Wednesday, September 14, 2016

Italy





When you wake up Friday morning I will be landing in Florence, Italy.

This is a trip we have planned for a long time.  The airline and hotel reservations have been in place for months.  Because our life is more predictable than it used to be, we didn't bother with trip insurance. Of course we were going to go.

Then, early in the summer, Steve's dad got sick and we weren't sure if the trip was going to happen so all plans were put on hold.

We brought my father in law here to our house and have round the clock caregivers. When he moved in here at the end of July we weren't sure what was going to happen. With the right kind of care, however, he has stabilized and is comfortable.  He lives in Maggie's room so our life has come full circle.

Steve's siblings encouraged us to go on our trip and they are both coming here to manage their dad's care while we are gone.  We couldn't do it without that help and I am very grateful.  I confirmed the reservations and made a few more plans. Somehow, though neither of us really got excited about this because of the situation.  I think neither of us believed we were really going to be able to go. Now were are just 36 hours away from departure and excitement is building.

As we make the final preparations for our trip, I find myself in the familiar position of orchestrating the needs of a medically fragile individual.  Though we never attempted a trip this long when Maggie was with us, the similarities are uncanny. Instead of shift nurses and therapists and bus schedules, it's visiting nurses, caregivers, and social workers.  Supplies are laid in and I will stock the groceries for the first part of the trip. There is also the matter of making sure Steve's siblings know how to use the remote and other household things, and know when to put the garbage out. And, because this is San Francisco, we have to warn them of the car break in problem and plethora of parking tickets.

I think it's all done. I think everything is packed. Passports are ready, boarding passes will be printed. Things will be forgotten and we will manage without them.

Ciao.


Friday, September 9, 2016

Just Thursday

Many years ago I went out to dinner with Steve after we completed the last day of the three day bar exam. We had been in a cocoon of studying for two months and the test was finally over. The dinner was supposed to be celebratory, but it was very low key. We were both so exhausted and stressed and relieved we barely spoke during dinner.  As I looked around at other people in the restaurant chatting among themselves I was dumbfounded that they weren't feeling what I was feeling. I said to Steve, "Look at all these people. To them it's just THURSDAY."

Anyone facing a major upheaval in their life eventually comes to the realization that it is not effecting everyone else. It's a necessary first step toward normalization. At first you don't even think about it because you are in the middle of the explosion. Soon after, however, you look around and understand others cannot relate. It's not because they don't care, it's because they don't know. It didn't happen to them. Everything in your life is rocked to its core and people are still waiting for the bus, doing their grocery shopping and heading to work

It's hard to fathom when you life has hit some turbulence, be it good or bad,  that you may be the only one who feels it.  But that's the way it is supposed to work. We need the world to continue, we need people to hit turbulence at different times so that things can go forward. We each move from the center of the explosion to the edges while others are experiencing their own explosions. We become the worker bees while others celebrate or recover depending on the nature of their particular explosion.  That's how life works. 

Though the sadder things in life tend to be more dramatic, life altering turbulence isn't necessarily negative.  Falling in love can upend your life without anyone but the two of you feeling a thing. It's your job to absorb that into your life and move forward to give others room.  It is easier to move forward when the upheaval is positive rather than negative. Some things change your life forever - having children certainly does, losing a child does even more. The positive things become part of the fabric of our lives. The negative ones blow a hole in that fabric.

It was 31 years ago that I had that dinner with Steve. Since then I passed that bar exam, married Steve, started a career, bought a house, had and raised three children, dealt with years of medical crises, lost a parent, lost one child, restarted a career, and so much more.  Each of those has been an upheaval of one type or another.  As Jimmy Buffet said, "some of it's magic and some of it's tragic." . 

Everyone has to find their own way to continue forward with all that life has dealt them, good or bad, magic or tragic. We don't have to forget. We don't have to pretend we aren't forever changed. We just have to go on however we can. We have to make our way out of the epicenter and toward the edges and become part of life. 

I wish I had some sage advice to offer on this subject, but 2.5 years after losing Maggie I am still bumbling along -- faking it til I make it. Admittedly, I haven't moved too far from the explosion, but I am beginning to get some perspective.  

Right now I am back at that restaurant finally lifting my head realizing for everyone else it's just been Thursday all along. 

It's a start.    





Friday, July 22, 2016

Riding off into the sunset.

Today was a hard day. After 2.5 years I finally donated Maggie's wheelchair today. 

