Friday, March 3, 2017

Returning to Kansas

March 3 will always be an important day in my life. It is Maggie's birthday.  It is a day of bittersweet reminders.

You may think the "bitter" in this bittersweet story is the fact that Maggie has now been gone for three years and of course you are correct, but that is only a part of the story. The day she was born was the hardest day of my life. (Well second hardest now.) We were so excited to have our baby girl and that was dashed by the terrible news of the severe medical and physical issues that were threatening her life and would shape her life and ours forever.

Obviously, we came to understand those physical isues and embrace them as part of the person Maggie was, but initially it was incredibly difficult. And each year on her birthday, the horror of that day shadowed the celebration of her birthday for all of us, except Maggie.  She loved her birthday, as most kids do. In Maggie's case though it was a day that made sense. She was the focus of the day as she figured she should be every day.

The sweet part of this is easy. It is the day Maggie came into and completely changed my life. Despite the initial fears and concern, we not only adapted to Maggie's world, but thrived in it. And make no mistake, it was Maggie's world, we were just her supporting cast.

Maggie was a force in this world. She was small and disabled and many people overlooked her power, but that was at their peril. She was large and in charge and she let everyone know it as soon as she could.

If this were the Wizard of Oz, I would be Dorothy and Maggie would be the tornado. (Steve is probably the scarecrow.) The tornado swooped in and changed Dorothy's life and perspective forever. We were not in Kansas anymore when we were in Maggie's World. Maggie's World was Oz. We met so many wonderful people on our Yellow Brick Road and fought off witches and flying monkeys at every turn.

The likeness falls apart because Dorothy always wanted to leave Oz and get back to Kansas. I was happy in Oz and would have stayed there forever. But now I am back in Kansas. The tornado is gone and we are left to pick up the pieces and forge on like the scappy farmers we are. We are doing that, but I think Steve and I are are more akin Auntie Em and Uncle Henry these days.

It's boring and its flat in Kansas and on days like today I wistfully look back and remember the energy of the tornado, the good things it brought, and how it changed us all for the better.

Happy Birthday Maggie, we miss you and your incredible energy. It is still a part of all of us.

Wednesday, February 15, 2017

Three years

Today is the 3rd anniversary of Maggie's passing. It seems like yesterday. And it seems like forever.

I dreamt of her last night. I don't do that very often, and I do not know why that is. She is on my mind all the time. I miss her every minute of every day. That is not to say that I am sad every minute, but there is a sort of film over everything, a tinge of sadness, I suppose. Still, most of the time I think of her with joy and happiness. And then I miss her all over again.

Maggie was almost 20 when she died. Most 20 year olds are venturing out on their own, perhaps in college far away or working toward independence in other ways. Maggie was not working toward independence. That was never in the cards for her. I am not saying she wasn't brilliant and funny and entertaining, because she was. But she was dependent on others for everything. She was dependent on us, her family, for everything. And we were happy to provide it, because she gave us so much in return.  Her love and joy were boundless and being around her was invigorating and extremely entertaining.

 Since she's been gone, I have floundered. My career was sidetracked when Maggie was born but it doesn't just resume because she is gone.  After 20 years, one doesn't just pick up where one left off.  I was not the same person that stepped off that track 20 years earlier, no one is after that amount of time. Further, there isn't really a comparison to my situation and others. It wasn't just a "mommy track" and it is not just the passage of time that changed me. My world changed. Maggie changed me. Maggie gave me purpose. I knew who I was and what I had to do when I was Maggie's mom. I don't have that anymore.

I miss her and I miss my clear sense of purpose as well.

I haven't lost myself, only the clarity of purpose. I do all the same things I did when Maggie was here, but Maggie was the center of my life and of this family. I am still a wife and my husband is a wonderful man who misses Maggie as much as I do. I am still a mother. My boys are grown now and establishing themselves in the world just as they are supposed to do. They don't and shouldn't need me. They somehow try to carry on with Maggie in their hearts. I am still a lawyer and work from home on a variety of interesting topics. I still volunteer. I still walk the dog. I still live my life. But I do it without that center and it often feels hollow.

I will find clarity of purpose again. I know I will. Everything I do now I do to honor Maggie and I am finding that helps me feel centered. Maggie doesn't need me anymore but the issues she faced remain front and center in my life. I fret about the Maggie's of this world in the shifting winds of the new America. As much as I miss her, I find myself relieved that I don't have to worry about her in this rapidly changing climate.

So, I start year 4 with a resolve to find my center again. Maggie made it easy. Without Maggie it will be harder, but I will use her to assist me. That can only help.

Thursday, January 5, 2017

Happy 2017

The Christmas decor is all put away. Well, mostly. It's all packed up and as soon as the basement dries out from the backed up sewer incident, we will put it away.

Yeah. the year is off to a great start.

I have become something of a Grinch. The Holidays have really become something of a chore. They used to be so fun but not so much anymore. I miss Maggie. There is just a hole in the celebrations and in my heart. There are things about the Holidays that I really enjoy but I have to confess, I really love the day the decorations are all put away for another year and things return to "normal."

