Monday, April 20, 2015

Miss Unlimited

Here is something I never thought I would say: I will be attending my first ever beauty pageant on May 9. It is the Second Annual Miss Unlimited Pageant. No, I am not a contestant; it's not quite THAT unlimited. This pageant is for young women with a disability.

I heard about this after it happened last year, but it was right after we lost Maggie and I was in too much of a fog to look into it. This year the organizer Michelle Wynn, reached out to me, and I'm so glad she did. Because I know how these things can go, I warned here that some in the disabled community might not like this because it is a segregated event and there are many who simply want disability to be part of the overall tapestry of the world, and not its own category. Her response cemented this for me, She basically said, I know there are people who won't like it, but the girls love it and that's enough for me.

Amen, sister.

Let's face it, inclusion will take a generation or more to happen. If we wait for that, we lose an entire generation of opportunities to make people happy. There are things we can do now, so let's do them. We can celebrate real beauty and stop ignoring a whole subset of the population, so let's just do it.

The Miss Unlimited organization describe it best on their website which you should check out in full,

             All too often we are taught to believe in a false definition of what it means 
             to be beautiful, casting aside the essential values of real beauty; strength,
             kindness, confidence, the qualities that make us all radiant.
             The Miss Unlimited Pageant was founded on the principles of empowering the true beauty                  and unlimited potential of girls with special needs. The pageant provides the opportunity for              these young girls to be celebrated for all they are inside, and not just defined by what the                  world sees on the outside.

I love this idea for many reasons. It is a chance for these young women to be pampered and celebrated, something that just doesn't happen often enough to girls with special needs - or to any of us. On a separate point Michelle Wynn is a teacher at St. Ignatius High School and the event will take place at Sacred Heart High School thus giving the Catholic school community a much needed entry into the world of special needs. Catholic schools and private schools in general have very limited ability (or interest) in providing special education, therefore depriving themselves and their students of a complete understanding of the world of special needs individuals.

 I could list many other reasons, but let's just cut to number 1 - Maggie would have LOVED it. Man oh man, she would have been there front and center having the time of her life. There was nothing better than prom day for her. She loved getting dressed up and heading out for the night. This would have left that in the dust.

Check out the website and think out getting involved. If you know young women who might be interested, help them fill out an application. If you can donate or volunteer, please do so. It will be a fun day and a chance to make a big difference in the lives of some truly beautiful young women.

Thursday, April 9, 2015

A friend indeed

In Maggie's last years she became friends with a new and older group of kids, including Thanh, Ben and Clay. Thanh was a mentor to Maggie and other kids, especially those who used talkers. Thanh herself used one and was quite good at it. She invited Maggie to an art show along with the other guys and we went and had a great time.

Maggie was a bit intimidated because these were the older cooler guys and she was the young tag along. They never treated her as such, but I could see how nervous she was. The more we hung out with them, the more comfortable Maggie was. In fact, I began to feel uncomfortable because I was the only parent. Each of them had someone young and cool as a companion and Maggie had her old mom. I felt like the old tag along - but they never treated me like that either. It was a welcoming group that gave Maggie's last year or so a new depth and provided much needed recreation. We went to the park, to baseball games, and bowling. Maggie loved all of it.   Here they are bowling at either Clay's or Ben's birthday party. We went for both birthdays, and I'm telling you those guys are bowling sharks.

Thanh, an accomplished artist has been telling me lately that she was preparing something for Maggie. I didn't know what it was, but last night she sent me this video, which I will treasure always.

Thank you, Thanh for this wonderful remembrance and thank you and Clay and Ben and all of you for being her friend and making her last year so much fun. You were friends indeed. 

Wednesday, April 8, 2015

First, Have some charm

The basic tenet of the Hippocratic Oath is "First do no Harm." Doctors are there to help, not cause more damage. Perhaps that needs to be applied not only physically, but emotionally as well. Hence, the title of this post, "First, have some charm."

