Thursday, February 4, 2016

Same song, new lyrics

I have a big birthday coming up. One with a zero after it. Those always give one pause.

How can I be this old when I don't feel any different than I did in college? OK, the knees and back are a little slower and there's definitely more of me to love, but inside I'm exactly the same. So many years and experiences under the belt, but I don't feel any older.  I still marvel at the fact that I have children, but they are no longer children. It's hard to reconcile.

My friends feel the same way. I have several close friends that I grew up with and we are all facing the same big birthday, yet we go out and laugh ourselves silly about the same things we laughed about decades ago.   Exactly the same things.  And they are still funny. 

When you have lifelong friends they know all your secrets. There's no BS. They can pull up some obscure moment from your past in every detail and have you in stitches in no time. 

In 1980 - yes 36 years ago - I went to Europe with my friend Nonie and my sister Kate. We spent weeks traveling around with our backpacks sleeping on trains and having a great time. When we were in Salzburg, Austria we took a "Sound of Music" tour. It was something Nonie really wanted to do and of course we went along.  It turned out to be one of the most memorable and most hilarious days of my life. This is partly because it was the morning after a late night at a local beer garden. We were seriously hung over but rather than fumble our way through it, we decided to fully embrace this tour. It was small, just the three of us, a guide and a Japanese man who sold Harpsichords. Of course we named him Lurch. He excitedly told us he saw the movie seven times (and this is before the days of vcrs and dvds). That started us laughing and we never stopped. Lurch laughed right along with us. 

We went to the house and grounds the Von Trapp Family lived in the movie. It was beautiful, of course and we had to reenact the scene in the Gazebo where Liesl and her soon-to-be-Nazi boyfriend sang "I am 16 going on 17."  It was hilarious and ridiculous and I know given the chance I would do the same thing again.  

I may have aged, but I have not matured. 

I tell you that story simply so I can share this photograph that I received in the mail the other day. Nonie sent it in anticipation of my big birthday. That's me in Salzburg in 1980 doing my impression of Liesl.   The caption is more recent. 



The lyrics have changed, but the song remains the same.



Wednesday, February 3, 2016

Weird Dreams

I had one of those dreams last night. You know the type. You are trying and trying to get somewhere or get to something and no matter what you cannot get there. Last night it was a bus at the top of a very steep hill. I was slogging up the hill so so slowly and would get pulled off the street to do various tasks. I would hurry through those only to found myself back on the hill trying to get to the top in super slow motion.

I suppose that means I am searching for unattainable goals or something. Shrug. Who knows. Who really cares. I can tell you for sure that when I have these dreams I wake up more tired than I was before I went to bed.

But last night was different. On one of my many attempts to get up the hill a woman (whom I have  known since the 5th grade) appeared and asked why I had to get to that bus.  I could not answer her. She suggested I take a different road because Maggie was waiting for me. I ran down the other road that was flat and easy to travel and started running fast, so excited to find Maggie.

Then I woke up.

And she was still gone.

And I was so sad all over again.

But I can't quite shake it. I was working so hard to get something I didn't really want or need when, at least in my dream,  something I really wanted was - or seemed to be - so much easier to get. And what is the significance of my childhood friend's sudden appearance. Someone is trying to tell me something? Something or someone from my past will lead me where I want to go? But reality may prevent me from getting it?

Maggie is actually not in my dreams very often. Perhaps because she is constantly on my mind, my sub conscious gives me a break. When she is there, she is smiling and happy and I take comfort in that.

I loved the feeling I had in the dream when I was running toward where she was.  And hated the feeling when I awoke.

Friday, January 22, 2016

Sad week in Maggie's World

There's nothing like that somber phone call telling you someone you know has passed away. The only thing worse is to get it two days in a row. It's been a very tough week in Maggie's world.

Yesterday I heard about Nadine. She was Tyre's mom and she and Maggie were fast friends. Nadine always called Maggie the Single Girl, because Maggie would go nuts whenever that Beyonce song was played (and it was played A LOT). Nadine was a force of nature. I met her shortly after Maggie was born. Everybody knew her. She was completely devoted to Tyre and all his friends and threw the very best parties. I last saw her in October when she had a celebration of Tyre's life on the anniversary of his passing. She had gifts for every single person there and announced them in an academy awards style. I believe I tied for Mom of best female friend of Tyre. She gave me a red scarf and I'm gong to wear it today in her honor. It's only right, Nadine was always dressed to the nines. I like to think she and Tyre are together again. They were as close as two people can be, and while her two other kids and grand kids have my total sympathy, there is something about Nadine and Tyre together that feels like it's going to be ok.

