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:


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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. 




Saturday, February 14, 2015

A Year

Mary Margaret McDonald 
March 3, 1994 - February 15, 2014

So now it's been a year. A year is significant. We've gone through everything once. Not sure why anyone thinks that makes things easier, but we have survived an entire year. Though we are cocooning a bit, we thank you for the calls, texts, notes, and everything. So many of you - both friends and strangers - have been with us every step of this journey. It really helps, even if we don't tell you often enough

It doesn't feel like a year. It feels like a minute,and it feels like a lifetime.

I know in many cultures there are rituals and significance to the one year anniversary of a death. None of those apply to me, but I cannot deny the significance of this day.

Something that has been of great comfort to all of us in the past year is the way Maggie lived her life. She lived every minute of her almost 20 years on this Earth. We have focused on that and laugh remembering her antics. She was the brightest light in all of our lives.

Today is different. Today it's all about when that light went out. It was the hardest 36 hours of our lives. But of course it didn't go out completely. Even as we were there with her in the ICU there was laughter and light. Maggie had too much vivacity to have her light extinguished.

It shines on.


Oh! do we ever miss her.

Wednesday, February 11, 2015

Attitudes Included

Thanks for all the feedback yesterday. I received calls and texts and emails. I guess I really made folks sad with my Valentines tale of woe.  So today I want to share something more positive.

I had lunch with a friend yesterday who is also a parent of a child with special needs.  We talked about full inclusion at the schools and how beneficial it is not only to the child who is in special ed, but to the rest of the class. Everyone learns that there are all types of people in the world.  As these children enter the work force (which is happening now), they are better equipped to deal with disabled people because it is normal for them. It used to be the disabled were out of sight, but now they are part of the community, part of the classroom. That will go a long way toward erasing some of the disability bias that exists in the world.  It's slow, mind you. It takes a generation or more, but we are on our way.

Maggie was not in a full inclusion classroom, she was always in a special day class.  Her learning style was too complicated for full inclusion  (That was my choice, not something forced on Maggie or me.) I know other kids with comparable disabilities who do fine included in a regular classroom, but we felt Maggie would maximize her potential in a a special day class -- and she did. Maggie used her inclusion time for social purposes. The girl was the most social person ever and she was included with other kids for non academic activities such as field trips to the pumpkin patch in the first picture or wherever she was going all dolled up in the second picture. Every kid knew Maggie in every school she attended, so I guess she did something right.



I specifically chose pictures from Maggie's early school years because I remember two incidents from her elementary school days that demonstrated her place in the school and the other kids absolute acceptance of Maggie. A mom heard the kids greeting Maggie and said, "is this Maggie?"  When I confirmed it she told me her daughter kept talking about her friend Maggie and asked if she could invite Maggie over. The child never even mentioned that Maggie was in a wheelchair. The mom was delighted and so was I.  

The second incident took place one day when we arrived at school late, probably because of a doctor appointment or something. It was recess time and all the kids were out on the schoolyard. They could see us unloading the van through the chain link fence.  Our van had recently been adapted for Maggie.  I  lowered the lift and moved in to unlock the chair. The dog jumped out and started sniffing around as I positioned the chair onto the lift. Kids had gathered around the fence watching us intently and I heard them gasping and oohing and ahhing. They were just little kids, maybe second or third grade; but I distinctly remember thinking "Really? Even here at school?"  That was just for a second, though, because immediately one of them said, "Maggie is so LUCKY! She has a DOG!"

The dog set her apart.
Not the chair.
Not the talker.
The dog.

Those kids are in their 20's now. They are probably finishing school or out working in the world. They are or will be making the rules soon. That's a good thing.

I hope they all got dogs.


Tuesday, February 10, 2015

Be still my heart...

Valentine's Day is fast approaching. I see the pink and red hearts everywhere and it makes me so sad.

Early last Valentine's morning was the day of Maggie's catastrophic event when she stopped breathing and her heart stopped. She never regained consciousness and died the next evening. But Valentine's Day is the day we lost her.

Valentine's Day. A day set aside for love.  I suppose it all makes sense in some macabre way.  Everybody loved Maggie and Maggie loved them right back. She owned any room she entered because people were drawn to her exuberant joy and her obvious love of life.

But the day will be hard for us. I am back there over and over again every time I see the garish decorations - the ones Maggie loved.

We had Valentines all prepared for school. Those chocolate hearts wrapped in red foil from Sees Candies were for all the adults and the little boxes of candy hearts for all the kids. The chocolate hearts are now in the freezer - but I know we will never eat them. The boxes of candy hearts with sayings like "Oh you kid" and "I love you" are up in the cabinet.

A card Maggie and I made for Steve sat on the sideboard in the dining room for months.  It just said "Dad, you're my Superman" and there was a superman sucker next to it. I don't know what happened to the sucker. Last time I saw it it looked very old and faded. The card we still have.

What does one do with things like this? They are so packed with meaning for us. They make us sad and remind us of the worst day of our lives. But we can't throw them away. Not yet anyway. Strange, isn't it?
Valentines is forever changed for me. We still celebrate love, but now it is a day to remember someone we loved so very very much. And miss so terribly.



Sunday, January 25, 2015

In with the New, Missing the old



It is a big week in San Francisco. The new UCSF Benioff Children's Hospital (UCSF/BCH), as well as a woman's hospital and a cancer hospital are open for business on February 1. The project has been in the works for many many years. I have been involved in it for about the last nine years as a member of the Family Advisory Council at UCSF.

