Sunday, January 25, 2009


I ran into an old friend the other day when I was wandering, dazed, through a local outdoor shopping mall. I hate to admit it but aside from eating really, really good food (often cooked by The Husband, who is a chef) I actually get a lot of comfort from shopping. I don't buy a lot but I do like looking around. So, I was wandering around and heard behind me a very distinctive voice and when I turned, there she was. I hadn't seen her in years but had thought of her often. Her boy and Sophie had gone to preschool together almost ten years before. Her son had died, though, about seven or so years ago and while I can still remember the exact, horrible moment when I learned what had happened and then went to his funeral and stayed in close touch with her for a while, there came a time when I think she rightfully withdrew. She and her husband adopted two children and I thought about them all, often, and I thought, too of this cord connecting the two of us, a cord that really never broke. It just sort of stretched thin as we walked it, on our separate paths.

We hugged each other long that afternoon, and she told me that she was an avid reader of this blog. I feel that seeing her was symbolic because she reminded me of what is best in this often absurd world of parenting a special needs child. The bonds are so intense that they are really almost never broken and the ties that bind are stronger than personality and even, sometimes, culture. It is a blessed thing to know another whose path, if not similar to yours, at least understands it, completely. Hearing her voice, seeing her, after such a long time, gave me a renewed strength, but I'm not completely sure why.

She emailed me this in response to one of my recent posts:

The tight rope always extended and ready for you to take a walk. One side has to be the end to it all. There must be an end to it all. Not another drug or hormones or the wind blowing the wrong way. Not another night of sleeplessness and yearning for just one day free of seizures.

The quiet soul released of noisy seizures and daily anxieties.
And then, the moment you are yanked back with full force into the absurd, into the long future...

So beautiful, those words. It makes me think of the present and how those of us who meditate, those of us who spend time doing yoga or reading about mindfulness are intent or inclining ourselves, ever, to the present. And how difficult this is. To stay in the present. To live in the present. With my boys I remind myself to be present, to savor each moment, because it flees and they will grow up and beyond and I know that one day I will rue the moments that I wanted to pass. This is good. With Sophie, though, I live each day, trying not to think of the next, and the next and the next. Because that will bring worry and the future and who the hell knows what else. The present is not really the present, at least the present the moment that I experience with my boys.

I wonder if this is true for all of us who have our Sophies, our Roberts, our Omies, our Schuylers, our Morgans and Helenes and Luezas and Jakes and Indias and Micheles and Evans and all the other wondrous children in our tribe.

My friend wrote:
I always felt like I was living in a bipolar world where no one really understands what it is like to live only in the moment and never venture even for a minute to tomorrow.

The title of this post is Relief. Sophie has had some relief the past two days. She has woken up with light in her eyes and dry palms. She has a bit of spring, again, in her step and a smile for us.

Today is good, I think. All over again.


  1. I'm envious of your tribe. I think I need to make more of an effort to find moms of special needs kids in Pittsburgh.

    That Sophie has had some relieve for the past couple of days is wonderful to hear.

  2. I'm amazed that you managed to hook up with someone. Now that's something that I've never managed to do.
    Best wishes

  3. Only those "chance" meetings with long lost friends happen in the "todays" .... I think that must have been a relief too .... a friendship that is real ... and proven real "today"

  4. Wow. What a touching post about friendship, connection and unspoken bonds. Thank you.

  5. This was so beautiful. I am grateful you found this friend again. A true gift.

  6. I am sighing with relief at your easier days. Blessings on all of you.

  7. What a great post. I enjoyed reading the words from your friend. It is a comfort and a relief to meet/hear about others who also need, or are required, to live that moment-by-moment existence. Robert's health is more stable now, but I still feel perplexed about whether it's useful or even right to project our lives too far into the future. Staying in the present feels right.



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