Saturday, June 28, 2014

Hope for a Sea Change

My friend and fellow blogger Elizabeth Aquino has published an excerpt from her memoir Hope for a Sea Change. It is a fascinating, exquisite story of the earliest days of her daughter Sophie's life. Sophie, like Maggie has a life of doctors and disabilities.  This is a must read for anyone in Maggie's World.

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Friday, June 20, 2014

Aren't you glad you asked me here...

Yesterday I had the opportunity to participate on a panel with two other moms. All three of us lost a child in the last year and the panel was part of a two day course at UCSF for medical providers on end of life issues. As the day approached, I was really questioning my decision to do this and kind of dreading it. But I am impressed that these health care providers want to hear from families. There were about 50 medical people taking the course, mostly nurses. Each of the three moms on the panel recognized one or two people who had worked with our kids.

I'm not going to lie. That was a heavy 90 minutes.

I think there were times when everyone in the room was crying. We discussed the end of life issues involving out own children and what the staff did right or wrong what could have been done better . They want to get things right, even when they can't fix the medical issues.

Though it wasn't specifically applicable to what actually happened at the end of Maggie's life, I took advantage of the opportunity to address some of the disability bias she had experienced in the medical world at other times she was in medical peril. I felt I owed that to Maggie and to her disabled peers. I cautioned the audience to treat their disabled patients with the same respect as the non disabled and to make medical decisions solely on medical grounds, not on unrelated disabilities a patient might have.

I told them about the surgeon refusing to do a relatively simple procedure on Maggie and then saying right in front of Maggie, "You didn't expect her to live forever, did you?*"  I told them about doctors asking me how much intervention I wanted for her for a given malady that required nothing more than simple antibiotics. I told them about reminding some doctors they would never ask these questions if I brought in one of my sons with the exact same symptoms.  I told them that the subject of a DNR (do not resuscitate) is broached far sooner with a disabled patient than their non disabled peers. I also told them that  while "quality of life" is a real issue for medical personnel to consider in some cases, that it is open to judgement and bias and is a frightening slippery slope for the disabled and their families. I told them that many of the parents of Maggie's peers had been told to institutionalize their children because they would be vegetables. (None did and their children are thriving.) I told them to be aware of the bias against the disabled that is so prevalent in society and especially in the medical world. I told them children and families can adapt to anything - we are proof of that - and that they have to live the lives they are given in the best way they can. The medical world can and should help that to happen, not sit in judgement about the quality of those lives.

I didn't plan on saying any of that. I felt like Maggie was sitting on my shoulder saying, "mom, don't forget this and this, and what about that." And when it was over I was glad I participated and received a lot of positive feedback from the audience.

Of course those willing to take a two day class on this topic probably are the last 50 people who needed to hear it, but I was glad I got to say those things anyway.

All of the examples I gave really happened to Maggie in her life, but did not happen in her final days. There was no question about how that was handled and I told them that too.  The circumstances of Maggie's final days were different from those of the children of the other two panelists. It is likely that every single one is different, which makes it that much more difficult for the professionals to find right answers. What works for one family in one situation might not work at all for another.  Still each of the three of us believed that the personnel helped to make the worst days of our lives more bearable.


* this was in 2011. We went to another doctor who performed the simple procedure, fixed the problem and allowed Maggie to enjoy the healthiest two years of her life. In fact she never spent another night in the hospital after that procedure until the day she died.

Monday, June 16, 2014

My way or the cry way

One thing that scares me is gong to an event, a party or meeting or whatever, where people know about Maggie.  It doesn't make any sense, really, but I fear the kindness people show in expressing their condolences. Everyone is always very nice, so that's never the problem, it's just being in that position that scares me a little bit.

If I bring Maggie up in the conversation it's fine, or at least better. If someone else brings it up I quickly tear up and nod a lot. Obviously I appreciate the kindness people show as well as their heartfelt condolences, and I certainly don't want to be the one bringing it up all the time, but it's hard for me.

This is not useful to those who don't want to say or do the "wrong thing" because they are not wrong at all. This is my issue, not that of the kind people around me.

I feel like I am walking through the world with a protective coating. I can reach through it and still keep it around me, but if someone pierces that coating with kindness it falls off completely and everyone knows how vulnerable I am.  There's no shame in that. Obviously I'm vulnerable. I know I'm not really fooling anyone. Controlling the conversation or my emotions is not possible; but it's difficult when I lose even the illusion of control.

It happens frequently, but not always and I am more surprised at my reactions than anyone else. I anticipate the issue and the reaction and it almost never goes as I think it will. When I do "lose it" a bit, the reactions of others is interesting. Some push forward either oblivious to my discomfort or sure that I "need" to cry. Generally these are people who are not terribly close to me but feel they know what's best. Again, there is nothing but kindness and good intention but they are just reading the situation wrong or assuming a relationship that is not there.

