Thursday, April 17, 2014

Ahhh, to be sure

We had the "save the date" magnet on our refrigerator for months. In fact nearly every time Tim passed it, he commented on it out loud in an Irish brogue. "Patty and Sean are getting married. Ahhh to be sure." That made me laugh every time.

Patty is Nonie's daughter. And Nonie has been my best friend since I was 6 years old. Steve and I were really looking forward to what promised to be a great party.  But it was not to be.

 About 48 hours before the wedding I knew I wouldn't be able to go. Patty's wedding was on February 16 and Maggie's incident happened in the early morning hours of February 14 - Valentines day.

Our families already knew things were critical and by Friday afternoon our worst fears were confirmed and I updated everyone with the grim news by email. As I wrote it, I thought of Nonie and Patty and all the plans and the final countdown. I knew there was absolutely nothing Nonie could do for me or Maggie and there was no good that could come from telling her what was happening. They were so excited and this news could only pop their balloon. I told my family to circle the wagons and keep this within the family because I was bound and determined to let them get through that big wedding before telling Nonie.

This sounds generous, but I assure you it was a bit selfish. It gave me a purpose. It gave me focus. It gave me something to control in a situation that was completely beyond my control.  In fact it became something of an obsession to me.

Of course not telling Nonie presented two other problems, One, I had to keep it from my other good friends Lori and Sharon who would be attending the wedding. It would be too hard for them to put on a happy face for the wedding. That was doable, but I felt kind of bad. Two, I had to somehow convey to Nonie that we couldn't come to the wedding without letting on what was happening. We were seated at her table and it would be pretty bad to just not show up.  All I can say is thank God for text messaging. I waited until about 5PM on Saturday afternoon to text Nonie, knowing she would be too busy at that point to call me. I told her that Maggie was in the hospital and she texted back her disappointment.  That was about four hours before Maggie passed away.

We went home from the hospital late Saturday night sad and in disbelief. The word was already starting to leak out. San Francisco is a small town when you are a native. Everybody knows everybody else. One or two people put something on facebook, but with or without my obsession to keep this information from Nonie, I was just not ready for that onslaught. I thanked them privately and deleted their posts.  Grace, Eddie's girlfriend, helped me lock down my facebook so no one could post on my wall.

The wedding was at 3:30 on Sunday and the reception started at 5:00. I figured if I could keep it under wraps until the reception started I was good. My family did as I asked and kept it to themselves. As the day wore on, friends of the boys were getting word and it was showing up on facebook. I was losing control of things, but that was inevitable. It was time to tell people and to face the onslaught. I waited until about  8PM on Sunday night and then I posted the news on my blog and linked it to facebook.  I figured if some jerk at the reception was reading facebook and made a point of telling the mother of the bride, there was just nothing I could do about it.  We were ready to handle the attention - well,  to be honest, no we were not; but we knew we couldn't delay any longer. The condolences poured in and gave us a lot of comfort.

Monday was President's day. I texted Lori and Sharon early in the morning and asked them to call. Lori, the early riser, called right away. She said the wedding was great and asked how Maggie was doing. In a strange way, that made me feel good because I knew then that they didn't know. But now I had to tell her. I don't think I said more than, "Well, that's why I wanted to talk to you.' She heard my shaking voice and knew immediately. I only remember her saying Oh NO.   I told her Nonie and Sharon didn't know and she promised to keep it to herself until I talked to them. Sharon called about an hour later and I repeated the same thing. It was so so sad. They are such great longtime friends of mine and it hurt to tell them.

I was going to wait until about noon to tell Nonie. I figured there would be some sort of after wedding brunch so there was just a little more time to go. People started arriving here and I lost track of time. There were a steady stream of visitors and lots of love and food and flowers arriving every minute. Steve left to ride his bike or walk the dog or something and suddenly he was coming back in the front door saying,  "Sally, look who's here." Nonie was standing at the door crying -- and she's not a crier.
Seems I forgot that Nonie has my blog emailed to her. She asked her husband to check her phone for something and saw his face drop. But that wasn't until Monday morning, after the wedding but before the brunch. Mission accomplished. She said she went through the brunch like a zombie.

As she stood in the doorway, Nonie said simply, "I know what you did. You didn't say anything because you didn't want to spoil Patty's wedding." Well, yes, that's true. What possible purpose would that serve? You couldn't help me and all I could do was hurt you. But it also gave me something else to think about, something else - ANYTHING else to focus on. Knowing there was happiness in my world to balance out the tremendous sadness was a big help. She didn't believe me at first, but I think she does now. It really helped me a lot.

She offered some fantastic flowers and I marveled at her ability to get that done so quickly, but she said, "It's Patty's bouquet." I asked, "doesn't Patty want Patty's bouquet?" She said "No, she wants you to have it. OK she doesn't know that yet, she's on her way to Hawaii, but I know that's what she will want." (We are drying that bouquet for her.)

