Friday, June 10, 2016

Hope goes last

Modo liceat vivere, est spes
While there's life, there's hope
Heauton Timorumenos (The Self-Tormentor) by Publius Terentius Afer


The saying "Where there's life there's hope" dates back over 2000 years. It is found in the above quoted play and that playwright died in 159BC. It survives over the centuries because it is generally accepted as true. My realization that I accept that as true came only recently and qute by accident. As is often the case, these truths come at you from left field.

Last month I was speaking on a panel of parents of patients at UCSF Children's Hospital. The audience was the spiritual care department.  They always want to do a better job serving families and went straight to the source, the parents.  We shared our experiences, what worked and what didn't. Because I interacted with Spiritual Care during Maggie's last hospitalization I told them my experience then. It was a very positive one.

Maggie had her incident on Friday morning and died on Saturday night. We knew what was happening. We knew Friday morning in the Emergency Room. We knew she was not going to survive. Neither Steve nor I said it, but we both knew it.

As we sat there in the ER, I saw Benjamin, one of the Spiritual Care team headed toward us. I worked there, so I knew who he was and he didn't need to introduce himself. Of course I also knew why he was coming and I dreaded it.   I willed him to keep his mouth shut because I was afraid he would say aloud what we both intellectually knew to be true. It was crucial to me that it remain unsaid. He came over and stood with us and said nothing. He was just there for us. It was perfect.

I didn't know why then, but looking back I know now. I was holding on to hope even though I knew she was going. Knowing something in your brain and knowing something in your heart are two different things. If he said it out loud it would be true and everyone would know what I knew. It's not rational, but it doesn't have to be. If we kept it quiet there was hope I was wrong. There was hope she would recover. There was hope.

I explained that during the panel and said simply as the realization hit me:

"Hope goes last."

And it's true. You hold onto to hope when it's all you have. Even as you have to accept the inevitable, you start to hope for different things. One more smile, a peaceful end or whatever. But Hope is the last thing to leave.

At the very moment I was speaking on this panel Steve was in Seattle dealing with the immediate aftermath of the death of our friend Chris, who took his own life.  We didn't know he was in trouble. We didn't know he had been spiraling for months. None of his friends knew because Chris being the generous and gentle soul that he was didn't want to be a burden to anyone.

I do not have depression. I have certainly dealt with periods of prolonged sadness but it has always been based in life situations, not in my brain chemistry. I do not know what that is like and I'm not going to lie, I am glad I don't. But as I sat there armed with my new realization that hope goes last I also realized that for Chris that wasn't true. He lost hope. And we lost him.

I continue to hope. Some of my hopes are realistic, others are probably not. (My presidential bid is looking unlikely). We all have to adjust our hopes many times every day, but the hope is there. Hold on to it and it will hold on to you.

Hope goes last.


Hope is the thing with feathers that perches in the soul - and sings the tunes without the words - and never stops at all. Emily Dickinson

Friday, May 13, 2016

Unlimited beauty!

I think it's past time for an uplifting story.

Last Saturday (May 7) was the third annual Miss Unlimited Pageant. For those of you who don't know about it, the Miss Unlimited Pageant is currently the sole focus of the Miss Unlimited Foundation (www.missunlimited.org). The pageant participants are girls with disabilities which  fulfills Miss Unlimited's goals of celebrating beauty everywhere.

It started in 2014, just a few months after Maggie passed away. I didn't know anything about it at that time. My friend Mary Casey told me about it last year and insisted I needed to contact Michelle Wynn, the founder and executive director. I did so and was tangentially involved last year as a volunteer. It was wonderful, but, to be honest, it was a bit difficult for me emotionally. I was there all day until the pageant started and then left because it was too hard.

I told Steve about it and said, "Maggie would have LOVED this."  When I thought about that, I immediately got more involved. I joined the Board of Directors and have been working closely with Michelle and Scott Hu, the other director since last years pageant.

