Tuesday, March 24, 2015

Coming out of my shell

Thanks for all the encouragement following my last post about finding a new job.  The encouragement has come in the form of solid leads in some cases and that is especially fantastic. We shall see where all of this takes me.

Yesterday I ran into someone at the hospital and told her I was planning to leave. She asked kindly, "Is this too much?"  I smiled and realized for the first time that wasn't the case at all. I told her, "No, actually, it's not enough. I'm just ready for more."

The best comparison I have for all of this is a turtle. I have been staying in my protective shell -- safe from the outside world for the most part. Because of the people I work with at the hospital, I feel very protected and safe. I haven't had to take any risks at all. They have taken care of me since Maggie died and allowed me to be part of the world while still protected.


Right now I guess I'm ready to come out of my shell. I'm sticking my head out and looking around, but know I can retreat right back into the shell if need be. With the encouragement and ideas coming from all of you I don't feel that's necessary.


Note the rather shocked look on the face here. That's exactly how I feel. Please do feel free to keep those ideas coming. It's energizing, even at a turtle's pace.

I do like the turtle metaphor. It also allows me to take this slow. And you know what they say about slow and steady....





Wednesday, March 18, 2015

Wanted: Choice position

This is a strange time in my life.  .

I have friends and relatives retiring. They have put in their long hard years of work and now get to take it easy to enjoy grandchildren or to enjoy the non professional sides of their respective lives. They've earned the retirement, financially and every other way.  I wish them well.

But, once again, I find myself out of sync with my peers.  As they decide how to spend their hard earned leisure time, I have decided it's time to get back to work. So with all my experience and the gray hair to show for it, I am looking for a job.

I have been working at UCSF Benioff Children's Hospital for the past couple of years. I work as a parent liaison, helping families navigate the hospital setting and get what they need for their kids. I like it and I'm good at it, but it's just a couple of days a week and I need to do more. It was perfect when I had Maggie here and it was perfect to come back to after I lost her. It is a safe place for me. But I can't stay in this cocoon forever. I want to work more than that and I need to feel like I'm making a difference. I haven't ruled out staying there if the job is right, but have given my notice so I am not lulled into complacency. It would be easy to keep doing what I'm doing, but I know it's not enough for me.

What type of job, you may ask? And that would certainly be a reasonable question. The answer is not as clear. My husband suggested I go back to a law firm, but I'm not sure that's right for me. I am not the same person I was when I was forced to leave that world when Maggie arrived in our lives. Twenty years of advocating for just one client sharpened some skills and focused my interest.

 I know that I want to stay in "Maggie's World" as I've come to call it.  That likely means the non profit world, or one of the agencies that serves the disabled or medically involved people of the world. I have developed a certain expertise in this area that I want to put to work; that it allows me to continue to honor Maggie is just gravy.

So I'm laying the groundwork and networking and doing all the things one does when they are in re-entry mode. Now I'm telling all of you and I welcome your thoughts, leads, ideas or anything else.

In a perfect world I could just toss out something like Jane and Michael Banks did in "Mary Poppins" and the perfect job will blow in with the wind.

I never smell of Barley water. So I've got that going for me.

Sunday, March 15, 2015

The never ending road.

I've been trying to get my head around this whole grief thing for over a year now. I've heard it compared to a long dark tunnel, or a dark abyss.  I've compared it to being at the mercy of the river's current, All of those suggest a journey, and I guess that's what it is. The questions is where does this journey go and how long does it last?

Grief is often called a process, but that, like the journey, suggests an end, and I doubt I can ever expect this to end. To be honest, I'm not sure I want it to. In the beginning when everything was so so raw I could never have said that, but after a year I'm more comfortable with it.

"She was no longer wrestling with the grief,
 but could sit down with it as a lasting companion
 and make it a sharer in her thoughts." ~George Eliot

I do think of grief as a lasting companion. I have to learn how to live with that companion, because I believe it's here to stay. And I guess that's OK. I don't have a choice, so it has to be OK. 

Sometimes I wonder if I'm grieving the way everyone else does. Intellectually I know that he answer is "no", because grief is such an individual thing.* Still, I wonder.

I talk to other parents who have lost children and they can't change anything. Their child's room and belongings are left exactly as they were.  I feel the opposite. If I don't change things I am stuck in the worst day of my life like Bill Murray in the movie Ground Hog Day. We have removed most of Maggie's things from her room, painted it, redone the floors and are ready to put it to a new use. We sold the van and bought a little car that would have never worked for Maggie.  After a year of looking at it longingly and waiting to hear Maggie's "voice" again,  I donated her dynavox to someone who could make use of it. Keeping it and keeping everything the same doesn't bring her back.

