Those four little words

On this Saturday before Christmas. I went downtown to see Union Square, the Macy's windows and all the other decorations. I was with my sister Mary and we were not trying to buy anything, we were just enjoying the Holiday energy all around us. We walked over to the Westfield Mall to get a look at the dome from the old Emporium store remembering it from our childhood.

As we approached the dome, I heard a woman ask a question from my right side. I didn't even see her because I was looking at Mary who was off to my left. But I heard four little words that I haven't heard in so many months and knew she was talking to me. She asked,

 "Are you Maggie's mom?"   

I turned and looked at her, she was smiling and friendly looking and looked like any number of women I know. but I didn't recognize her. I simply said,  "Yes, I am. Do I know you?" She introduced herself to me as a reader of this blog and recognized me from the pictures?!?!?! Her name is Marilyn and I cannot begin to tell you how much she made my day. I am always glad to know people are reading this, but to hear that question again was amazing. (And my sister thinks I'm famous!)

In my many years on this planet, I've been many things, daughter, sister, friend, niece, aunt, godmother, wife, mother, lawyer, chief cook and bottle washer and so many other things. The one role that defines me above all others, though is being "Maggie's Mom."  

This does not in any way diminish my role as mom to Eddie and Tim, and they know that. People don't address me as "Eddie's mom" or "Tim's mom"; but being "Maggie's Mom" is something else. It describes a role I had to invent and reinvent over and over again. It describes the hardest and best job I ever had and one the I miss every single day.

At an event last year I was being introduced someone that I knew before but didn't remember from where. The person introducing us wasn't helping us make the connection and we fumbled through the first part of the conversation.  When I realized who she was I said, "Oh, I remember you, I'm Maggie's mom." And THEN she knew who I was. The person making the connection said, "Oh, I wasn't sure if I could still call you that." I didn't say anything at the time, but I'm not gonna lie, that one hurt a bit. I simply said "that doesn't change. I'm still her mom and that's how people know me. Maggie was a superstar and I am her mom." 

And today a lady name Marilyn recognized me, and remembered my superstar and said those four little words I love to hear.  Thanks Marilyn, you made my day and my Christmas.

The answer is Yes. I am Maggie's mom. Now and always.

Light a candle

Today is the second Sunday is December. Those who celebrate are getting ready for Christmas or any number of other Holidays or this year are in the final days of  Hanukkah.  In addition to all of those celebrations, today there is a different celebration sponsored by the Compassionate Friends.

The Compassionate Friends is a worldwide organization that provides support to people who have lost a child or sibling. A friend invited me to a meeting a few months after Maggie passed away and I went somewhat reluctantly. To my surprise, I find it helps.  I found a group of people who really understand what I'm going through because they are going through the same things.  They understand that it doesn't go away in a few months or a few years. In fact, some have been coming for over 20 years.

The "children" or sibling of the attendees were of all ages and the ways their lives ended vary dramatically. Neither of those thing matter, though, because a parent is not supposed to lose a child. It is not supposed to happen, but it did -- to everyone in the room. Whether you understand that or not, there is comfort in the connection. I feel better when I go to the meetings, which only happen once a month.

On the second Sunday in December there is a candlelight ceremony sponsored by Compassionate Friends at 7PM in every time zone around the world. They honor all the children who have preceded their parents or siblings.   Tonight in the Bay Area, there is one in Novato and in South City or San Bruno and probably other places as well.

Though I love the idea of this ceremony,  I am actually not going to attend either one because in all honesty, it will make me too sad. I have learned what works best for me and protect myself by staying within those bounds. The ceremony and ritual are good or me, but doing things publicly is not. I want to honor Maggie and the other children but don't want to be overly sad, so I will do it my own way.

At seven o'clock I am lighting a candle for Maggie and for all the other children of the world who have gone before their parents.  I do this not only to remember the children but also for all the other parents around the world who find themselves in my position. Everyone is welcome to join in.

They are remembered and their light shines on.

Holiday Happenings

Christmas is coming and the social calendar is full. It's not that we are flitting from party to party, but there is definitely a lot going on. That's a good thing because it is very easy to get melancholy now.

Steve and my brother in law Vince delivering toys

On Saturday Steve participated in the HO HO HO Row for the second straight year. Several of the members of the South End rowing club dress as Santa or one of his elves and take boatloads of toys from San Francisco's Aquatic Park to Pier 39 where they deliver them to the San Francisco Fire Department for their annual toy drive. It is a fun event for a great cause and really puts you in the Christmas spirit.

toy loaded in Steve's craft

Here come Santa Clauses

Saturday night was Steve's annual office party/dinner; but as we were getting ready we learned that Steve's dad had fallen and was en route to the hospital, so plans changed at the last minute. His dad is banged up, but ok. We took him back to his assisted living facility and then made an appearance as the party was winding down.

