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Tales Of An Educated Debutante

on life, loss and the joy that rules the day.


 
 
 
 
 




 
The future is far away and scary, but today is lovely.

Adrian H. Wood, PhD


The Beauty of Waiting

The Beauty of Waiting

Saturday, July 02, 2016 Adrian Wood Comments (0)

 

Someone told me once that waiting is not a passive action but can be active in itself. Waiting. Wait and see, they say. Just you wait, I have heard a zillion times. Patience is a virtue, echoes in my annoyed brain. Let's wait, my husband says to my anxious heart. It seems everyone but me recognizes the beauty in waiting. I am left perplexed and feeling lazy. My history with waiting has never spawned good results, at least for the things that seem really important.

That's not really true though as perhaps I don't remember when the waiting ended positively as what was there to remember? Things turned out okay and I moved on, I guess. My son that struggled with reading in Kindergarten made straight A's this past year. My daughter finally learned to poop on the potty even though she was five years old. Another son finally relinquished his pacifier even though he had started school. My baby did learn how to walk at nearly two. All's well that ends well.

Waiting it seems can be a lovely philosophy but not always applicable to a child with special needs. The someone that shared that philosophy with me was a well known oral surgeon at Duke Hospital. I had taken my Amos there for yet another evaluation to try to diagnose WHY he has been unable to speak, when we see him trying so hard. We set off on the journey to hope we may get some answers regarding his soft palate, possible Velopharyngeal insufficiency, the tongue that couldn't move. Anything, a shot in the dark but there must be some explanation. Two year olds should be able to say a simple, "da-da." And so, we made the arrangements, sitters, carpool switches and headed to the clinic a few hours away.

"Waiting is not passive but can be active, too," he said, after declaring Amos perfectly fine from his viewpoint even though he had received a sharp bite. Perhaps something later would show up but there was no way to know now so he ushered us to meet with a team of speech therapists and they hemmed and hawed and offered their best strategies and were quick to point out he had major motor planning issues, observed as he walks a bit drunk. What that meant, I did not wonder until later. It was the same old, same old too. Instructions, suggestions, observations and we left feel dejected with a few new ideas to try and we went home to wait. Waiting is active, I told the self that bucked against this advice. I had been wrong before and so I would wait.

Fast forward three more months of waiting and my gut said, keep looking. My speech therapists looked for ways to point out positive progress each week, four times a week, as we subjected Amos to intensive oral motor therapy and he tried so hard but still, no "da-da." What now, I thought to myself. My writing had prompted far away people to reach out and offered suggestions, names and numbers of the very best. One morning I started calling and emailing and then over the week, I began sending videos of Amos.

I caught a few fish but again, I had to decided which one was best for us and so, travel plans were made reluctantly to see a specialist in Connecticut. I wavered in this decision, due to expense, time of year, and thinking it would be the end of the road. Certainly, I would hear you are doing everything you can but I'm sorry, there's nothing else we can do right now. Go home and wait, I heard echoing in mind, the mind of a mother who was too pushy, exasperating, impatient with the process. I was wrong.

The waiting is beautiful today, though I still pace awkwardly and nervously in my own thoughts. In six weeks, we will go to have a posterior tongue tie release and until then, we will wait on the therapy that had no chance of offering Amos language due to the tongue that is hinged down and can not move at all. Rarely diagnosed due to ignorance of physicians and so, I share this story. Don't be patient when your mind screams no. After the surgery, we will wait again, prayerful and thankful, and hopeful that the words will soon follow. And if they don't? We will continue on the journey with the son and brother whose life is worth infinitely more than his abilities, simply because he is.

 

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