaited journey! You have never been a failure, but I can only imagine how helpless you must have felt and it's true...we take so much for granted. Lots of love!