5 years

The wind woke me at three this morning. It was howling and the windows were rattling. It was the kind of storm that makes you brace fro a crashing tree or a breaking window, but nothing like that happened. I was warm and comfortable in my bed, but I still didn't go back to sleep for a very long time. I found myself remembering that terrible Valentine's morning 5 years ago.

It was a little later, like 4:15 or so when I heard Maggies' nurse yelling for help. I ran down there as I had so many nights before that ready to deal with the emergency du jour. We were used to them and very good at handling them.  But not this time.

Maggie wasn't breathing. I suctioned, but her airway was clear. I tried mouth to mouth - or to be accurate, mouth to trach. That had worked one time before. Nothing. I changed the trach. Nothing. The nurse was on the phone to 911 but she was too upset to convey information clearly. Steve took the phone from her and the firemen were on their way.

They seemed to get there immediately, but it's likely that some of those efforts above were after the call. So many things about that night are crystal clear but the timeline is not one of them.  They swarmed into the house and started doing all the things I had done. Nothing. They were doing CPR. Nothing. They kept trying. Nothing. Steve and I stood holding on to one another just outside the french doors leading to Maggie's room. We could see everything because the doors are glass. I can still see her lying there. She wasn't responding.

After about 15-20 minutes, the head fireman looked at us and said we will try for another five minutes. FIVE MINUTES MORE. We were terrified. Then the paramedic said, "I have a heartbeat." It had been 25 minutes since the nurse yelled for help. I knew.

They transported us to the hospital and I sat in the front of the ambulance for the short ride. It seemed to take an hour. I was conscious of the siren but amazed that it was so muffled inside the truck. I remember passing the entrance to Golden Gate Park on Stanyan and still think of that whenever I pass that intersection (which is often). We go to the hospital.

There must have been 20 people in "trauma 1" where they were working on her. All of the ER personnel and all of the paramedics and firefighters and Steve and I. We probably answered questions and likely filled out forms, but I don't remember that. I only remember the amount of people and the frenzy. A hospital chaplain came and stood quietly with Steve and I. And I knew.

Maggie was whisked up to the Peds ICU. We were right next to her and as we headed out I saw the young paramedic look up from where he was doing his paperwork, Our eyes locked for a minute and he just nodded very solemnly. He knew too.

Maggie never regained consciousness and died 36 hours later. It was awful staying there knowing there was no hope, but it gave us time to get her brothers here and to "prepare ourselves" for the worst. We didn't know then that there is no way to be prepared.   

And now it's been five years since that day, the worst day of my life. I don't know why anniversaries are so difficult - I mean I miss her every day, not any more today than any other. But on February 14 and 15th we have to relive it all. 

And the ending never changes.

Miss you, Maggie. Keep watch over us.

Remembering all the children

Last night I attended a ceremony called "A Time of Remembrance" at UCSF Benioff Children's Hospital. This is an annual ceremony the hospital does to honor the children who have passed away. It is a lovely tribute to the children, many just tiny babies, whose lives were far too short. Maggie was one of them.

The families are invited to participate if they want to, and while many do not find comfort in this type of ceremony, many others do. The ceremony included a slideshow featuring photos of all the children being remembered, which is particularly moving. Then everyone who so chooses placed a rose in one of several vases creating the most beautiful bouquet. That was lovely.

There was music and poetry and speeches by doctors, chaplains and a parent who shares their particular story. That parent was me. 

I gave a speech telling Maggie's story and the story of how losing her affected me, I was honored to do it, but it wasn't easy.  My voice shook and cracked because remembering that makes me sad; and knowing I was in a room full of people who intimately understand that feeling made it even sadder.  But there was a cathartic element to it as well.

I am sharing the speech below for those of you who are interested.
______________________________________________________

A Time of Remembrance

UCSF June 21, 1918

I am very honored to be able to speak at this Time of Remembrance. Each of our children remembered here today was a life force and remembering them is easy because each and every one of them was  unforgettable.

Some of you may recognize me from Cookies and Conversation, the meeting of parents that takes place every Thursday afternoon. I am the moderator of that group, but not because I am a trained social worker or counselor of any kind, but because I am a parent who knows what it is like to spend time in the hospital with a child and what it’s like to lose that child.

My daughter Maggie was born in 1994 with something called VATER syndrome. She had parts of her body connected that weren’t supposed to be and parts unconnected that should have been attached. She also had hydrocephalus and cerebral palsy which caused profound disabilities. She never walked or even sat up on her own. She ate through a tube and required constant medical interventions because of her tracheotomy, feeding tube, catheters and other issues. Maggie had over 80 surgeries in her lifetime, and despite all of this, she was just about the most joyous person you would ever meet.

Maggie could not talk, but she could communicate quite well. Eventually she used a speaking device, like Stephen Hawking used, but mostly she communicated with smiles and laughter – and, if she wasn’t getting what she wanted, with frowns and anger. You knew where you stood with her at all times.  She required constant care and it was often very scary, but the joy she gave us was immeasurable.  I am forever grateful to UCSF for providing such excellent care that allowed her to live as long as she did.