Here she is at Maggie's Mardi Gras Party wearing a Maggie mask and at the hospital when we went to visit Tyre who was stuck in there on prom night.






And then this morning another call. This time it was Robert. Robert was one of Maggie's classmates from Junior High through High school and those transition years beyond. They had a ton of fun together and loved to cause trouble. That would make everybody laugh, even the teachers who tried to maintain order. Robert was a charmer and loved to laugh with the rest of the kids. My heart is breaking for his parents and brother Tony.


This is the hardest part about Maggie's World. So many have shorter lives than they should. Of course that's why their lives shine so bright - they're like comets streaking through life. But those of us who are just mere stars in the sky certainly miss their brightness when they're gone.

I have a feeling there is quite a reunion of the Aptos Middle School and Mission High school Italc class. Maggie and Tyre were there to greet Nadine and Robert. Nadine already has the party started.

Monday, January 4, 2016

New Year, New Endeavor



Happy New Year to you all.

 I am taking 2016 by storm. After a few months of preparation I am ready to start the new year with a brand new business. Golden Gate Independence Advocates is on the launchpad and ready to begin.

When Maggie passed away, I not only lost my daughter, but I lost my entire way of life. I spent her entire life managing her very complicated care. I had to deal with not only with my grief, but also had to reinvent my life. Either situation is difficult. Both together are crippling.

Initially I returned to UCSF Benioff Childrens' Hospital as a Parent Liaison helping other parents of hospitalized children navigate the hospital. That was okay for a while and really helped me get my feet back underneath me. I enjoyed it,  but the hospital could not give me enough hours or responsibility to make it worthwhile for me. I left there in April determined to find a job that would marry my professional training as an attorney with my personal experience being a health advocate for a person who could not advocate for herself.

I assumed that would be easy; in fact I got an interview for a good position almost immediately but that didn't pan out. Neither did the next thing. It wasn't easy at all. I was not getting the interviews or offers for the positions I wanted and was being invited to interview for positions that either did not interest me or could not pay me appropriately.  To be honest, my personal experience doesn't quite translate to a resume very well. One woman suggested I put Maggie on my resume, which was not bad advice, but I simply could not bring myself to do that.

After a while I had to reevaluate what I was doing and how I was going about it. Yes, I want to be paid and will not consider too low of a rate, but money is not the driving force. I need flexibility and independence; I have obligations in the world that I want to continue to honor and cannot be tied to a low paying 9 to 5 job. I realized that the only way to accomplish that was to do something on my own.

So I did.

My thought was to offer medical advocacy and benefit management services to those who need it focusing mostly on seniors. My sister Joni suggested widening that to include day to day errands, pet care and many other services that can help people stay independent. So I did. And Golden Gate Independence Advocates (GGIA) was born.

I am excited to be doing something to meet a growing need in our community and happy to be moving myself forward on my own terms. Doing this kind of work honors all my years with Maggie as well as my professional experience.

Check out www.goldengateadvocates.com and let us know if someone you know in San Francisco or Marin County can use our help.






Wednesday, December 30, 2015

A great Noel

One of the perks of writing a blog is getting to know so many people from all around the country. I have made lovely connections with many other parents or siblings of disabled individuals or just people who read these stories. The connections are strong, even though I have never actually met many of them in person.

One such connection is Tamara in Alberta, Canada. Tamara's daughter Noel and Maggie had a lot of things in common. Both were disabled girls who were the center of their mothers lives and, sadly, both passed away far too young. Noel left us about six months or so before Maggie did. She was only about 16. Because of the similarities in their lives and our grief, Tamara and I have really connected - yet we've never been within 1000 miles of each other.  Some connections don't require face to face interaction.

One day in November I received a package. I hadn't ordered anything and it wasn't my birthday. What could it be? When I opened it I found this.

Tamara sent some people a pink cup with Noel's name on it because it would have been Noel's 18th birthday. She wanted to know that people would be thinking of her daughter on her birthday. I think it was a fantastic idea and I may do something similar in March. Even if they're gone, our girls are worth celebrating and what better day than the birthday.