This is a big deal for this City. While there have certainly been remodels of existing hospitals over the years, I do not recall a brand new hospital (let alone THREE) opening in San Francisco in my lifetime. There will be lots of news coverage regarding this. I have already been interviewed by the SF Chronicle and will participate in a a press conference on Thursday. This is not the norm for me and it is a bit exhilarating.

But with one door opening, another closes. The current site of UCSF/BCH on Parnassus Ave will remain, but the Children's Hospital, which is located on three of the fifteen floors of that building,  won't be part of it. There's a lot of Maggie in that building. The place she received her care, the place her life ended will have a different role now.


Strange as it may seem, it feels like a little bit of a loss to me. Don't get me wrong, the new hospital is fantastic and will make things so much easier for patients and families. But there are so many memories in those hallways, some of them horrible, some of them great. It was a huge part of our life because so much of our life was spent there.

I work at the hospital two days a week and will move to the new hospital. People recognize that saying goodbye to Parnassus is difficult for many staff members. Folks were invited to take part in a video/slide show holding up a sign saying what they would miss. I saw signs that said things like "the fantastic views"(they are awesome) or "Sunday morning Bagels" or whatever other things. They were sweet. Though I'm certain it would have been welcome, I'm not sure any sign I might have held would have had the same light tone.

With all the loss we've experienced, this hospital move is really small potatoes. It is only a place where so many memories were made. The memories are still there, but the place will be different. But I have learned the importance of recognizing loss and its role.


I will miss Parnassus. Maggie spent time in every single room on 6Long or in either of the two PICU units at one point or another. My sons would spend time in there doing (or not doing) homework. They would play with the gloves and head down to the cafeteria to see how big they could make an Ice cream cone only to find out they charged by weight. (I think they are the only ones to make an $8 ice cream cone in the 90's). Steve would sneak wine for us to share while we ate takeout around Maggie's bed.  Maggie learned how to operate the bed and would make it go up and down even in her sickest days.

All of those memories will be relegated to the history of the building. No one there will remember Maggie or know any of us. New and better things are coming for the patients, but the history won't go with them. It is a bit like losing an old friend - or maybe more like saying goodbye to a teacher you didn't really like, but respected because you learned so much in that class.

Though ignorance is bliss, I definitely learned a lot in that place.






Friday, January 16, 2015

Going 'Round in Circles all the Time

Things feel different to me lately. Maybe it's because the holidays were so rough, maybe it's because the anniversary of Maggie's passing is rapidly approaching. I don't know for sure. But I know that I feel differently.

The first part of the grief journey is really shock, I suppose There is so much to deal with emotionally that one is simply on overload. Aside from the obvious emotional upset, though, there is so much more. The person who was the center of this household for 20 years was gone. Her physical presence was so much more than her person. The practical side of losing her was also daunting. Of course there were her clothes and personal items to deal with. And I will get to that, We had equipment and special furniture that we had to find homes for. We had to sell the wheelchair van and buy another car,  Her room was off the dining room and now sits underutilized because we don't know what to do with it.  We will get to it. All of it. Soon.  Or not.  The thing is, all of that takes time. We have been doing it all for the last 11 months -- slogging through emotionally and handling the practical things in somewhat of a fog.

For lack of a better description, we had to deal with the novelty of Maggie being gone.

It was new and different and terrible
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Now it's just different and terrible.

It has become real. And that creates a whole new layer of grief.

There is so much written about the "stages of grief" and I admit I have used them myself. The idea has some validity. However, they seem to suggest some sort of order or resolution to grief and that simply does not happen. At least not for me.

For those of you unfamiliar, the seven stages are

      SHOCK & DENIAL.
PAIN & GUILT
ANGER & BARGAINING
"DEPRESSION", REFLECTION, LONELINESS
THE UPWARD TURN
RECONSTRUCTION & WORKING THROUGH
ACCEPTANCE &; HOPE



Frankly, I think this model is better applied to a break up of a relationship or maybe to a lost job  than to a death - and especially to the death of a child.  Maybe some people go through these stages in an orderly fashion and feel better, but I am not one of them.  I jump through all or most of those stages randomly about 10 times a day in no particular order and start all over the next day.Admittedly the days that I experience more of the last three are better than the days that have the first four; but  I can't control it.

 Of course I accept that she has gone, which is the last stage of grief, but that doesn't make me feel any better.  There still isn't a resolution. People think enough time has passed. People don't want to see me sad.  People don't want to talk about Maggie to me. I get that. But no matter what people think, it's all still there.

Perhaps there is just a bit more depth to all of this than a pop psychology analysis. Perhaps the stages of grief are multi layered.  The best analogy I can come up with is the Earth's orbit in the solar system. The Earth is spinning on its axis and also making its rotation around the sun.



We have been spinning for 11 months now. Every day it starts again. We wake up and she's gone. We go to bed and she's gone. We sell the van, donate her equipment, slog through our days and keep going. We start again the next day.



But we are also making that slow trip around the sun. The seasons come and go (even in California). The days got longer and then shorter and now are starting to get longer again. Life goes on. And she's gone.  But we are moving forward - or at least in a bigger circle.

  Perhaps there isn't supposed to be a resolution.  Maybe my life is forever changed. And maybe, just maybe it is OK that my life is changed. The reason my life changed is not OK, but I have to recognize it that it has.  I can "accept" that, too.

So I will keep spinning and rotating and tilting this way and that on my axis. The seasons will change and the days will be longer and shorter. Maggie will still be gone, and I will be different, But I will keep spinning    


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