The 2016 pageant was bigger and better than last year - and last year was pretty damn good. Michelle is a teacher at St Ignatius High School (SI) and many of the SI students work on this all year long. The girls become  buddies to the participants and the boys, dressed in tuxes, are the escorts for the evening. For those of you who are my age, Think "Mystery Date."  Every boy is the dreamboat a girl dreams of.  There is an emcee and  panel of judges made of  of dignitaries from San Francisco and the whole thing is very upbeat.

Because of my friends in the disabled world, I was able to encourage a couple of Maggie's friends to participate as well as other girls I know from being a part of that world. It was fantastic. Every single participant was grinning from ear to ear. Some danced, some sang, some read poetry, some did nothing but appear. My friend Gia wore her inner tube throughout the pageant and stole everyone's heart.


 Every single girl was amazing and beautiful. Everyone had a great time. Everyone won.

The crowd is made up mostly of family members and friends of the participants who get to hoot and holler for their girls in a way that just doesn't happen for this population or for their parents.  Everyone enjoys themselves and you see hundreds of people smiling, proud and happy of these girls that are too often overlooked in our society.

This year was not without emotion for me. I watched these girls light up and I missed Maggie with every fiber of my being. This dance was particularly difficult/wonderful because this is exactly how my sons danced with Maggie and she laughed just as hard as Ashlynn did here. (Her dance partner "Mr. Matt" works in her classroom and paired with two other contestants as well)


 I cried my eyes out in the audience and then applauded as loudly as I could. I missed Maggie and I was so so happy for what I was seeing.

That was fine. Nearly every other person in the room was crying at some point and applauding as loudly as they could too.

I encourage everyone to check out Miss Unlimited and support it if you can. We are looking at ways to expand this and hope to do a pageant in other areas. A couple of things are already in the works. Jump on this bandwagon!!

Friday, April 29, 2016

Out of balance



The world is supposed to balance, right? If something goes wrong, something else will go right. When someone does good they will be rewarded, or should be. If someone is bad they will be punished, whether we know it or not. Mom might catch them, the cops might catch them or karma will get them, but somehow it all balances. Or its supposed to.

Only it doesn't always seem to work out that way.

When Maggie was here and I had to deal with insurance companies, doctors, agencies, medical suppliers, and more, I always felt that hassle of all that should be balanced by sparing me from the day to day annoyances of an average person. But that was not to be. I experienced just as many dead batteries and overflowing toilets as the next person.

Similarly when we lost Maggie, and suffered the worst grief imaginable, I figured we would be spared any more heartache. We had done far more than our share. Let someone else handle things for a while.

But that is not to be either.

Our friend Chris Matthissen died this week. He and Steve had been friends for years and years, dating back to college. He was in our wedding (30 years ago this Tuesday.) Chris was a wonderful guy and a great friend. When Maggie died he was here in a flash. And he helped us grieve, which is the most generous thing a person can do. He didn't tell us what to feel or dole out advice, he just helped us.

I remember the day after her funeral the three of us, Chris, Steve and I, took a walk to Tennessee Valley beach in Marin County. It was a brisk February day, and it was a perfect thing to do. It is about a mile from the parking lot to the beach. Steve and I were in shock, still numb from her sudden death and the ceremony the day before.  Chris respected that and kept quiet or talked at all the right times. When we arrived at the beach, the ocean was churning with energy. We all sat on the beach quietly for a while. I was watching the waves and the water and the energy and feeling a little better.  I didn't say anything, but Chris seemed to understand that. He said, "I love coming to the ocean, it's like it does all the work for you." It summed up my feeling perfectly. I think of that every time I go to the beach. And I always will.

Chris had always come to us because travelling was so difficult for us with Maggie. Finally, last September we went to see him in Seattle and had a great  time. We went to the same house in 1985 after we took the bar exam, but hadn't been back there since. (Chris was gone to South America for 10 years in there too. Another story.) The place was very different. Chris had created an oasis of gardens for himself.  His house stood in the middle of the lot and over the years he surrounded it with 360 degrees of different gardens.




