learning to navigate the world, j-bear style

The Pain of Perspective

It is not like J getting older is something that happened abruptly overnight. That’s the tricky thing about time, pain in the rear though it may be – it keeps going even though we want it to stop.

The way he communicates and interacts sometimes, I can easily lose track of the fact that he is not a large toddler but instead an only slightly big preschooler. There are so many days I spend with him alone that when I am either out and about alone and run across other children or see him alongside “typical” peers it has gotten to the point that it startles me.

Before I go further I must add a disclaimer, especially for my stepmother and stepsister should they read this: The little children I am about to speak of, like your beloved G, are spots of bright light in my life, even if they’re as fleeting as fireflies to me. They are amazing little people in their very individual ways and I never lose sight of that, especially in the case of your hilarious little man.

That said, I had an experience at the grocery store that kind of struck me dumb. There was this precious girl in a shopping cart pushed by her father. She had to be around two years old, maybe a little less. Her brother, who looked three or four, trotted alongside the cart. She was just a little beauty of a person, charming in every sense, but when I heard her speak so clearly and concisely to her father my heart stopped. She kept saying it, too. “Daddy? Daddy? Daddy?” And she pointed, and she chatted, and she laughed…

Despite her beauty, despite her sweet manner, I had to hurry away from the aisle I was in when I crossed their path. My heart was in my throat and I didn’t know what to do. 

I am grateful to all I hold holy for all the good in my son. I know his strengths. I know his weaknesses, too. 

He’s never addressed anyone with purpose. Only once has he said “mama”, and though he looked so clearly at me when he said it, it’s a phenomenon that has yet to be repeated. He says a lot of words, most mimicked as a parrot would, but people have no names that he uses. Picture recognition? We have it down pat. Labelling of familiar objects? We’re getting there too. Names? Emotions? Desires? I’ll get back to you.

And it hurts in a way that is hard to put into words. On one hand, I begrudge no other child any of their skills and strengths. How stupid would that be?! Every child has the things they excel at and their own method of moving through this world. On the other hand, the stark reminders of where my son falls; the glaring evidence of where he’s struggling and falling behind… It breaks my heart. It scares me. It makes me want to tuck him away and protect him from the very world I am so eager to help him to know.

These aren’t places I can stay for long, these dark holes of “why” and “what if”, but when I visit I cannot help but spend some time mulling over the pain and sadness. It would be a lie for me to say I did not want the magic band aid, the amazing cure-all answer to my son’s autism that would magically allow him to interact with the world with little impediment but that’s not there. That’s not how he’s wired. And that’s okay.

Or, at least, it will be because we will make it work and make it be so.

1 Comment

  1. anne rossetti (mary's sister)

    I am reading your posts between sobs – we had a bad experience with an oncologist yesterday – she seemed intent on making Kate realize that, although five years have passed, she may still have a recurrence, and that that recurrence would constitute metastatic disease. Kate gets it; she doesn’t need to be constantly hit over the head with it – shouldn’t an oncologist have some degree of compassion? Like you, I certainly don;t begrudge any of the young women I see who are going about their lives, planning their families and living typical lives – but it still hurts.

    I am taking your last line with me today when I go in to see her ” it will be okay because we will make it work and make it be so”
    . Thank you. Sometimes I think you are an angel sent to me

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