Grinchiness notwithstanding, the best part of the holidays is seeing family and friends. I wish we could extend the efforts we make at Christmastime to the rest of the year, and I am going to make that effort this year. I cannot see everyone I want to in the time between Thanksgiving and Christmas, so watch out, I may be coming to visit one random day in April.

Miss Emily and Maggie maybe 2005
We did have a special visitor this year. Emily came from Poland. Emily was Maggie's teacher way
back when. That was Emily's first job as a teacher. Can you imagine? Starting a career with my wise cracking severely disabled and medically fragile child in your class along with other equally involved kids. Emily did great and became a part of the family. She taught Maggie for two years until Maggie moved onto middle school and a couple of years after that, Emily took a job in an international school in Warsaw.

The last time Emily was here was Christmas 2013, just six weeks before Maggie left us.
Christmas 2013
When she heard about Maggie she wanted to fly here for the service, but I told her not to. The expense would be enormous and she did not need to do that to show us how much she loved Maggie and all of us. We already knew. When she arrived last Wednesday, it was the first time I have seen her since Maggie passed away. As she ran up to me at the airport, I though I was going to lose it.  We hugged for a long time.  There was so much in that hug. I felt like she was literally holding me together.

The visit was short, just two days, but I so appreciate her taking time from her actual family in San Diego to come up and see us. She brought her friend Hannah with her and we did a whirlwind ride around the City seeing the sites.
 Mostly, though we just talked and walked the dog and ate. At the very last minute I asked two other teachers from those days if they could come by and happily both Sheila and David could come. Sheila, aka "Evil Sheila" (her self given name) taught Maggie for four years before Emily arrived, and David was the speech therapist who was the first to have Maggie tell jokes to figure out how to communicate. Maggie absolutely found her power in joke telling. We sat around my dining room table drinking wine and eating pizza and reminiscing about those years.  I felt like Maggie was right there grinning at the end of the table.  It was excellent and it completed the Holidays.
Emily, Sheila, David and David's daughter Emily

 Emily left and the year ended quietly and we begin a new year.  Despite the sewer and other annoyances around the start of this year, 2017 hold a lot of promise. My son Eddie is getting married this year! Two nieces are also getting married! Another niece is having a baby! My mother is turning 90! There is happiness afoot, and I intend to be a part of it.

I read that many people adopt a word to frame the year in lieu of resolutions. I think that is an excellent idea, though I will do in in addition to the dozens of resolutions I have (most of which will be broken).

My word for this year is LISTEN. I learned in 2016 that I spend far too much time talking to people just like me and then I am surprised something from outside my orbit comes into the mainstream. It is time to get out of the echo chamber and actually LISTEN to what people have to say and try to see the world from other points of view.  That was automatic when I lived in Maggie's world, but with each passing day I get farther from that.

So talk to me, I will LISTEN.

Happy New Year.

Friday, December 23, 2016

Merry Christmas

Merry Christmas to all of you who look in on this blog. I appreciate your support and dedication.

It's hard to believe this will be our third Christmas without Maggie. It is certainly a different time of year without her. She loved the lights, the wrapping paper, having her brothers here, seeing her cousins, the music and everything else. The gifts were just an add on.

I do try to stay positive and I feel very blessed that I was Maggie's mom and that I enjoyed it so much. I meet many parents of children with disabilities. While many feel like I do, that their children changed their life in a positive way, other do not. From my vantage point it seems they don't know how good they have it. I am grateful that I knew what I had when I had it, even if it makes me miss her and our life that much more.

I wish all of you the peace and happiness of Christmas or any Holiday you may celebrate.

These photos of Maggie came up today on my facebook memory page. Both are from her last Christmas with us in 2013.  She loved riding in the elevators at the Hyatt Regency* and wearing her Santa hat

*Steve went into the Hyatt Regency the other day and the signature decorations - the lights hanging from the very high ceiling are gone. Makes sense.  Without their biggest fan, what's thepoint.                              

Tuesday, November 22, 2016

Grandpa Ed

It's Thanksgiving week. Everything is so busy. The table has been extended, the supplies laid in, last minute grocery runs planned. That should be everything. But not this year. That doesn't even begin to scratch the surface of what is going on around here.

Thanksgiving will be bittersweet for us this year.  Steve's dad, Ed McDonald, passed away quietly late Sunday night. He has been in failing health for quite a while now. He was living here - in Maggie's room - for the past four months since he went into hospice. He needed round the clock care which he lovingly received from two caregivers. He was comfortable and pain free while he was here and I am glad for that.

When he entered hospice he was assigned a nurse. They told me the nurse was also a Catholic nun and I thought that was perfect because Ed has always been a devout Catholic. The woman was great, no nonsense, down to earth. I could not believe it when she told me her name was Sister MAGGIE. In all my years in Catholic school for me and my boys, I never met a nun named Maggie. There were Sister Margarets, but no one ever used the nickname. That was such a strange coincidence, but one I decided was a good sign. So there was Ed in Maggie's room, which is perfectly set up to care for someone, being supervised by Sister Maggie.  Everything felt right.