There was an English garden with flowers and lawn and benches, there was a fish pond and roses, and an enormous vegetable garden producing more food than he and his friends could ever possibly eat.

The last piece was a fantastic outdoor kitchen that Chris crafted completely on his own.



I would say that 75% of our time there was spent in that outdoor kitchen. He was a fantastic cook creating things in the kitchen he made from the food he grew. We stayed out there for hours. When it got cold he lit a fire in the outdoor fireplace. It was heavenly.




Chris did not have a wife or kids. He worried about getting old and not having anyone. I told him to come and live with us and we could all take care of each other. I meant it too. Other friends told him the same thing and they meant it too. He was that type of friend. You felt like he was part of your family and it was only right to grow old together.  Losing him feels like I've lost a family member.

I cannot truly grasp that Chris is gone. He was too full of life and love to leave. There is a hole in our world now that will take a long long time to fill.

Maybe the balance is out of whack right now. It's too soon and things are too raw. Maybe in time we will see that having him in our lives balanced out other things. I know in my heart it did, but the seesaw seems hopelessly tilted right now. We are just sitting on the ground with the other end up in the air waiting for something to balance things out. I don't know what it will be, but it will have to be something big.

Steve and I will head to Tennessee Valley Beach tomorrow. That ocean has a lot of work to do.






Friday, April 22, 2016

Navy Blue

When I picked up the mail yesterday there were three letters for Maggie. Anything addressed to her is a bit of a shock to the system. Maggie didn't receive much mail when she was alive and well, so receiving something now, two years after her death is jarring.

I just brought them upstairs with the bills, solicitations etc, left all the mail on the cutting board and walked away. It really takes a minute to gather oneself in these weird situations.

After a bit I came back to go through it.



Maggie received not one, not two, but THREE letters from the United States Navy encouraging her to consider a career in the Navy upon graduation from college.  One very specifically suggested she become a Navy Dentist! She could fight decay on behalf of her country!

I'm certain the Navy needs college graduates and dentists and ever other type of accomplished young person. They also need to do just a tiny little bit of work on their mailing list. Sending three letters to anyone is a waste. Sending even one to a person who was never able to join the Navy and, more importantly, to one who died two years ago is stupid.

I'm not feeling terribly confident in our Navy right now.

I'm as blue as I can be.


DIANE RENAY
"Navy Blue"
(Bob Crewe, Eddie Rambeau, and Bud Rehak)
Blue, navy blue, I'm as blue as I can be
'cause my steady boy said "Ship ahoy"
And joined the Nay-ee-ay-vee



Monday, March 21, 2016

Goodbye to Mickey

We went to lunch a couple of Saturdays ago with Steve’s dad, brother and sister in law. We went to an old time haunt that was packed with people.  We maneuvered our way back through the narrow restaurant with my father in law in his wheelchair. As we passed one table I spied my cousin Mike and greeted him. We had to keep moving because we were blocking traffic, but once we were settled I went back to say a proper hello and visit with Mike and his wife. We were laughing in no time.

Running into cousins is not something that happens every day, but it’s not that unusual for me either. I am one of 31 cousins on my mother’s side (none on my dad’s side) and many of my generation are still in the Bay Area.   We all tend to frequent similar restaurants or events and happen upon each other occasionally. It’s always a pleasure.  One family of cousins are based out of Seattle. When Steve and I were there last year, I made a point to connect with a couple of them. We have shared family and different takes on family stories which are very entertaining.

My generation of cousins is spread out over about 20 years, and the spread in each family isn’t much less. Each of my mom’s siblings had 5, 6 or 7 kids so, except for the very oldest and very youngest cousins, we always had someone around our age in every house.  It was always a blast when we went to a cousin’s house or they came to ours. Christmas at Grandpa Casey's house was epic.

