I've never liked using terms like "passed away" or "passed" instead of died. I know lots of people, including my older daughter, much prefer those words, but I am a direct kind of person.
My oldest daughter is dead. She died 14 years ago today. She was 18.

I've written about her before, and I've tied our loss to the sufferings of others, I've tried to imagine her world view, what she would have cared about, what would have been meaningful to her. But I've left out something very important -- a major event in her life, in our lives, that shaped her personality, her talents and her perspective.

In the fall of 1986 we were a classic, somewhat traditional family. We had a six-year-old daughter and an almost 3-year-old son. I was a grad student and research assistant, my husband was a community psychiatrist.

Celia and Maury at Phyllis & Tony's, fall, 1986.
On Thanksgiving our sunny smiling son had a major stroke and was left with multiple severe disabilities. He was unable to walk or talk, he could barely swallow, his eyes were not always under his control. He had to be fed through a tube, he needed constant care and monitoring. He lost everything, although all higher brain functions were intact. But the receiving and sending of information was severely hampered. He was almost what is called "locked in."
Our daughter had been a highly social creature. If there was an afternoon without a friend over, that was an afternoon wasted in her opinion. Our house, with our wonderful babysitter who comes from a huge family and loves kids, was routinely full of children -- our own two, the other little boy who was also cared for by our babysitter, and various neighborhood kids who came to enjoy the fun and welcoming atmosphere in our home.
We went from that to silence, to mourning, to exhaustion and depression.
For a while she tried to have friends over, but the presence of her shell of a brother made her friends and her uncomfortable. She retreated into the isolation of her room.
She became a writer. Writing was her companion, her outlet, her method of survival.
Thankfully, we had another child, a wonderful little noisy funny girl and her presence in the family brought back laughter and joy. Our oldest daughter welcomed her little sister into the household with both love and relief.
When our poor poor little boy died in 1991, our oldest daughter gradually came out of her shell and embraced the world. By the end of high school she had a large and rowdy group of friends who would descend on our house like locusts, eat everything in sight and then sweep her along as they moved to the next house with food. She was happy, funny, outgoing. She was beautiful and well-liked. No more the sad, solitary child. But the habit of writing, of dealing with life through her words, never stopped. Her identity was a writer. And she wrote beautiful creative stories and poems, painting with words, using them in unusual ways that somehow reached people in the same way as music and visual arts.
I don't know what she would have become, but I know what she was. She was a word artist. Her brother's terrible illness inspired her writing. Her isolation developed and honed it. Her little sister helped her cope, and sadly, her brother's death allowed her to blossom.
This diary is dedicated to both of them. Their deaths, though 8 years apart, have anniversaries within a week of each other. This week.
Our little boy who loved anything mechanical, anything with buttons to push -- his brief life changed our perspective on life, changed my career and changed our priorities. Our oldest daughter with her longer life and amazing talent affected not only us but myriad friends and relatives. Her life and death carved a frieze of pain and appreciation into all of us.
This diary is also dedicated to the two wonderful daughters we have now -- both of them entering our lives because of what we lost, both shaped by tragedy (although different tragedies), and both of them amazing in completely different ways. We are incredibly lucky to have them, to love them and to be with them. And because of what we lost, we are constantly aware of how we should value our time with them and appreciate their many strengths and talents, their lively personalities and their boundless charm.
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