going places

The weather has been glorious this week. It’s springtime and the trees are magically blooming, at least it feels magical, that the little park near our house with its dozen or so cherry trees by the playground are all abloom. Yet the trees so quickly change, in the course of the last week the magnolia and cherry petals are appearing on the ground, and soon will outnumber the ones on the trees. How important to revel in each day’s bounty and beauty while we can, to realize how ephemeral and precious it is. Soon these trees I gaze at each day will be bare. But then other flowers will emerge. You just have to wait for what is next and trust that it too can have something lovely to offer.

I’m trying to cultivate that trust in other areas of life. We just had another meeting about V’s new house, and it looks like he may move in as soon as next month, though more likely early June. Stil, that’s really soon! V moving is absolutely huge and as much as I’ve been saying I am ready I have enormous fear about what it will be like for him. For all the mess and disorganization and to do lists yet to be done this house is filled with love. I gave birth to him twenty two years ago and he has been with me ever since. A move is always a big deal but for someone who has never left home for more than a week of overnight camp a move into another house is such a major life change.

I do feel ready, and more importantly, that he is ready, and yet I am scared, with the same questions I’ve been asking these last few years as we’ve worked on a plan for his future. Will he be loved? Will he be given the attention he needs and deserves? Next year at this time on a bright blue morning in spring what will it be like? Will they let him sleep in like we do? Will he wake up to people who are happy to see him? Will he go for long walks in a beautiful park, like we do now? What will his life be like?


Pardon me for repeating myself, it’s hard to stop the ruminations. I’ve had the same dreams and fears for a long time. Although V has done well at the respite house, we always came back for him. This will be a permanent change. I will wake up and not have to think about getting him up and bathed and dressed and feeding him and taking him out, as the days are long, spending the rest of the time in the house hoping that I can keep in good spirits on a major holiday like Easter when there is no school or day program or structure and the beauty outside isn’t enough to sustain me, as much as I wish it was.

At the seder I attended a friend of my sister-in-law, who took a few books of my father’s when we were trying to find his things a home, found a postcard in one of them that was jointly written by me and my BFF S when we went to the Falls de Iguazu. On the border of Argentina and Brazil, they make up the largest waterfall system in the world, much bigger than Niagra Falls. In my twenties when we traveled there I remember thinking that it was amazing but did I realize how amazing my freedom was? That I flew from NYC to Buenos Aires and then spent a couple of weeks in that exquisite city, with an eleven hour trip on a bus ride up to what is considered one of the great wonders of the world? My life has gone from endlessly expansive to familiar and hermetic. The same walks everyday. The same challenges. The same breakfast, except during Passover when I don’t eat toast.

When B was six months old we went to Paris. (A friend with an Egyptian husband encouraged us to travel before he could crawl. Good advice.) A year later a friend from Italy – who I had met on a silent meditation retreat and afterwards, invited her to stay in my little studio apartment in New York until she flew back home –  very generously gave us her apartment in Rome for a week. Both trips were wonderful and I thought there would be lots more traveling with my family. But after V was diagnosed with autism, the traveling stopped. We went to Seattle every year to visit family but that was it. And even that was difficult – the waits at crowded airports, the long plane rides where he had to stay in his seat, it was at times excruciatingly hard.  No, there would be no exploring the world as a family.

Travel, like lots of things, would have to wait. And that wait will soon be over. What will life be like without V in our home? I expect that at least for the first few months I will be anxious, that T will likely call the house manager often to see how he is doing.  My gut tells me he will do fine yet my heart is not there yet. How will he fare without his adoring parents? I will stay close to home at first, visiting him a couple of times a week but then what? I can travel, I can spend all day on writing projects and streamlining the house  I’m in my sixties, when some people retire from jobs, when they start anew. What will retiring from caregiving feel like? Quite honestly I feel resentful of all the precious time I’ve spent at this job, how it’s taken me from other things I love and care about. Yet I do not resent V. He is who he is and we’ve learned to accept and love him.

And that is what I hope that he will have in his future. Love and acceptance. It’s what we all want, it’s how we thrive. To have people in our lives who really see us and appreciate us for who and what we are, foibles and all. I’m trying to trust in the future, that like this lovely season new blooms are just around the bend.

2 thoughts on “going places

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