When you’re a kid your cousins are your first friends aside from siblings. The parents hang out together and the kids naturally did too. That close connection changes over the years as you enter high school and have your own “crowd.” Then older siblings start to marry and getting together with your immediate family become harder so cousins take a back seat. Once the next generation comes along the definition of “immediate family” shifts to include your spouse and kids, so your siblings take a step back, relegating cousins back yet another tier. It’s really an ever widening circle.

Other than the chance encounter described above, as we got older and started marrying off, the cousins generally saw each other only at weddings and funerals. As the family expanded into the next generation, even the weddings went by the wayside. (If we were all included in every wedding, there would be nothing but family at weddings. Potential in laws would run away.) That leaves us with funerals. And we always show up for those.  Sadly, they happen fairly regularly.  In the last two years we have lost one in each generation, my Aunt Rita, my cousin John and my daughter Maggie.

And now there’s another.

My cousin Mickey died last night. She was only a few years older than I and far too young to die. She had ALS and had been declining over the past several months. I suppose that means this wasn’t a surprise, but I still feel shocked that she’s gone. And so very very sad. 

Mickey was just about the nicest person you’ve ever met. Whatever challenges life threw at her – and it did not hold back – she met with grace and kindness. Her son Bobby had special needs and Mickey was a voice of reason and reassurance when Maggie was little. Bobby died suddenly a few years ago and of course Mickey had the most poignant and understanding things to say when I lost Maggie.   
When she was diagnosed with ALS she said she finally understood why Bobby had to die first because he could not have handled seeing her so ill.  Not “why me” or “this sucks” which would have been understandable; instead it was the same grace she always showed.

I went to visit her a few months ago along with my friend Nonie who has known her for years. We had a great visit. Her sister Geri was there as was her daughter Marie, baby granddaughter Clare and boyfriend Joe. Mickey was difficult to understand because her speech was effected by the ALS, but her spirit was strong. We laughed and laughed through the lunch. Her motto was "have fun every day" and we did so that day. As we were getting ready to leave, Mickey had us all sing along to the song “I Hope You Dance” which had become something of an anthem to her. (see words below). Geri and Marie were used to it and handled it beautifully. Nonie and I were more emotional.

I felt like I was betraying Mick by being sad. She wasn’t sad, she was living every minute of her life and encouraging others to do the same.  I wanted to be like her because she was so amazing, but the reality of the situation was difficult to bear. 

Instead of admitting to that, I lied. I told them that the song made me think of Maggie. It didn’t really, but that made my tearing up more acceptable. I felt terrible as Marie reached out to comfort me. Right then, though it was more important to me to try to adopt Mickey’s outlook than admit to my own sadness.  I’m not sure I fooled anyone, but that lie got me through those tough minutes.  (By the way, I’m sure Maggie was ok with that and I know Mickey would be. I would likely do it all over again if I had to – but I hope I don’t have to.)

I am blessed to be a part of such an enormous family and as sad as the occasion is, I will be happy to see many of them at the funeral. But I will miss Mickey and her quiet grace. I will miss her encouragement and the way we understood each other as only parents in our situation can.   

Rest well, Mickey. And thank you. 

I hope you are dancing again.


"I Hope You Dance"   by Lee Ann Womack


I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you'll give faith a fighting chance,
And when you get the choice to sit it out or dance.

I hope you dance....I hope you dance.

I hope you never fear those mountains in the distance,
Never settle for the path of least resistance
Livin' might mean takin' chances but they're worth takin',
Lovin' might be a mistake but it's worth makin',
Don't let some hell bent heart leave you bitter,
When you come close to sellin' out reconsider,
Give the heavens above more than just a passing glance,
And when you get the choice to sit it out or dance.

I hope you dance....I hope you dance.
I hope you dance....I hope you dance.