When you've been friends for 50+ years there are a ton of interconnections. I know all of her secrets and she knows mine. We made our First Communion together when we were 8 (picture). We unintentionally had matching dresses one Easter in about the third grade. We broke a lot of rules in High School and traveled through Europe together in 1980. We were in each other's weddings. Ironically we both had two sons and one daughter. I am the godmother to one of her sons.  When I was paying for Patty's wedding gift a few weeks before all of this happened, I laughed when I realized it was the exact same thing Nonie gave me as a wedding present 28 years ago (Waterford salt and pepper shakers). Still, having our daughters' happiest and saddest days intertwine was just macabre. Nonie said it best. She said it is like a bad TV movie on Lifetime or something. When it ended with this you would just yell at the TV and say, "Oh c'mon. That is BS."

Patty's thank you note arrived the other day and it made me cry all over again. I know I will get to a point where Patty's wedding makes me think of Maggie and smile instead of making me remember the worst few days of my life.  I will think how Patty and Sean saved us by giving me a positive things to focus on.

And I'll do it with an Irish brogue just to bring to things full circle.  "Patty and Sean got married....Ahhhh, to be sure."

Flying free

My sister sent me this picture the other day. I'm not sure I ever saw it before. It is from Lake Almanor in 2002. My family and Joni's family went on vacation together and had a blast.

Joni and Vince had a boat and we took Maggie out for a ride. We sped around the Lake for quite a while. I was a bit frantic and held onto Maggie for dear life; but as you can see, she LOVED it.


Thanks for this picture Joni. What a great memory.

Tuesday, April 15, 2014

Shooting stars

 The first few weeks after Maggie passed away were absolutely crazy. There was the service to plan and attend, visitors by the dozens, cards arriving every day, phone calls etc. I've written many thank you notes and have many more to go. Please know I appreciate whatever you did for us, and eventually I will formally acknowledge that. I find the energy for those only sporadically. The hubbub has tapered off at this point.

Now, it's quiet. Very quiet. 

We still receive cards in the mail, and I have to say I treasure every single one. They are all sitting in a basket in my dining room that is overflowing with cards and love.



 As I drove up the other day I noticed a manila envelope on the front porch. I opened it to find a bound copy of the screenplay to the movie "Jack"  autographed by Robin Williams, who starred in the movie back in 1996.  The screenplay was a gift from my friend Joanne. Though it was very cool, I was initially puzzled by it. "Jack" is the story of a boy with a rare condition that causes his body to age four times faster than it should. He is physically an old man by the time he graduates from high school. Her card indicted that she had marked a couple of passages in the book that made her think of Maggie. When I read them I had to agree and I want to share those with you now. The passages are lovely, but so much cooler in the screenplay format that I am including that as well.


                                            Woodruff (Jack's teacher)
... Did you ever see  shooting star Jack? Oh, it's wonderful. It passes quickly, but when it's here it lights up the whole sky. Most beautiful thing you'd ever see... It's such a beautiful sight that the other stars actually stop and watch it. So spectacular that people wish upon shooting stars. And they're very rare, quite rare. You almost never see them. But I did. I saw one...

His eyes hold on Jack.  Jack's eyes gaze off.

                                                     Jack
        I just want to be a regular star.

                                                 Woodruff
        Jack, you're not regular at all, you're spectacular

Then later in the play Jack, who is physically a 72 yer old man, is giving the valedictory address at his high school graduation.

                                                      Jack
As these final days wear down, we think of times forgotten and we pray for new beginnings. And some of us worry about our future. What am I going to do? Where am I going to be in 10 years?  But I say, let us not worry...

Woodruff stands, proud of his student

                                                      Jack
...Because in the end, none of us have very long on this earth. Life is fleeting. And if you're ever distressed, cast your eyes to the summer sky, when the stars are strung across the velvety night, when a shooting star streaks across the blackness turning night into day, make a wish and think of me.  Make your lives spectacular.
                      (a beat)
I know I did.


Thank you Joanne. This meant more to me than you can know.

Wednesday, April 9, 2014

Van



I made a half baked attempt to see Maggie's van a few weeks ago, but didn't really follow up. A family was interested and I just kind of waited for them, but they decided no. So it sits in front of the house. I guess I wasn't really ready. Now that the bed has gone I just want to get some of this over with. I know it will be difficult, but it is crazy for this perfectly good vehicle to sit here with no one making use of its wonderful attributes.

I am not interested in making this blog a market place, but I know there are lots of members of the disabled community in this audience, so I will link this to the craigslist ad for the van. Please share if you are so inclined

If you are interested or know someone who might be, please get in touch. I will entertain all reasonable offers.

http://sfbay.craigslist.org/sfc/cto/4414655536.html

Hopefully this will be followed by a post telling you how much the van meant to us (a LOT) and how sad we were to see it go.