Some parents can't bear to look at pictures of their child because it makes them too sad.  I can't look away. I draw comfort from the incredible happiness that radiated from Maggie in every photo. I see those photos and watch the videos and laugh instead of cry. If people don't want to see pictures, they better not come over here (or read my blog or look at my facebook page) because Maggie's pictures are everywhere, just as they were before she died.

Then I type the words "before she died" and I stop and look at them and shake my head in disbelief. How can that be? She's here, She's part of me, She can't really be gone, can she?  It's been 395 days and I'm not sure I believe it yet.

Maggie not only lived her magical life, she defined mine for the last 20 years. I am very much at sea without her to anchor me. It's not just sadness, though that is a huge part of it. It's everything. It's what I did and who I was and I've lost that as well as my amazing daughter. Part of this Journey, or process,  is to figure out who I am without her. Instead of Maggie as my lasting companion, I now have grief. It's exhausting, but it's helping to redefine me - again.

I know who I was before Maggie was part of my life but I'm not that person anymore. With or without Maggie's life or death I would be a different person now than I was 21 years ago. Time and experience change all of us. Now that she's gone I have to figure out who and what I am in a whole new world. Maggie shaped and molded me into something new and I have to figure out how and where I fit in.

So the journey continues. The process goes on and on. My companion stays with me. All I can do is keep going. As Winston Churchill said, "If you're gong through hell, keep going."  The secret, though. It's not hell. Hell was losing her. Even though I don't want to believe it, that already happened.  The worst thing has already happened.

It can only get better from there.




*For more insight into the individual nature of grief,  check out this opinion piece from the New York times called Getting Grief Right

Wednesday, March 4, 2015

The Room.

Three or fours years ago we had the floors in the house refinished. We had to move everything out of the living room, dining room and the hallways and steps. We also had to vacate the house for several days when the work was done. The dust and the fumes made vacating the smart thing to do and our inability to walk on them made vacating the only thing to do. We stayed at a friends house across the bay and thoroughly enjoyed their swimming pool during our exile. When we returned, the place was gleaming.

At that time there was wall to wall carpeting in Maggie's room, so that was left undone. If I recall correctly, we took out all the equipment, covered the bed and dresser in plastic and sealed off the doors to the room to prevent that fine dust from getting everywhere. That was successful, though we gave it a thorough cleaning before putting Maggie back in there. (Fine dust and tracehstomies are a bad combo.) A year or so later it was clear that carpet had lived its useful life and we pulled it up. The wood floors in Maggie's room, which adjoins the dining room were in sorry need of refinishing.  The plan was to do it all again this time focusing on the bedrooms. But we never got around to it. The upstairs bedrooms aren't too bad, but Maggie's room with its constant use and punishment was kind of sad. Still with all that equipment and her giant bed and the area rug, the need to refinish the floors was mostly hidden from view.

After Maggie passed away we returned or donated the equipment and gave the bed to a friend who also has a disabled child. Suddenly there was a room available, but we didn't have the heart to do anything about it. The giant storage shelf stayed put as did Maggie's dresser. The chair the nurses used sat empty in this half empty room. The condition of the floors became obvious as did the need for a paint job. Each of the levelor blinds had at least one broken slat because Maggie thought it was hilarious to yank on those things as hard as she could. (That still makes me laugh.) Since there is no longer a need for privacy in that room, I just left them fully opened, that way the damage was not as visible and the room was filled with light.

 In the last few weeks, Steve has attacked that room head on. He took down the storage shelf and the broken blinds,  he moved the remaining furniture into the dining room and refinished the floors using his belt sander. We closed it off and he put on the several coats needed to make it gleam. Once that was done, he painted the room, removing the marks where the lift once hung from the ceiling. He put the area rug back in along with the chair the nurses used. The intention was to get the rest of the stuff out of the dresser and put that somewhere else, but I just put it back in the room for now. One can only handle so much change at once.

The plan is to put my desk back there and stop working at the dining room table. The problem is the desk is completely covered with papers and crap upstairs and I refuse to move it until that's cleaned off. I may accomplish that with a sweeping arm motion and deal with the ramifications later, but I haven't done anything yet. Part of me hates changing the room and part of me can't wait to sit right where Maggie's bed was and continue to draw inspiration from her.