It was time. But it is hard.

When Maggie was here, I would have gone to the mat with anyone who said Maggie's chair defined her. She was so much more than that stupid hunk of metal.  But after she died I could not part with it because it was part of her. It was her transportation. It went wherever she went and actually allowed her to get there, so it was also her freedom.  It was the only way she could really access her talker, so it was central to her communication. It was like a weird member of the family always in a prominent place in the house. (Had to be prominent, the thing was so big.)  When Maggie passed away the empty wheelchair was on the altar at her funeral. That was all we needed for people to feel her presence. 


So I guess if I'm being honest the wheelchair did kind of define her.

It's been sitting in our garage since February 2014 just off in a corner. Though I wasn't ready to part with it, I hated seeing it there. It made me feel guilty because that chair is full of bits and pieces that so many other kids can use. 

Now my father in law is moving in and has many special needs of his own. We need all the space we can get, so coupling that with my guilt over hoarding coveted parts of chairs, I decided to pull the trigger and called CCS (California Children's Services) and they were happy to take it.  I did ask that someone remove the cover with her name on it and give it to us and I'm sure they will. 

Since I sold the van I didn't have anyway to transport the chair, so they made arrangements to pick it up. As I wheeled it into their van I could feel the emotion welling up. I asked him to wait while I took a picture and held it together until he drove away. 



Just as the guy pulled away, my kind neighbor was coming down his stairs and greeted me warmly and was very surprised to see me in tears. The poor guy moved here after Maggie passed away and never knew her;  he had no way of knowing how significant that was, if he even saw any of it.  He just gave me a big hug and offered whatever help he could. But there's nothing he can do. It just is what it is. 

I know someone or several someones will get a lot of use out of all parts of that chair and that is how it should be.  It is sitting over at the CCS Medical Therapy Unit where Maggie spent so much time going to therapy and Girls ROck camp and Art Tech Camp. That unit is at 25th and Quintara Streets in the heart of the Sunset District of San Francisco. So the drama was complete.  It actually did ride off into the sunset.

And that made me smile. 






Wednesday, July 13, 2016

Maggie's Peak

Maggie's Peak (I did not take this photo) 

Let me start this by admitting a few things. I am not a hiker. I am overweight and out of shape and generally choose to sit out activities that take place in the great outdoors. I’m not proud of any of that, but it is all true and important background information for the following.

About a month ago my brother Pat, an avid hiker, sent me this picture.



He took it from the top of Maggie’s Peak in Desolation Wilderness, just west of Emerald Bay at Lake Tahoe.  The picture is so beautiful it took my breath away.    

I looked it up and the description of the hike wasn’t too scary. Pat told me there was a lot of “up” and just when you thought you were at the top there was more “up.” 

I talked about wanting to do it from the safety of my living room, 200 miles way, but it was just that – talk. Then I was invited to spend a few days at Tahoe with my friend Eileen, who was also Maggie’s pediatrician. She too hikes quite a bit and was very interested in trying this. She talked to rangers about the best times to go etc. I began to worry about it because I might actually have to put my feet where my mouth was.  Oh well. 

I arrived at Tahoe on Tuesday and Eileen and I decided to try the hike on Wednesday. I warned her that I was not in hiking (or any other kind of) shape. Eileen said simply, “we will just give it a try. If we can’t make it no problem.”  I felt better. But then she added, “We will do it for Maggie. Maggie never gave up.” 

That’s when I knew I had to do it.

We arrived at the trail head about 715 AM. Pat said it took him an hour plus to make the climb, so I figured it would take me two. It was more like three to get to the top. It’s a lot of elevation change and I took multiple rests.  But we were rewarded with views like these on the way up.

 Also we made a slight detour at Granite Lake, which is pictured in the foreground of the photos from Maggie's Peak. We scurried off the trail to talk to a guy with a map because we were unsure if we were going the right way. We were -- just as Pat had predicted, there was just more UP before we got there. 

The altitude was kind of getting to me. I had arrived in Tahoe (elevation 6200 ft) only the evening before and wasn't quite acclimated and then we climbed to over 8400 feet in just over three miles. I was quite nauseous and light headed at the top and had to sit down for awhile. Of course I had my very own doctor with me so I wasn’t too worried, even if I am decades older than most of her patients.