Someone needs to teach doctors some tact and manners. Not all of them, of course, but it only takes a few bad apples to make the whole bunch seem spoiled. Doctors are smart. Doctors are busy. But doctors are caring for people at their most vulnerable moments and because they are smart they need to remember that, no matter how busy they are.

My husband and I are the first responders for issues involving my father in law. He lives closest to us and that's what makes the most sense. We are happy to do it and he is very appreciative. Our past experience often comes in quite handy because the similarities between managing Maggie's care and managing my father in law's care are astounding.

Maggie as a disabled child was often ignored by the doctors even though she was the patient. Not doctors who knew her, of course, but doctors who didn't, for example those in the emergency room, or young residents when she was in the hospital . They would talk only to me and not even attempt to engage her. Obviously I spoke for Maggie so that was somewhat understandable, but a comforting word or pat on the arm would have been nice, not to mention the courtesy of telling her the plan. They assumed she didn't understand, which was wrong; but even if she didn't understand, take the time to speak comfortingly and engage your patient. Generally I held my tongue because it was easier. I am a big believer in the adage, "you catch more flies with honey."

[Note  all of Maggie's former medical providers just fell over laughing at that. I was not always the nicest person in the world, but I really did let a lot of little things go, so I could save steam for when I really needed to blow my top.]

The same thing happens with my father in law. He too is now disabled, but the issues in this case seems much more age related than disability related.  This morning he was taken to the hospital from his assisted living residence. (He is already back at home and is fine.) Steve actually arrived at the hospital before his dad did. Steve learned from the paramedics that Dad was ok - in fact they didn't think he needed to be transported to the hospital at all. (Separate issue altogether).

Shortly after arrival the young ER doc enters the very small room with my father in law right there awake and alert and probably not even needing to be there. Instead of finding out the situation he immediately starts talking to Steve asking, "How far do you want us to go? what is the plan here?"

 He might as well have said, "are we going to bother with this old guy at all?"

Really doctor, this is where you START? How about a question like, well, sir, what brings you here today? Oh, you can't hear me, ok I will 1) speak up or 2) get the story from your son and then we will decide the plan together. Instead he disregarded my father in law completely and wondered aloud if they should bother to intervene at all.

 Steve brought the doctor out of the room and let him know that wasn't cool, and the doctor said he got that from Steve's body language. That makes me laugh because I can well imagine what that looked like. Eyebrows UP, head cocked, chin tilted just so, arms folded..... We can only hope that doctor learned something from that body language.

Everyone knows the medical system is flawed. This event could have easily been handled at an urgent care site without involving the ambulance and paramedics and the unnecessary expense. Instead the resources are strained to handle this non emergent matter. Then when he arrives at the ER, the doctor treats him like he is not worth any time or effort despite his relative good health.

I wish I had a silver bullet to fix the medical system, but I don't. Fixing the attitudes is easier. Or it should be. Doctors: Treat every patient like you would want to be treated. Every patient, young, old, disabled, sick, afraid, hypochondriac, mentally ill and everybody else.

It's the Golden Rule.
And it's charming.

Tuesday, April 7, 2015


Holidays are hard. Easter, the most joyous of holidays, was hard.

Not for any particular reason and not because anyone said any thing wrong. Perhaps it all becomes a little more real on holidays. They present an opportunity to sit down and reflect and remember, something I seem very capable of avoiding.  It's another time the family gathers and Maggie isn't there.

This year none of my kids were at Grandma's house for brunch. Tim was working and Eddie is in Southern California. While I always wish they could be with us, their absence doesn't hurt like Maggie's does.  They are out living their lives exactly as they should be.

Maggie lived her life exactly as she was supposed to too.

 I just wish she still was.

I miss that girl.

I miss knowing my role in the world when she was here.

Here's to remembering Happier Easters and Maggie's giant laugh
She's laughing because she just realized that's her brother Eddie in the Easter Bunny suit

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