Fast forward to Christmas Eve dinner. With all the hustle and bustle, I forgot to buy straws for my father in law. It's easier for him to drink through a straw and we were completely out. I simply pulled out the Noel cup with the built in straw and put his drink in that. Problem solved!

My sister in law was sitting next to my father in law and I heard her say, "Look Ed, it's a special Christmas cup. It says Noel." I just smiled to myself. How fitting that Noel saved Christmas dinner.

Thanks Noel. Thanks, Tamara

Saturday, December 19, 2015

Those four little words

On this Saturday before Christmas. I went downtown to see Union Square, the Macy's windows and all the other decorations. I was with my sister Mary and we were not trying to buy anything, we were just enjoying the Holiday energy all around us. We walked over to the Westfield Mall to get a look at the dome from the old Emporium store remembering it from our childhood.

As we approached the dome, I heard a woman ask a question from my right side. I didn't even see her because I was looking at Mary who was off to my left. But I heard four little words that I haven't heard in so many months and knew she was talking to me. She asked,

 "Are you Maggie's mom?"   

I turned and looked at her, she was smiling and friendly looking and looked like any number of women I know. but I didn't recognize her. I simply said,  "Yes, I am. Do I know you?" She introduced herself to me as a reader of this blog and recognized me from the pictures?!?!?! Her name is Marilyn and I cannot begin to tell you how much she made my day. I am always glad to know people are reading this, but to hear that question again was amazing. (And my sister thinks I'm famous!)

In my many years on this planet, I've been many things, daughter, sister, friend, niece, aunt, godmother, wife, mother, lawyer, chief cook and bottle washer and so many other things. The one role that defines me above all others, though is being "Maggie's Mom."  

This does not in any way diminish my role as mom to Eddie and Tim, and they know that. People don't address me as "Eddie's mom" or "Tim's mom"; but being "Maggie's Mom" is something else. It describes a role I had to invent and reinvent over and over again. It describes the hardest and best job I ever had and one the I miss every single day.

At an event last year I was being introduced someone that I knew before but didn't remember from where. The person introducing us wasn't helping us make the connection and we fumbled through the first part of the conversation.  When I realized who she was I said, "Oh, I remember you, I'm Maggie's mom." And THEN she knew who I was. The person making the connection said, "Oh, I wasn't sure if I could still call you that." I didn't say anything at the time, but I'm not gonna lie, that one hurt a bit. I simply said "that doesn't change. I'm still her mom and that's how people know me. Maggie was a superstar and I am her mom." 

And today a lady name Marilyn recognized me, and remembered my superstar and said those four little words I love to hear.  Thanks Marilyn, you made my day and my Christmas.

The answer is Yes. I am Maggie's mom. Now and always.

Sunday, December 13, 2015

Light a candle

Today is the second Sunday is December. Those who celebrate are getting ready for Christmas or any number of other Holidays or this year are in the final days of  Hanukkah.  In addition to all of those celebrations, today there is a different celebration sponsored by the Compassionate Friends.

The Compassionate Friends is a worldwide organization that provides support to people who have lost a child or sibling. A friend invited me to a meeting a few months after Maggie passed away and I went somewhat reluctantly. To my surprise, I find it helps.  I found a group of people who really understand what I'm going through because they are going through the same things.  They understand that it doesn't go away in a few months or a few years. In fact, some have been coming for over 20 years.

The "children" or sibling of the attendees were of all ages and the ways their lives ended vary dramatically. Neither of those thing matter, though, because a parent is not supposed to lose a child. It is not supposed to happen, but it did -- to everyone in the room. Whether you understand that or not, there is comfort in the connection. I feel better when I go to the meetings, which only happen once a month.

On the second Sunday in December there is a candlelight ceremony sponsored by Compassionate Friends at 7PM in every time zone around the world. They honor all the children who have preceded their parents or siblings.   Tonight in the Bay Area, there is one in Novato and in South City or San Bruno and probably other places as well.

Though I love the idea of this ceremony,  I am actually not going to attend either one because in all honesty, it will make me too sad. I have learned what works best for me and protect myself by staying within those bounds. The ceremony and ritual are good or me, but doing things publicly is not. I want to honor Maggie and the other children but don't want to be overly sad, so I will do it my own way.

At seven o'clock I am lighting a candle for Maggie and for all the other children of the world who have gone before their parents.  I do this not only to remember the children but also for all the other parents around the world who find themselves in my position. Everyone is welcome to join in.

They are remembered and their light shines on.