Sunday we took a drive down to Los Gatos to a Christmas tree farm which is owned by Steve's friend Eric. That place was amazing and a hubbub of activity two Sundays before Christmas. Everyone was enjoying themselves. Families with kids, older couples, young couples. It was great.

We only stayed a little while, though, because I had 12 people coming for dinner. My niece Mary Clare was in town and we threw together a dinner for whoever could make it. One of the many nice thing about having a big family is no matter how many can't make it, you can always raise a crowd.

All of these things keep us busy and hopping, which is good. Staying busy keeps some of the sadness at bay. The Holidays are a hard time when someone you love isn't here any more. Opening up boxes of Christmas decorations and seeing things Maggie made or loved is particularly heart wrenching. It just stops me in my tracks and I walk away from the decorations for a while.

But then I remember how much Maggie loved the hustle and bustle of the holidays and it gets a little easier. I have video of Maggie and Tim decorating the tree (see Maggie World: Tree by Maggie) and  countless pictures and memories of the laughter we shared at this time of the year. And that makes it better.

But I do miss my favorite elf. 

You Can Go Home Again, or at least Next Door

taken from next door

When I was a kid my parents built a house at Lake Tahoe. We spent the entire Summer up there with my mom and my dad would come up on "weekends." (Because he was self employed, the term "weekend" was however he chose to interpret it.)  Those were fun years. We swam in the Lake, went barefoot all summer and just had a great time.

We practically lived outside, especially on the giant back deck of that house.  My sister recently found this picture of me on the deck, probably late 70's or early 80's I'm guessing.

Tahoe is a year round place so there were many ski weekends up there too. Generally those were without my parents as my dad was not a fan of the ice and snow. One winter of being snowed in for several days was enough for him. As we entered young adulthood that was really ok. We had a lot of fun in that house.

As we got older and had families of our own, we would come up there with our kids too. They had just as much fun as we did. We always took a picture at the same place on the deck, in fact the picture above is the same spot from a different angle. I know there's one of  Steve and I just after we were married and one after Eddie and after Tim was born. I could find those if I really search, but we will have to settle for this one from 1994, the year Maggie was born. She is five months old in this picture, but spent the first 3+ months in the hospital. And if memory serves me correctly, we made a run to the Truckee hospital the very night this picture was taken
.

Steve, Maggie, Eddie (6) me and Tim(4) August 1994

 As it turned out, Maggie couldn't really handle the altitude (Tahoe is at 6500 ft), so we didn't go up there much once we figured out that was the reason she got sick every time we went up there.

Time and life goes on and things change. My dad was also having trouble with the altitude given the changes in his big heart, so the house was sold in about 1999.

In an amazing coincidence, my friend Eileen and her family purchased the house right next door to my parents place at Tahoe. Not that it would have mattered, but they had no idea of my connection to the house next door when they bought it.  You can see Eileen's house in the background in this shot of my mom and I probably from my high school days.

 Eileen has let me stay there a couple of times, most recently last month when I went up to visit Tim. Rather then spend the weekend in a hotel in Reno, she suggested we use her house. I quickly agreed.

As luck would have it, someone was staying in our old house and I was able to get inside and look around. It was all updated and fancier than when we lived there, but really very much the same. It was basically a 2015 version of  a 1968 house.

The biggest change was to the deck where we always took the picture. Instead of a giant deck that wrapped all the way around the house, there are two separate decks. I'm not surprised. It was amazing that deck lasted as long as it did.  Despite the changes, the spot we always took the picture was right where it always was and I asked the folks there to take a shot of Tim and I in the exact same spot.

Both Tim and the trees are a lot taller and the view of the Lake is all but gone, but that's what 21 years will do. I was surprised to learn that his memories of the place are foggy, but of course they would be. He was really little when we stopped going up there, but he does remember a ski weekend with Steve and Eddie and some cousins. Maggie and I were probably watching chick flicks at home in the City. 

It was great to get to see Tim and spend the weekend in such a beautiful place, even enjoying the first snowfall of the season. And it was such a bonus to get inside our old house and remember so many fun times. 

Because Halloween, my brother

Happy Halloween everybody!

This was Maggie's Christmas, Birthday and 4th of July all rolled into one. She loved Halloween and all the crazy costumes Steve made for her.

This photo came up on my facebook "Memories" page yesterday and I had to laugh and send it to her brothers. This is a sentence she made on her talker one Halloween past

If you can't read it is says "Tim I am excited because Halloween my brother" 

It's been a long month of October anticipating this day and missing her more and more as it approached. But now it's here and all I can think of is her joy. That's a good thing.

