Tag - epiphany

Here, on the Sound
A Magnificent Boy

Here, on the Sound

Life is not always rosy but when you’re on vacation and your child does not bolt at every opportunity but instead turns when you call his name and miraculously, comes running — well, life is pretty damn picturesque. This means that going to the beach isn’t just one big exasperating John-chase. You can sit and take in the sand and surf and appreciate how magnificent it all is.

Last year, John took a cast of Sesame Street characters everywhere he went. It was a struggle to find a bag to contain them all. In that regard, we are fortunate this summer because he has one lone traveling companion: an Elmo finger puppet. They have lots of private conversations.

We are at the beach visiting my dad — their Grampy. It’s a miracle he’s here at all. Six weeks ago he went to the doctor complaining of allergies and ended up on the table having sextuple bypass surgery. Who has ever heard of more than five? He is so lucky, they said, it was only a matter of time, they said.

The truth is, we are so lucky.

I try not to think of my mortality or the mortality of those I hold close and dear — you do this especially if you’re a parent to a child with special needs — but sometimes the river comes rushing to meet you. As we waited for the news that my dad was in the clear, I thought of all the times I’ve moaned and groaned about our busy crazy life — how hard it is sometimes. And it is hard.

But I’d rather the difficult, the challenging, the frustrating, if it means I get moments like this with my family and my kids and my husband. I’d rather the life hard won as long as the people I love are here by my side. My dad has always been by mine.

Our days are still full of tough moments, no doubt! But here, on the Sound, we are just happy to be alive.

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A Magnificent Boy

He runs like a gust of wind, fast and brisk. Every now and then, he looks back to see if I’m still following. Of course I am, I’ve been chasing him for years. At last his hand is within my reach and I grab it, hold on tight. Any other time I would put the brakes to his elopement but I see his face and it radiates such pure joy, I allow him to pull me along.

And so we run.

We run hand in hand as the wind whips through our hair. Even though it is night and even though we are surrounded by crowds at a football game, I feel everything still into this perfect moment: me and my boy flying through space. I am part of his world in this moment. When he looks up at me, it’s as if in slow motion, his face a breathtaking picture of contentment, mischief and love. His face tells me more about what he’s feeling than any words could.

I feel the same desperate love lurch from my body as I did the day he was born and they gave him and his brother to me to hold. It’s so brutal and exquisite all at the same time.

I think of this as I read the results of his neuropsych evaluation, a report so stark, so black and white, I throw it across the room. I am knocked down by its coldness and surprised that my grief lies dormant so close to the surface. The sobs I hear, the sobs I cry are so violent — am I still grieving?

Expressive and receptive language skills roughly equivalent to those of a 2-year-old child; daily living skills…a 1-year, 10-month to 2-year, 5-month-old child; socialization skills…an 8-month-old to 1-year, 4-month-old child.

The gap widens the older he becomes.

I remind myself this is just another moment in time, a day in which John was at the tail-end of a strep infection. I remind myself that it is hard to test someone with John’s unique verbal challenges and that just like receiving that first diagnosis, he is still the same boy. I tell myself that I’m not a failure as his mom, as his primary teacher. It is what it is. And he’s a happy child, an amazing boy with abilities to be discovered over time. He is not this report. My grief lies in seeing anyone dare sum him up this way. Why oh why must he be summed up at all?

I remember chasing him across the football field and then how we ran together. I think of all the moments he reveals himself to us, moments of stunning technicolor, his soul bare for all to witness. What if I could gather all these moments, like a cup of jewels, and write my own report. I would start with: A gust of wind, a magnificent boy.

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