Sunday, April 6, 2014

Beddie bye

When Maggie was outgrowing a crib we worried about how to keep her safe in her bed. She would fall out of a regular bed 10 times a night. Bed rails were not enough because they didn't cover the entire bed.  Maggie moved constantly and could maneuver herself into the strangest positions. Keeping her mattress on the floor did help because we had to work with her all night long and that would be impossible.

Enter Steve, aka Gepetto. He made her a bed that was high enough for the nurses and us to help her without bending, but secured all the way around so she would be safe. It was basically a giant box that fit a single bed mattress inside. Plus, since we were long on supplies and short on space, Steve built drawers underneath so we could easily grab whatever she needed at any given moment. The drawers stored and hid feeding bags, meds, suction and oxygen supplies, gloves and a host of other things. Some of the drawers even had clothes in them. It was perfect.

Of course Maggie easily figured out how to undo the simple locking system for the sides of the bed and did fall out once. That was an unpleasant day. She was unhurt and Steve changed the system, and added a complicated hook and eye to the top making it "Maggie proof" (though she was working on it and if she had more time she would have mastered the slide and pull method needed.) I took this picture one day as she worked steadily at it.


Maggie spent a lot of time in that bed. Obviously she slept in it every night and just about every procedure she needed was done there as well. Every diaper, trach or feeding tube change was there as were most medications. Sometimes she just hung out in bed listening to music. When she wanted out he would start slamming on the side of the bed. I was never more than few steps away and I would go in and ask her what the hell she thought she was doing and she would laugh her head off.



I miss that.

Maggie's room is on the main level of the house. It was once the breakfast room - not nook, mind you, it's a good sized room. It has a bathroom attached and opens up to the back deck and the elevator. We have to go through it 100 times a day. I don't really have the luxury of leaving her room intact and I don't want any sort of shrine. Some parents do, and that's perfectly fine. Whatever gets someone through this is the right thing to do. For me it is more painful to see it uninhabited. The equipment was the first to go and that took several weeks. In fact there's still more in the garage. Some, but not all of her clothes have gone to The Salvation Army as have some of her stuffed animals and decorations. Many of her things are in boxes to be dealt with when I'm ready and there is still more stuff in there, including the magic bed.

Or at least it was until yesterday. We gave the bed to a family with another disabled child who will make good use of it. The idea of that made both Steve and I very happy. The reality of the bed leaving was a different matter altogether. After they left with the bed we both broke down. Now there is a giant hole in the room where the bed stood. We didn't think that part through.

It's just a bed, just another thing among thousands of things that are significant. I don't need the bed to remember Maggie and her presence is strong in this house regardless of the things that change. Still, its departure is a difficult jolt of reality.

We are not sure what we will do with that room. It is a bright sunny spot that will eventually make me happy instead of sad. I know it will never be the same as it was, but it will be ok. And no matter what, I will always picture Maggie watching me from the bed.




Tuesday, April 1, 2014

Bad to the (tail)bone

I received an email from a nurse at UCSF which I will share in part below. But first some background. She and I are working together on a project, but really don't know each other well. When we had our first meeting, she said she thought she remembered me from a talk I gave when she was a student. I participated in several panels with other parents for various groups over the years (and hope to continue to do that.)  That particular panel was several years earlier and she described me perfectly. When I confirmed it was me, she told me that was her best day in training. Needless to say, that comment made my day. This discussion was a couple of months ago, before Maggie passed away. Today she made my day again.

This is part of the email I received today. It is perhaps the greatest compliment I have ever received.

Maggie was so loved by so many people; her family, friends, and nurses. She was so lucky to have you as her mom. I remember so clearly listening to you when you spoke to my class about Maggie and your family. Everything you said was so honest, beautiful, and loving. I remember thinking to myself, "someday if I get to be a mom, I want to be brave, loving, strong, and bad ass just like Sally." 


That's right: Bad ass

Stand back.

Monday, March 31, 2014

Relaxing getaway or Theater of the Absurd?

Ever since Maggie passed away, Steve and I have tried to get away for a weekend. It was always so hard to do that before because of the logistics of Maggie's care, but that is no longer an issue. Still, getting away is not easy. Every weekend we have had some engagement or obligation that kept us in town. Last week we realized we had an open weekend coming up and we took advantage of it. We went to Yosemite.

Because of the 11th hour, getting a reservation in Yosemite Park itself  was impossible. We stayed in Groveland, which is about as close as you can get but is still a good 30-45 minutes away. It worked out perfectly, though and we had a great time.