We knew he was declining but still the end was something of a surprise. I suppose that is always true. No matter how expected, there is a moment when life ends, and it is so unbelievable when that moment actually happens. Steve's siblings were both here earlier on Sunday, which was great. In fact, that may be what he was waiting for - to see all three of them together. I know he gave them a weak smile when he realized they were all there.

Let's face it, I pretty much hit the jackpot in the father in law department. He and I had a great relationship always, but especially in the past three years since he came to live in San Francisco. I became his main lifeline when he was in assisted living and then in skilled nursing and finally here at our house. We spent a lot of time together and I loved every minute of it. He was so accepting of his circumstances. He had Parkinson's and could no longer live on his own. He didn't want to go into assisted living, he didn't want to leave his home or his town or his church, but he accepted that was how it had to be and he never complained. He had so much grace.

 I first met Ed 33 years ago when I started dating Steve. I can honestly say in all that time I never once heard him raise his voice or have a cross word for anyone. This is not to say that Ed was quiet and reserved, because that's not true either. In his day, he was warm and generous host, he ran local campaigns, he ran everything at their church, he loved to hunt and fish and was a scratch golfer. And he loved his family more than anything. Ed retired from the phone company when he was 51 and enjoyed his life even more after that. That was back when I first knew him and for a couple of years after his retirement his watch would still alarm at 4:30PM which was the time his workday at the phone company ended. It was a daily reminder of how happy he was.  He would smile and turn it off saying "Poor Bastards are still working." It was hilarious.

The two Eds
I remember when Eddie was born - the first grandchild on that side. We had a different name picked out and had shared that with others. Exercising my prerogative as a pregnant woman, I changed my mind about a week before Eddie arrived. Steve and I decided on Eddie but never had the chance to tell anyone because he unexpectedly arrived early. I didn't get to see his face, but my mother in law later told me that Ed drew in a breath and his mouth went into a perfect circle when he heard his first grandson would have his na me. It was a good choice.

So in addition to the Thanksgiving prep, we are planning a funeral for next Monday. I am glad he is at peace and I am glad he and his bride, Branca, are back together again.

 He was a wonderful man, a wonderful father and father in law and a fantastic grandfather. In this week of Thanksgiving, I am thankful I was part of his family.  I will really miss him.

Saturday, November 12, 2016

I give you grief.

Like half of America (plus 200,000) I am not happy that Donald Trump was elected President.  As election night progressed and his victory looked inevitable, I had to go lie down in the dark. For the 24 hours after I refused to look at any media, missed speeches and insights because I just couldn't handle it. My husband was a little worried about me because I would only watch the Hallmark Channel.

 Then on Thursday, I got up and faced the new America. I am still not happy, but I am an American and this is my country. I will not change my attitude toward the civil rights of my fellow Americans, those who immigrate to this country, or the environment because of the person in power. In fact that will only steel my resolve.  It is a call to action. 

I am now seeing articles describing the "grief" of many Americans about this election. I recognize I had a strong emotional reaction to this election, but I bristle at the use of the word "grief" to describe it. Grief is different, grief permeates and eats away at you. Grief is lonely. Grief is powerless. 

Though I have been living with grief for the past 33 months, and have tried to define it through my writing and thinking and any other way I could,  I realized I never really looked up the word. Here is the dictionary definition:

  1. deep sorrow, especially that caused by someone's death.
    "she was overcome with grief"

It seems, then, that my bristling is unfair. Grief is not limited to the deep sorrow caused by someone's death, it is ANY deep sorrow "especially" that caused by someones death.

So to those of you "grieving," you have my sympathy. I sincerely hope this is the worst sorrow you ever experience.

Just remember, you are not powerless. You have the power to change this. It might take four years, but you have power. 

Those who are grieving after a death cannot do anything to change the situation. If there was anything we could DO we would, but it is impossible. We are helpless to change the outcome. We can work through our grief and hopefully come out the other side, but we cannot bring back our loved ones. 

Unlike the loss that comes from a death, however, you are not helpless. You can DO something about this. If you don't want a Trump president DO something. Work for change and maybe, just maybe, LISTEN and try to understand those who voted for Trump, because they were clearly ignored for far too long. They are not all racists and misogynists, and name calling will not effect the change you want.

I've lived with grief for a long time now and if you want that word to describe this, it's all yours. I literally give you "grief."

Perhaps what we need a new word to describe the particular deep sorrow that follows a death, because I guarantee you, it is very different than this. 

Wednesday, November 9, 2016

Election 2016

Donald Trump, who mocked the disabled and spewed a lot of horrible things about a lot of different groups of people, has been elected President of the United States of America.

I am deeply concerned about what the unexpected outcome of this election means for all Americans, and particularly the most vulnerable members of our society.

I hope with all of my heart that the methods he used to get elected are not the methods he uses to lead this Nation.

I miss Maggie every single day and wish she was still here.

Today I am relieved that I don't have to worry about her.

Let's make America kind again.