Tuesday, October 30, 2012

A dream discarded

When I graduated from my BA program, my dream was to become a book editor. There was at least one problem with that dream, however--I really did not want to live in New York City. No offense intended to New Yorkers: your city is an amazing place. However, being a book editor in New York, I discovered, generally means being poor in New York, and being poor in New York has enough disadvantages that for me they outweighed the attractions of that fair city.

If you want to be a book editor and you don't want to live in New York City, you need to be prepared for the fact that you are not alone. On the rare occasion when an editor job opens up for a university or local publisher, the applicants will be myriad. So that dream of mine died on the vine, and I moved on.

As my life and my career rolled on, I didn't think about my would-be career that often. I edited a few books in my roles of  newspaper section editor, grad student, and freelancer. It's great work, and I am grateful when I have the opportunity to do it.

I suppose, though, that I should be grateful that I did not have my "dream job" as a book editor when I got my son's autism diagnosis, because I probably would have lost it. The demands of caring for my children would have taken precedence over a demanding career. Instead, I've been able to keep my career because I work for an exceptionally flexible company. And every once in a while I get to edit a book for them.

I am reminded of this today because I had a little misunderstanding last week, and I thought I had an opportunity, through my current employer, to work for a publisher on a regular basis. Looking back, I suspect that my mind may have filled in some blanks from a bad connection with things it wanted to hear. It turned out that the opportunity was different--good editing work, but not book editing.

This experience has made me reflect on hopes and dreams. If you have a child with a disability, you know the pain of having to discard the dreams you had for that child. I don't mean that as an insult to our children in any way--they are wonderful, enlightening people who have fascinating futures. Dreams are one of parents' indulgences. They are luxuries fed by the tremendous potential that children represent. Parents of kids with special needs discover quickly that those indulgences are unfair to their children and that acceptance is the generous alternative.

Still, we are all dreamers. We dream about what we want to be when we grow up. We dream about finding the perfect love. And more often than not, we all get disappointed.

I have given up on dreams. It sounds so sad and cruel to say. But most of the time I don't think about this reality with anger, just acceptance.

Instead, I leave myself open to serendipity.

While dreams rarely come true, that doesn't mean the world is not full of magic. It's full of magic that we don't expect--the moment during an October afternoon when a brilliant blue sky breaks through gravid gray and white clouds, and the sun lights up the red and yellow leaves.

We had a moment like that a few weeks ago. It was fall break, and the kids, especially our son, were grouchy from being cooped up at home. We went for a walk to one of my favorite parks--one of its trails leads up onto the mountainside where it connects with the Bonneville Shoreline Trail. My husband chased my daughter, who had decided to run ahead, and I walked with my son. We caught up with them at a bench underneath an enormous scrub oak tree. The ground was littered with shiny brown acorns, which my daughter was collecting in her hands. The four of us sat on the bench, looking out at the splendid view, surrounded by the peace of the mountains. It was magical.

In the place in my heart where dreams once grew, I collect memories like this. And I wait to gather new ones.

Tuesday, October 9, 2012

Dear Mr. Stubbs (an open letter)

Dear Mr. Stubbs:

As I write this letter at 10 PM, my son is screaming. He's making wordless, tortured sounds like a wounded animal. We don't know what is wrong—he can't tell us—but we believe that he's disoriented because of the medication he takes in order to go to sleep. That's our best guess because this happens fairly often. The medication makes him fall asleep consistently, but some nights seem to be very hard on him.

I'm writing to you tonight because my husband Mike has mentioned that you and he don't see eye to eye on certain things, which is understandable, but he mentioned that you called him "selfish." Mike has many flaws along with many wonderful qualities; selfishness is not one of his flaws. Indeed, he is an extremely generous, selfless person. I would like help you, his supervisor, see what I see.

I understand that you have to make hundreds of decisions every day. While the decisions you make about scheduling and workloads often impact me directly, I understand that you have to make the best decisions based on many factors, and my family's health and happiness is only one of them.

Still, I want you to understand that when Mike advocates for his day to end as soon as he can make it end, he isn't just advocating for himself. He's advocating for me, because it's very difficult for one adult to cook and serve a meal to two non-verbal children, one of whom hates to sit down for a meal. He's advocating for his son, who gets anxious when his father gets home late, even though the only way he can express his anxiety is with screaming or hitting. He's advocating for his daughter, who adores playing with her father, and who sometimes gets sidelined when her brother's needs take too much of one parent's attention.

My son has stopped screaming now. It's 10:15 PM and it's finally quiet. We'll be heading to bed soon so that Mike can be up and ready to give his best to his job, as he does every day, before he comes home to give what's left to his family.

I don't expect this letter to change your decisions as a supervisor, but I hope that it will help you understand why you sometimes get pushback from Mike. He's not being selfish—he's just trying to give his family what we need.