The other night I attended a graduation party for my niece and one of the family friends said how sorry she was to hear about Maggie. Immediately I stiffened and my eyes welled up. She saw it immediately and said, "and that's all I am going to say about that."   I could have kissed her for that. Actually a little later in the evening I broached the subject with her and we had a lovely talk about Maggie that made me feel quite good - but the conversation was initiated by me, and  guess I knew I could handle it then.

I doubt this makes much sense to anyone, and it may not have any bearing on the experience of anyone else; but I'm trying to chronicle this process and I can only do that if I'm true to my way, even if it's a bit wacky.

Now excuse me while I reapply my protective coating.

And just because I was humming this as I typed the final sentences, here's Frank Sinatra singing My Way

Tuesday, June 10, 2014

News clip

Here's the Clip from the CBS 5 news story on the new UCSF Benioff Children's Hospital that will open Feb 1. It was sweet to see Maggie in there. This is just part of her legacy.

If I didn't do it right, here's the link

Silver screen to small screen in one week

Last week Hollywood.
This week the local news.
My entire 15 minutes of fame happened in the first week of June 2014

After my whirlwind trip to LA last week I came home to find out that the local CBS affiliate, KPIX Channel 5 in San Francisco, is doing a story on the new UCSF Benioff Children's Hospital and how families contributed ideas and suggestions for design and amenities. I was interviewed for the story last Friday and it will air tonight on the 6PM news.

Because the hospital is still under construction and the interviews were conducted on site, we are sporting hard hats and bright vests and wearing boots. That is just the look I want transmitted across the world.

To be honest I was a little worried that this could become a pity piece about me and Maggie, but I am quite sure that is not the case. The producer from Channel 5 was very respectful of that.

So you locals tune in, I will post a link when it's up

Friday, June 6, 2014

Mr. DeMille, I'm ready for my close up

Ok, that was hilarious and fun.

When I first heard about the documentary "Friends You haven't Met Yet" I knew I had to go to the Dances with Films film festival in Hollywood for the premiere.

I mean how often am I going to be in a move that's in a film festival. My original plan was to fly down there and back in the same day. I was going to have lunch and attend the premiere with Elizabeth who writes this wonderful blog.

My sister Joni decided that would not do and that she was coming with me and we were spending the night at our brother Eds place in the Valley and having some fun. I am so glad I listened to her because we had a blast. There were screw ups and miscues, like any whirlwind trip, but overall it was a hoot, made more so by Joni's presence and energy.

We arrived at the Burbank airport at around 11AM and Joni insisted I wave to the waiting crowds a we walked out of the plane. (Note, there was no one there)

Elizabeth did indeed pick us up and we had a wonderful lunch in Larchmont Village in LA. She told us it was a good place to see stars and though we stared at every passer by, we didn't see any celebrities. Elizabeth could not join us for the film but she dropped us off at the famous Chinese Theatre in Hollywood where the screening would take place. That is hilarious in and of itself. Throngs of people getting their photos taken with celebrity look-alikes and trying on the handprints for size.

When we entered the theatre we had to do the obligatory red carpet walk. At first it was Joni and I just fooling around,

then when Jesse, the director and Chris, the main focus of the film arrived, we did it for real.

Joni was taking our pictures and I was trying to tell her to turn around to see what was behind her, but she didn't notice that she was just one of the paparazzi.

The film itself was great. It was 33 minutes long an included about 6 bloggers like me who post frequently about their personal lives. (here's a link to the trailer that I posted the other day  Friends You Haven't Met Yet clip) I write the blog, I've seen the movie and frankly I'm still not sure why I blog so much or what my own expectations are for what people do with the information I put out there. But I do know it led to a great trip to Hollywood.

I will be getting a copy of the movie in the mail sometime soon. I was supposed to get it afterward, but that was one of our screw ups. We had to get our rental car before the place closed and then could not get back in time for the after party. That was our own stupid fault.

C'est la vie. I'm sure there will be dozens of other Hollywood movie openings for me.

I will do a follow up to include our visit with Brother Ed and trip around the beaches, and Beverly Hills. All in all it was 29 hours of fun. But I was T I R E D on Thursday.

I might have to talk to my agent and cut back on my tour dates.

Monday, June 2, 2014

Goin Hollywood

I am leaving on a jet plane....

Tomorrow morning my sister Joni is accompanying me to Hollywood to watch a movie called "Friends You Haven't Met Yet" about those strange people who blog about their lives.

People like me. People exactly like me.

In fact I am in the movie.

It is so strange to be able to do this. For so many years I just couldn't go anywhere, ever - and that was perfectly ok with me because that was my life. Though I would give everything to have that life back, it is different now. I can do things I couldn't do before. Ironically because of that change, I am free to go watch myself in a movie which involves me writing details about my former life when I didn't have the freedom.


Maybe someone should make a movie about that.

Oh wait....

I will report back when I return on Wednesday.