Because it's a tradition, I offer you the parade of Maggie's costumes.

Have a wonderful enjoyable day...

"Because Halloween, my brother"

Party Day

I'm off to a party today. It is a party to honor Tyre, Maggie's friend and prom date. Tyre passed away a year ago this week, about 8 months after Maggie did. So the two of them are together. Today they can look down on all of us and giggle, which is what they always did when they were together.

Here they are as prom dates - though this as taken in Tyre's hospital room. He couldn't get out in time for the prom, so we did pictures in his room. It's one of my favorite pictures and is displayed in my dining room. I absolutely love the way he is looking at her.

.

I'm not going to pretend that this will be easy, because I know it won't. It will make me sad, but it will also be fun, Not sure that makes sense to everyone. I have learned, though, that things can be fun even when they make you sad. I know I will see lots of the therapists that worked with both kids as well as teachers they shared and perhaps families we all knew.  These people were an important part of my life for a long long time, and in a way I lost them too

So I am re-entering Maggie's World for a few hours today.  I miss being part of it.

Telling the Neighbors

We have lived in this house since 1987, which is a very long time. We know our neighbors, some better than others,  and have either nice conversations or pleasant encounters depending on the relationship. I can honestly say we don't have any bad blood with anyone.

Many of these people I've know for many many years, other I've seen but don't know very well at all. It's so weird to have to tell them about Maggie. It goes without saying that Maggie was pretty well known, or at least well recognized,  in the neighborhood. If the wheelchair wasn't enough, Maggie was outside for several minutes each morning as we waited for the school bus and every afternoon when she arrived home. This day in age, that's rather unusual. You barely see most kids. Folks would wave at her and she would wave back when I prompted her.

It's a strange responsibility to tell neighbors you see but don't really know. One neighbor from the next block was walking by some months ago and said, "I haven't seen your daughter lately." When I told him she had passed away I though he was going to cry. I wanted to hug him for asking and for his sweet reaction too.  I avoided telling a woman I know up the street when she walked by asking how everything was because her little kids were with her. I didn't want to upset them and figure that is news for a parent to tell (or not tell)  a kid. Later that day I went up and knocked on her door to tell her and her husband.  Let me tell you, there is just no good way to do that.  

Recently I have had encounters with two neighbors I don't know very well. Both are older than I by 10 and probably 20 years One lives up the street and is something of a socialite. The other lives a couple of blocks away and is the dog lady of the 'hood. The socialite  has always been very pleasant to me, but I don't really know her very well. She has some sort of non profit that purportedly helps the disabled, but I've never really been able to suss out exactly what service they do.  Because of that she loved to talk to me about Maggie. Many of her notions of  and terminology about dealing with the disabled are terribly out of date, but her heart is definitely in the right place. The dog lady is something of a know it all, but also very pleasant. Everything relates to dogs. Everything. And you can be pretty sure that whatever you are doing with your dog isn't quite right, but she's happy to instruct you how to do it better. After months and months of quickly waving and ducking inside I had to tell them about Maggie.

I ran into the dog lady at the corner market a couple of months ago and told her Maggie had passed away. Of course she was very kind, but then said she knew how I felt because she had to put her dog down. I just walked away. She was completely clueless that maybe her comments were inappropriate, and I'm sure she completely equates the two situations. I don't. I experienced both situations in the space of a few short months and I can assure you they are very very different. I've run into her again at the park now and then and she has decided I will never feel better - ever, as long as I live and tells me that. Now I do my best to avoid her.

The socialite was a different story. She was walking by the house, which may be a first in the 28 years I've lived here. I've never seen her outside her car unless it's right in front of her own house. I decided it was time to tell her about Maggie. She was lovely, though she used a few of her out dated expressions, I took no offense. She's very sweet, but it's just too hard to take.

A day or so later I found a note in my mailbox that had a bow around it. I though we were invited to a wedding or something. It was just a lovely handwritten note offering her condolences and her insights into losing a loved one, especially a person with special needs (not her words). It was really quite extraordinary. I realized though that had she said those things to me in person it would have been really strange and at the same time if  the dog woman left a note stating her observations it probably would have been quite lovely. Sometimes the medium can make or break a message.

I don't have a pithy ending for you. I'm just relaying another strange layer of this world I live in. As you get farther out in your circle, it becomes a different kind of strange. The inner circle of family and friends knows and tells the next circle of people for you and that continues as long as there are people we know in common . But then there are the outliers, the people who aren't really our friends, but acquaintances. If we don't tell them they won't know and Maggie was a tangential part of their lives too.

It's just so strange.  And it really doesn't get easier.