There are several stories to share from this weekend, getting away on Friday, finding the charming hotel, seeing the devastation from the Rim fire, going to Yosemite Valley, Sunday in the gold country of California and more. But I'm gonig to start in the middle of the weekend. The best story comes as we were leaving Yosemite Valley on Saturday night.

 Saturday was supposed to be raining and we were lucky to get so much time in the park without dodging raindrops. The storm finally hit as we were headed back to our hotel about 8:30PM. Leaving the Valley is a climb for about 20 miles. The elevation changes rapidly from about 4000 feet to over 6000. First we hit very strange and low lying fog and then it started to rain lightly as first, then harder, then it was sleet and as we climbed and the temperature dropped it turned to snow. It was snowing hard and piling up quickly. We didn't see another car for miles, which was creepy

Steve is a good and careful snow driver, but we had his new car with which he is not completely familiar. The car has 4wheel drive, which was great, but we did not have any tire chains with us. It was hairy but we just kept moving. As we slowly worked our way down a hill, we came upon a car that had slid out. Another car was stopped as well. We asked if anyone was hurt, and thankfully the answer was no.

The driver had simply lost control of the car in the snow and could not move it. They were a family from India and they were abandoning the car right there on the side of the road. The other car had two men visiting from Texas who were trying to help. They had the two older people in their car but could not fit the remaining couple or any more of their belongings. We offered to take the other two and their things with us. The decision was to head back to Groveland. They could stay in the hotel and figure things out in the morning.

The man driving the stranded car was young, probably mid 20's. He had his wife and his parents with him. He was trying so so hard to be in charge, but he had absolutely no idea what he was doing. It took him no less than 20 minutes to get everything out of his car and into ours. The snow is getting deeper by the second.  Steve and Wes, one of the Texans, were trying to impress upon him the danger of the situation as we sat alone on a snow covered road in the mountains, but he was oblivious.

Once everything was finally in, the passengers decided they needed to be lined up differently. We ended up with both women and the Texans had both men. The younger couple spoke English and I suspect this was done so that there was one English speaker in each car. The mom wept in the back of our car. We didn't see them spin out, but she was clearly frightened by the whole thing. I tried to reassure them and made conversation here and there. I learned the son is an engineer working in the Silicon Valley and his parents had just arrived from India for a visit.

We continued our climb out of the park, leaving their rental car behind. The trip back took 90 minutes because we had to go so slowly. After hitting the summit and descending again the snow eventually turned to a hard and driving rain. That was better, but still made for hairy driving When we arrived at the hotel it took this family at least an hour to decide if they were going to stay or not. They were concerned about the price of the hotel and asked us to take them to another place. There is no cell reception and they could not call around. We were at our limit of magnanimity.This is a software engineer who rented a BMW and was trying to get to Tahoe. The hotel was moderately priced.  It was hard to buy the financial story.

We tried to impress upon them that it was now after 10PM, they were soaking wet and their car was 90 minutes away. They were somewhat choiceless. The young couple then disappeared and ran in the pouring rain  to a hotel down the road to "shop." We could not leave because all of their belongings were still in our two cars so the Texans and the non English speaking parents and us sat there and waited. Eventually they returned because no one would even open the door at the other place. He admitted they "did not have any alternative" in his lovely lilting accent. Right, that's what we told you an hour ago.

We unloaded their belongings and Steve was getting visibly agitated. Soon I saw why. Among the suitcases and other things of theirs was a set of TIRE CHAINS that had been provided with the rental car. They had chains the whole time but didn't even know what they were for or how to install them. Frankly I doubt they would have been safe with those anyway because the guy had zero experience in the snow.

Meanwhile the Texans were trying to decide what to do. They could not get to their destination the way they tried and were debating stopping for the night or backtracking and pushing on. Ultimately they decided to push on and we said our goodbyes to them with a few laughs at the absurdity of the whole thing.

Steve and I returned to our room and tried to digest the whole evening. He was stressed from driving through that storm and he was irritated with the seeming lack of gratitude by the family. I disagreed, I honestly think that kid was trying so hard to be the grown up that he was rendered useless. They were not unkind or ungrateful, just overwhelmed by the situation. Still, they probably should have said thank you at some point.

We decided it was really kind of funny. We finally manage to take a weekend to take care of ourselves and relax and recharge our drained batteries and this happens.  When we heard the family moving into a room across the hall with all their belongings, I told Steve I sure hope they keep those tire chains safe. That sent up into peals of laughter.

I said who would even believe this story? A sudden blizzard, a stranded family from India, good Samaritans from Texas, a harrowing ride through the storm and craziness when we arrived. Not exactly the relaxation we sought, but still an adventure. Steve said, "Look at it this way, we actually had an adventure with cowboys and Indians."

I can tell you that a belly laugh is pretty good medicine in its own right.