Actually the altitude illness was rather fitting in its own way too. We stopped taking Maggie to Tahoe when she was very little when it finally dawned on me that she was getting altitude sickness whenever we went up there. The sickness is kind of subtle (until it’s not) and it took me a while to realize that is what was happening to Maggie even at Lake level. I thought about that as I climbed and thought of so many times with her.   

The hike was absolutely worth every step and every moment of queasiness. The views going up were spectacular and the view from the top absolutely extraordinary.






But the emotional reward was the best of all. I was sitting atop Maggie's Peak. I actually climbed a mountain for her.  

Eileen and I both placed a rock for Maggie at the top of Maggie’s Peak.




I sat there drinking in the unimaginable beauty thinking about and missing Maggie. I could feel her laughter in the wind and see her smile everywhere I looked. It was wonderful  I thank my brother Pat for inspiring me and my friend Eileen for helping me follow through.

I'm very glad I did it and recommend it to you. If I can do it anyone can. Leave a rock up there for my Maggie and send me a picture.   

________________

This one is from the backside of Maggie's Peak looking Northwest into Desolation Wilderness. that's Eagle Lake far below. It's supposed to be a nice loop, but we went back down the way we came up.

Tuesday, June 28, 2016

For all the children

The other day I had the opportunity to attend a Ceremony of Remembrance at UCSF Benioff Children's Hospital. It's an annual event but it was my first time attending. The event is a memorial service to honor the patients of the children's hospital who passed away.

I was invited in 2014, right after Maggie passed away but there was no way I could handle it then. I was invited last year and never really considered attending. This may sound strange coming from me, who writes a blog and puts parts of my life online for anyone to read, but I do not like public or group sharing of grief. It's too personal. It's too much.

This year the invite came and the service was scheduled for 5:30 on Thursday afternoon.  I facilitate a group for parents whose kids are in the hospital on Thursday afternoons from 4-5. It was extremely convenient. I was already going to be there anyway and I greatly admire many of the people involved in the planning of the service, so I RSVP'd that I would attend. When the reminder about the service arrived I felt like bolting; but I went anyway, and I'm glad I did.

We were encouraged to bring a picture to display on the table outside the event along with photos of many of the other children. I specifically chose the one with Tyre at their pre-prom party. Tyre passed away about a year after Maggie did and then his mom passed away too. I figured there was no one there to remember him, so I did.




I knew too many parents in there because of the various hats I wear at UCSF. There was Kristi from the Family Advisory council with her family to honor her son Adam who passed away just a year ago. There were two families I came to know in the parent group and Michele, another Family Advisory Counsel member, who spoke at the event about the amazing effect her daughter Cora had in her 8 short months on the planet.

There were readings and stories and songs and it was lovely. There was a slide show of the children being honored. Probably 75% of the children were babies who didn't make it either at birth or shortly after. This ceremony was particularly important for those families. I had so much support when Maggie died at age 19, but society really does not give enough recognition to the amount of grief a family feels for the loss of a newborn or young baby.  I am glad they have this ceremony.

I hugged Kristi as Adam's picture appeared. The man to the left of me started to sob when his son's face appeared. It was gut wrenching. More and more children's faces appeared, many of them so very small. I honestly couldn't remember if I ever actually emailed Maggie's picture for the slide show and worried she would be left out. But that resolved itself when this appeared on the screen.  I'm glad she looked so vibrant and happy.



The final part of the ceremony allowed parents to pick a river stone from a basket and place it in a vase filled with water. I did that and loved seeing all the stones together. The parents were invited to say the name of the child they were honoring. I placed my stone in the vase and moved to the microphone. I saw all the people in the room and felt all of the pain and honor and pride and grief at the moment. I choked up and could barely get her name out. I simply said  "Maggie McDonald" and then walked off the stage to receive the rose they were giving out.  My friend and co-worker Lisa, who is also a bereaved mother, gave me a big hug.

The depth of feeling I experienced was exhausting.  Generally this is a rather lonely path. No one really knows what this feels like. Not that day. All those families in that room know exactly what it feels like. And we were all there for each other. I supported them and felt their support of me and realized how much I needed it.

Of course I don't need a service like that to know Maggie is remembered. She is such a part of me that she is always on my mind. Every minute of every day. I miss her and I am proud to honor her. Still, it felt good and powerful to take part in the ceremony.

And, though I wish it weren't so,  I am likewise proud of be among the families walking this path and honor every one of those children from babies to young adults.  We were lucky to have them all no matter how short their lives were.  They left indelible marks on all of us.

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!!