A great Noel

One of the perks of writing a blog is getting to know so many people from all around the country. I have made lovely connections with many other parents or siblings of disabled individuals or just people who read these stories. The connections are strong, even though I have never actually met many of them in person.

One such connection is Tamara in Alberta, Canada. Tamara's daughter Noel and Maggie had a lot of things in common. Both were disabled girls who were the center of their mothers lives and, sadly, both passed away far too young. Noel left us about six months or so before Maggie did. She was only about 16. Because of the similarities in their lives and our grief, Tamara and I have really connected - yet we've never been within 1000 miles of each other.  Some connections don't require face to face interaction.

One day in November I received a package. I hadn't ordered anything and it wasn't my birthday. What could it be? When I opened it I found this.

Tamara sent some people a pink cup with Noel's name on it because it would have been Noel's 18th birthday. She wanted to know that people would be thinking of her daughter on her birthday. I think it was a fantastic idea and I may do something similar in March. Even if they're gone, our girls are worth celebrating and what better day than the birthday.

Fast forward to Christmas Eve dinner. With all the hustle and bustle, I forgot to buy straws for my father in law. It's easier for him to drink through a straw and we were completely out. I simply pulled out the Noel cup with the built in straw and put his drink in that. Problem solved!

My sister in law was sitting next to my father in law and I heard her say, "Look Ed, it's a special Christmas cup. It says Noel." I just smiled to myself. How fitting that Noel saved Christmas dinner.

Thanks Noel. Thanks, Tamara

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.