Tuesday, November 15, 2011

Special Needs

I got back to work three weeks ago. Because of scheduling difficulties and because he is now in a day care,  I haven't yet gotten to see one of the boys I work with. Today I called his mother and asked how he is.
"Really good," she said. This weekend he ate a whole bowl of food by himself'. I heard the delight in her voice. "Did he use his fingers"? I asked her. "What did he eat?"
"He ate our food with us. I cut up some pasta and some fish and some vegetables and put it in a bowl. He ate all of it, using his fingers. He picked up the pieces and put them in the side of his mouth and chewed them up and swallowed them. He ate all of it!"
He is two years and three months old, and until now, he will only accept soft food. He doesn't put his fingers in the food or bring anything to his mouth. Any bit not acceptable to him he spits out. I was thrilled and delighted with her news. I will see him tomorrow.
No one who is not involved in the care of a child with special needs can imagine the joy, relief, and delight one feels when they do something that typically developing children just do automatically. Two weeks ago I watched in unmitigated joy as my little cousin of ten months sat in her high chair, grabbed the pears, the bread, the pieces of cheese, and everything, in fact, that was offered to her. She got the food to her mouth and chewed and swallowed and ate some more - a two-fisted little eater obviously enchanted with her food. After finishing every last morsel she was removed from her chair, and then showing good fine motor development she picked up the crumbs from the floor. An efficient little vacuum. Finally content with having done a thorough cleaning job she stood up, smiled, and sat down. She had our undivided attention so she performed this remarkable trick a few times .
How miraculous when everything works as it should, a superb intricate enmeshment of different systems working in unison in a little being.
I returned to the news that one of the boys with whom I had worked had died. He was two and a half years old. In his case, it was probably better for him, he suffered from microcephaly, he was blind, and deaf, and had to be fed through a g-tube. At the same time he responded to his parents' voices and presence, he interacted with his environment, touching objects with different textures. He loved music and responded to it by smiling. His parents and sister were devoted to his care. They are devastated. All I could do was tell his mother how very sorry I am, and what a good parent she was, and that she took wonderful care of him. She was so upset that maybe she had done something wrong to cause his death, by not giving him enough medication, or by giving him too much medication, or maybe she gave him water incorrectly, or kept his room too warm or too cold.
"No, no, no, you did nothing wrong at all." How can one console grieving parents? I would never say "it is for the best." All I can do is listen to them, and show I care.
It is not always easy.

Sunday, November 13, 2011

Catch Up

Phew. As ever much happening. Externally, internally. The internal things are harder to write about because they occur in a place beyond words, as brief flashes of insight or understanding during a yoga pose or while I am waiting at a red light, or getting onto BART. I did carry a notebook around with me but in the interests of lightening my load, so to speak, (my handbag) I threw things out, like a tin of peppermints, my notebook, some of my numerous chapsticks and lipsticks. Now I am reading Joan Didion who writes how she and her late husband always kept cards with them on which they would write Oh well, I am neither one of them nor do I write like them.
Since my return I have been catching up with friends, family, evaluations at work,  reading, buying items to pursue my crafts like beading and knitting, and so on.
A most delightful event was seeing William and Olga, my beloved former neighbours, who flew the coop and went to live in Salina, Kansas. I could write endlessly about them, and in fact, at some time I may. Suffice to say we spent a few wonderful hours together, over a really good meal and a hike at Albany Bulb. Then today my friend's son, whom I last saw in New Orleans, came to town for a couple of hours.
Tomorrow I drive down the Peninsula to visit someone very dear to me. She  has a really rare form of cancer and is on hospice now.  I wish she lived closer. Besides being from South Africa, and married to someone who is a member of the family, she worked in early intervention. We have always had a lot in common. She is a wife and a mother and is a warm, loving, nurturing being.  The world is a richer place for having her in it.
Yesterday I was at a get together for a daughter of my friend. She died of a brain tumor in December. These fleeting lives and passing of special people just serve to remind me how grateful we should be for each and every moment. I do try.