Sunday, March 6, 2016

Dedicated dedicators.



After a month of dry and really beautiful weather, there was a light rain falling yesterday morning. That is something we desperately need in California and it is generally welcomed. But why yesterday of all days? We chose that day for the dedication of Maggie World at the Playground at San Francisco Zoo.

The elegant plaque.  

I wondered if the rain would keep some people away and would have understood completely if it had. But they all showed up in their raincoats and hats and carrying umbrellas. I called them my tribe. They are the people we could count on through Maggie's life and still, two years after she passed away. Some members of the tribe were missing, because we are fortunate to have a lot of support and couldn't include everyone, but there was a good turnout nonetheless.  We met in the Great Hall, a beautiful room and wandered over to the playground for the dedication.

Our friends Ed and Lynn Poole made all this possible with a donation to the zoo in Maggie's name. Ed arranged for the dedication just after Maggie's birthday, which made an emotional week even more so. It was all good emotion, though: happiness, pride, and tremendous gratitude.   I'm grateful to Ed and Lynn, grateful to the zoo, grateful for the great support we receive from so many, and grateful that I got to be Maggie's mother.

The zoo is a place people go to have a nice day out. There are families with little kids and visitors from all over. If you haven't been there in a while, you have to see the changes. It is transformed from the zoo of my youth - the days of Monkey Island are long gone. The exhibits are lovely, thoughtful and appropriate and the grounds are very lush and welcoming.

The playground itself is enormous and accessible for all children. It was quiet in yesterday's rain -- and we were there before the zoo opened -- but the squeals of delighted children will surround Maggie's World, and that makes me happy.

My friend Nonie, a tribal leader, was out of town and could not be there, but she gave me a membership to the zoo along with a zoo key so I can head out there anytime I want to visit and see how much fun the children are having in Maggie's World.

I'll be the weird smiling lady on the bench.

If you join me I won't look so weird.

________________________________________
check out all the cool stuff at the zoo  http://www.sfzoo.org/


I put all the pictures from the dedication on a share site, which you are welcome to check out. I will work on adding captions so you can tell who's who.  Here's the site:   https://maggieszoodedication.shutterfly.com/




Thursday, March 3, 2016

Happy Birthday

It's Maggie's birthday. She would be 22 today.

I woke up very early - like 4am - and everything just felt heavy. My limbs were like weights, the blankets were like iron and even the air was like lead. It's less of a sadness in the tears and weeping kind of way and more of a heaviness of the reality of her being gone.

Maggie's birthday was always a big celebration around here. We had many parties at school over the years through elementary, middle and high school. There were Pinapple parties, because that was her favorite word then, dance parties, Mardi gras parties and more. Then we had a giant 18th birthday party in a rented hall with 100 people. That was wild fun.

 Maggie knew this was her day (and really what day wasn't?) and she relished the attention.

Despite the revelry, Maggie's birthday always had a touch of sadness too. Like many parents of kids with disabilities, birthdays are a reminder of what other kids her age are like and what she would be doing if life were different. Especially in the early years when every year in a typical kids life is so different from the last. You also can't help but remember the day she was born. That day was the second worst day of my life. The child you expect is gone and you have a different child. In time you learn what to do and how to do it and you accept and relish the differences, but at first you are just terrified and sad. The day your child is born is supposed to be happy, but that day was not. It's a bit of a harbinger to let you know that everything will be measured differently.

If Maggie were still here I would be angsting over 22 because that would mean it was time to transition to the adult world. We would have to leave the school district and find a program that would work for Maggie going forward. I would have worried about nursing and all of those things and they would have been very real concerns.

How I wish I had to do that today.

But Birthdays are happy! And Maggie was happy! And remembering that makes me Happy. Well, happiER anyway.

Happy Birthday Maggie May. I hope there are dances and pinapple and Mardi Gras celebrations for you.

I miss you every minute of every day.