We were afraid to make the changes to her room. We had enough change. But now that the work is done, it feels great. It doesn't feel like we violated a sacred space, in fact just the opposite. It is still "Maggie's room."  It is sunny and bright just like she was.

Here is the space with Maggie trying to escape from her giant bed.



And here it is now, freshly redone with Georgie curled up on the rug. Maggie is there, believe me. 


I will sit just about where her feet are sticking out of the bed in the second picture. She will keep kicking me forward. 

And that is ok with me.

Monday, March 2, 2015

21st Birthday

Today March 3, is Maggie's birthday. She would be 21 today.  I am certain she would have thoroughly enjoyed getting carded.

I can just hear her talker. Instead of the constant "Mom I want to go to the mall" I'm sure it would change to "Mom I'm going to the bar. Don't wait up."

Maggie did go to a bar once and she loved it. It was a going away party for her teacher Tanya Derkash who was leaving San Francisco to move to China (and is now in South America). Maggie thought that was a great experience. The noise and the happy energy just made her so very happy.  I had to step outside and snap a photo of her holding court in the bar


I wrote about that day in an earlier post Maggie World: Pub Crawl

Happy Birthday Maggie, wherever you are. We miss you and love you and thank you for all the laughs and love.

Hoist a glass for Maggie today.

Wednesday, February 25, 2015

There was a Boy

Somehow another week slipped by. I have so many posts in my head, but for whatever reason, I am having a hard time getting them written and posted. It's not writer's block so much as it is writer's fatigue, or perhaps just laziness.

Fortunately, other writers are not suffering from the same malaise. Chris Gabbard has written a memoir about his son August who lived a life similar to Maggie's. August passed away at age 14 just a few months before Maggie. Chris, a college professor, wrote the book in a series of letter to his daughter, August's younger sister Clio, explaining all aspects of August's life.  It is basically a series of love letters to and about his children written by a college professor. Hence, it is both wonderfully personal and scholarly at the same time. The first chapter/letter is available on line. It gives an overview of the entire book and leaves us wanting to turn the page and read more. You can read the first chapter here:


.
Chris sent it to me the other day asking if I minded that Maggie was mentioned in the dedication.

Mind?
Uhhhh,,,,no.
Honored is more like it.

Chris never met Maggie; in fact Chris and I never met until recently. I knew Chris' wife Ilene when August was little and they lived in San Francisco, but I never met Chris until last summer. I have corresponded with him for a few years now because of our similar circumstances. (You may remember posts about his earlier article A Life Beyond Reason, Maggie World: A life Beyond Reason)

Though no two experiences are the same, I know from my own life how very honest and true this memoir is.  There were parts that made me teary and parts where I was vigorously nodding my head as I read.  The part about weary parents being pulled into the disability rights movement was especially powerful to me:

The point is not that medicine should stop trying to save people. Rather, the point is that society has to rethink what it means to be dependent. Because your brother’s situation made this relatively new, society-wide development apparent to us, your mother and I embraced a political struggle we had never thought much about or wanted to join, namely, the disability rights movement. We had no choice. When we went home from Loma Prieta with a significantly impaired baby, we had little idea what lay before us. We wondered if our son would live, and, if he did, how he would get by, and we of course wondered as well how our family would cope. Looking for assurance and a place of comfort, we found that the campaigners for disability rights never questioned whether your brother’s life was worth living. For them, it simply was. Because of this, we felt most at home among them. As a matter of necessity, their struggle became ours.

Chris Gabbard writes so very eloquently about all of the aspects of raising a child with disabilities. He takes the whole subject to a lofty new level.  And it inspires me to get back to writing.

Read the letter. It is long and delicious.

Here's the link again Twelve Things, Letter One.







Wednesday, February 18, 2015

Thank you all


I really don't know why the first anniversary of Maggie's passing was such a big thing, but it was. As the day approached, the world seemed to get heavier and heavier. But it was made lighter by so many of you. 

People are incredibly kind. We are very fortunate to have so much love and support in our lives. We've felt it not only this past year but always and again this week. We received so many cards and notes and texts and emails and calls and hugs this week. There were flowers delivered by a stranger, flowers left on my doorstep and flowers that arrived with visitors. Each gesture was a message telling us that Maggie is remembered and that people feel our loss. It really helps and I thank you all.

One friend happened over not knowing what day it was. He saw the flowers in my hand and asked the occasion. I told him and his eyes filled with tears. He said, "We all have our things. Everybody has something. But yours is a big one." And he gave me a tight hug. It was lovely. 

We do all have our things. 

And I thank you all for helping us with ours.