about me about her

9.30.98

She had a stroke when she was born. A big one. We had about a day and a half of normal bliss as her parents. Then everything changed. A nurse had noticed some duskiness. Some tests were run.

Viv left the hospital without her baby in her arms. Amy had already been taken, lights and siren, to another hospital with a neonatal intensive care unit. There, doctors and nurses saved her life a few times over many days.

A blocked blood vessel in her brain left her spastic on her right side, with tight muscles, hypertonicity, they call it, and this has meant a lot of therapy and braces and paying attention to things that most parents never have to consider.

Cerebral palsy has left her developmentally delayed. Her speech is slower in progressing to the level held by typical kids her age. I suspect we’re going to make discoveries regarding her abilities that we don’t even have a clue about yet.

She’s seven years old and in second grade. This is good. Even though it’s a special education class, some of her day is spent with typical kids her age, so she reaps the benefits of concentration on her problems while at the same time enjoying some contact with regular schooling. Her mom and I are grateful and feel lucky about this when we look around and see other kids and parents who aren’t so fortunate. But this sense of good fortune doesn’t remove any of the profoundly disheartening elements of this experience, it just makes the experience bigger.

I’ve gone through a lot of trepidation about whether or not to tell you this. Keeping my need to talk about this in balance with my respect for her privacy has been a difficult process, a debate in which I can argue either side.

I have to take it on faith that I have the wherewithall to help in raising a daughter who'll be able to see herself as worthy of respect on all fronts, who will be able, with graceful dispatch, to dissolve any indignities flung her way. It's my duty as her father to balance respect for her privacy with the value of facing the importance of her uniqueness and its place in a public world.

I've had some long good talks about this with other fathers who have kids with special needs. There are no easy answers to the questions about disclosing what are normally private details regarding one's child. But this is not about her. This is about me, what I think and what I feel. The practice of honesty about the emotions that move through me has brought a certain calm to those deep places inside, and I have great respect for the power of a stable core. It has been the source of strength and courage when I've needed it.

It’s in my nature to be glib, particularly in a forum like this where humor and cleverness are looked upon with favor. But wit isn’t always the best currency for the exchange of truth, particularly when it comes to how I feel about my life, with all its anger and sorrow. To some extent, humor manages to disguise or deflect, and although I have great respect for it as a craft, it doesn’t always get me to the heart of the matter. There is a difference between description and expression; one is to paint, the other is to bleed, and sometimes bleeding is required for flushing out a wound.

I am surprised by how quickly an emotion regarding Amy can overwhelm me now. Intense waves of love or sadness or anger can wash over me at the drop of a cardboard Burger King crown. The negative ones are particularly sinister in their power to beguile, pulling up alongside me with an extra horse just begging for a fast ride through the thistles. I still mount up every once in a while, when the happiness has lasted long enough to numb my awareness of differences, and off we'll go for a tear-jerking romp through self-pity or loneliness or resentment. I go because I have to.

The truth is that joy and buoyancy and a confident driving sense of success in the face of doom live here too. Yep, we've got the whole schmear here on Rancho Suburbio. All the best treasure is buried deep on this land, and you have to dig in the dark sometimes to find those certain gems, the ones made under tremendous pressures over great stretches of time.

Today's Music:

"Just One Of Those Things" -- Louis Armstrong -- LOUIS ARMSTRONG - VERVE JAZZ MASTERS 1

Wisdom of the Day:

"Tender-handed stroke a nettle, And it stings you for your pains; Grasp it like a man of mettle, And it soft as silk remains."

- Aaron Hill, Verses Written on a Window in Scotland