Bobby's Tower

Today's SF Chronicle has four letters to the editor. Interestingly enough, my family is responsible for half of them. One is mine and one is from my cousin Mickey (Maureen). What are the chances of that?

Ok, to be honest,  knowing my family, it may not be that astronomical

 Both of us are moms of special needs kids, but the subjects of the letters are completely different. You can read the letters here: http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2012/05/29/EDKM1OP32O.DTL
I am ranting about cuts to California Children's Services, which I talked about in yesterday's post.  Mickey's letter is sweeter than mine, remembering her son Bobby who loved the Sutro Tower, which from here forward shall be known as Bobby's Tower (at least in this house).

My niece and I were talking about Bobby last evening as we entered AT&T park for the Giants game. Bobby worked for the Giants checking bags of people entering the stadium - and no one got anything past him. Not his friends, cousins or even his mom. He took that job seriously. I always think of him when I go to the game. Now I will also think of him whenever I see that tower, which is visible from many parts of the City, including my back deck,  if it isn't too foggy.

Read more about Mickey's son Bobby in these two posts. Maggie World: Re-defining Special and Maggie World: Thankful.

He was a great guy who loved life and he is sorely missed by all.

Thankful

This is the week we set aside to give thanks. I like to think I give thanks regularly, but it is good to have this designated time to reflect and remember all that we have to be thankful for.

I am thankful for many things. My family, immediate and extended, is something I am particularly grateful for. These people are a source of support and love for me. My life is centered around them and I have a great life because of them.

I had occasion to see many of the extended - extended family this weekend, cousins and their families, and I am grateful for the connection to so many people. As you get older, relationship with cousins takes a back seat to keeping up with siblings and nieces and nephews. In my family, it has to or the sheer number of people would overwhelm us all. There were 31 cousins in my generation and I cannot even tell you how many there are in the next generation or the one that is coming up behind that. We do not see each other often, other than chance meetings on the street. People talk about only seeing relatives at weddings and funerals. However, this family is so huge; we cannot include everyone at weddings, so it is mostly funerals.

This weekend it was Bobby, my cousin’s son, who died so suddenly last week. The services were lovely; the right blend of celebration of his life and sadness at his passing. And the place was packed, there were hundreds of people there. Bobby touched so many people in his short life; and he lived his life with a passion and exuberance that was contagious. His fiancé, parents, siblings, aunts, uncles, and cousins were devastated by losing him. But I think they were lifted up, a little bit, from the outpouring of affection for him, and the appreciation of his well lived life.

I participated in the services, as did many of my siblings and other cousins. I felt very close to all of them, even as I tried to keep the appropriate distance from those closest to Bobby to let them grieve together as his immediate family. Bobby’s grandparents all predeceased him, so my mom and her brother and sister represented that generation. The three of them walked out of the church arm in arm giving great respect to their late sister’s grandson. It was lovely to see, even though the occasion was sad. There were many bittersweet moments like that.

At a couple of points, I felt out of time, as though we were all little kids in Grandpa’s house on Christmas Eve over 40 years ago. (I’m not saying this makes sense and I cannot explain the gray hair or all these extraneous kids.) I knew, even with all the time that has passed, and the huge responsibilities we all have every single day, that these people are family and will support me if something happens to Maggie. And that is just “my side” of the family. Steve’s family is just the same, and there are a lot them too.

I do not want anything to happen to Maggie and I hope it will not. However, we live on a precipice. And losing a member of the family, especially Bobby, cannot help but raise fears. I can tell you this; it is powerful to know there are so many people out there who will stand beside me in time of crises.

I am thankful for my family..

Re-defining Special

Maggie is in special education. That term, "special ed", evokes different responses from people. There are still those who giggle, or tease; there are those who resent everything about it, finding it unnecessary and expensive; and there are those who cannot imagine life without it. As you may have guessed, I fall into the latter group.

Special ed is a relatively new concept. Before 1975, when congress passed the Education for Handicapped Children Act, kids with special needs either stayed home from school or were institutionalized. I graduated from high school in 1974. I would have been excluded from school if I had special needs.

Special ed is an ever-evolving concept. It changes and refines every year. It includes the most physically disabled, like Maggie, and the child who appears perfectly fine but cannot learn in the way most children do. It takes place in almost every school in special day classes and regular classes. It is not perfect but any means, but neither is typical education. It will take a few more generations to get rid of the bias and the concept of funds being “deviated” from regular ed. It will arrive in full when it is no longer considered “special education”, but just education. But that is a long way off.

The evolution of special ed and the services many children need was and is accomplished mainly through the outrage of parents and educators. Maggie’s state of the art program in San Francisco Unified exists because of parents, and mostly mothers, who could not get what their children needed 10 or 15 years earlier and made noise about it. My hat is off to them. And I hope I am doing my part for those kids who will follow Maggie.

One of those women is my cousin Mickey. Her oldest son Bobby was born in 1976 and had special needs. Mickey, as a mother and a teacher herself, kept fighting to get him what he needed. Because she is such a lovely person, she fought with the system rather than against it and made friends instead of enemies along the way. She relocated to an area that was more beneficial to Bobby’s education. And Bobby flourished. When I say flourished, I mean as a person, not as a person with special needs. Because of his mom and her ability to get his needs met, Bobby finished school, got a job and lived independently. He met a girl, fell in love and asked her to marry him.

He grabbed the brass ring.

What more do any of us want for our kids?

Bobby died last Friday at 32 years of age. I don’t know as I write this what took him, but I know he died in his own apartment watching ESPN, something he loved to do. The world is quieter and a lot less jovial now. Bobby was larger than life, in every respect. His personality was huge and filled every room he entered. He was the life of every party and every gathering. I will miss him and so will everyone who ever met him.

Thanks Bobby, and thanks to your mom Mickey, for making “special” so special.