Maggie lived her life on the edge of the cliff. Any of her many conditions could have killed her at almost anytime. Despite that and despite the frequent hospitalizations here at UCSF, Maggie thrived. She bossed around her two brothers, had her father wrapped around her little finger, and entertained everyone with her giant personality. She had many friends, went to her prom every year, graduated from high school and lived as normal a life as possible given her circumstances. Maggie was my confidante, she was my best friend.

She fought so hard and so successfully for so long, that we stopped being afraid. We were just along for the ride, her supporting cast. It was Maggie’s World and we were just living in it.

Then early on Valentine’s morning in 2014 without warning and for reasons we will never understand,  something happened and she stopped breathing and her heart stopped.  The paramedics came and eventually got her heart going again,  but Maggie died the next day in the PICU on Parnassus. She was two weeks shy of her 20^th birthday.  Valentines Day means something different in our house than it does elsewhere.

Suddenly the center of our family was gone and it seemed like she took all of the light and joy with her. We were bereft – we will always be bereft.

Unless one has experienced this – as everyone in this room has – one cannot possibly understand what this experience is like. And while I can share my story, I know that my experience is likely very different than yours. Grief is an individual thing, effecting everyone in different ways. 

I can only relay how I felt and how I feel and understand everyone handles this differently. There are overlaps for all of us, but parts of this are so intensely personal, they are unique to each of us.

It is difficult for me to listen to people -- who have nothing but good intentions -- tell me that time heals all wounds and that I will go through the stages of grief and feel better. None of that is true.

First of all the stages of grief can happen in any order and at any time. I might go through five of them in an hour or one might last weeks. There is no resolution. She is still gone. I suppose the pain has dulled over the past four years,  but I don’t “feel better”. There is no time limit on this and there is no order to any of it. 

I think at first it’s all jumbled together, the loss, the grief, the sadness, the memories. As time goes by those things start to separate a bit. I will always feel that loss and the grief remains a part of that, but I treasure the memories of Maggie. There did come a day when remembering Maggie brought a smile instead of a tear, and that was a good day indeed.

That doesn’t mean the tears stopped forever, but remembering was allowed to be happy. That seems more appropriate for my Maggie because smiling was her very favorite thing. 

Now that I am on the other side of the fear, I realize that I could never really prepare myself for losing her. Often times in Maggie’s life there would be a medical crises I thought the end was near.  I always pictured a cliff and there was nothing but darkness beyond. I was so afraid of being plunged into that darkness. But, of course, we cannot truly imagine how we will feel when the time comes. When Maggie died, I  didn’t feel the darkness at all. I felt just the opposite, like I was in a spotlight. I was acutely aware of everything. I remember the faces of the people we passed in the hospital hallway on the way out that night, knowing they didn’t know what we were experiencing and realizing I didn’t know what they were going through. I felt small, and powerless and very exposed.

I had a feeling of being swept down a river. I was not in control, grief was controlling me.  I seemed to be in a canoe with no paddle and just had to let the grief take me where it would. I didn’t know if I would land safely on a sandy shore or go over the waterfall, but I knew I was helpless to control it. This was not a sobbing kind of lack of control -- though there was certainly a lot of that -- this was a sort of peaceful acceptance that I just had to let this happen and not worry about what I was supposed to feel  - or say -  or think - or how I was supposed to act.

        

       As time went by I felt less and less out of control. I was still on that river, but now I had a paddle. There were difficult parts to navigate, but on the calm parts, I was going to be ok.  I had to adjust to a life without Maggie.

I learned -- and I bet all of you have learned – that eventually people don’t want to hear about the child you lost. They tell you it must be a relief, they tell you it as for the best or that you will have another baby, they tell you silently but clearly that you have grieved long enough.

They are wrong, everyone of them. We all have to grieve and remember and do whatever we need to do to go on, regardless of what others say or think or imply.

The analogy that works best for me was articulated by Rose Kennedy who outlived at least 4 of her children. That compares ongoing grief to a deep wound.  It starts out raw and angry, but eventually starts to heal.

The wound closes up, but the scar remains a part of you. You carry that scar around always. Sometimes it’s visible and sometimes its covered. But it is always there.

And now that I have been carrying it around for over 4 years,  it is no longer a burden, but a privilege. This is hard to convey, but the depth of experience that comes from losing a child is profound and, while I wouldn’t wish it on anyone, it is my honor to carry Maggie around with me.

I was lucky. I got to have my daughter for 19 years. Many of you likely did not get that long of a time with your child. But it doesn’t matter if it was 19 months, 19 days, 19 minutes or less than that. These amazing children were ours for however long they were here and they made their mark on their parents and the world. The loss of each of them is deeply felt by us as parents and by their siblings and other family members and friends. They were innocent and all of them lived far too short of a time, but they live on in our memories and in our hearts. We will never forget them.    

When Maggie was born my life changed. When Maggie died, my life changed again – but it did not change back. She changed me completely. I learned everything from her and I miss her every moment of every day. 

I remember and honor her and all of our children today and everyday. 

Grandma said there'd be days like this

 When I was a kid my grandmother had certain “days.”  Two of those  "days"  were the anniversary of the day my grandfather died and his birthday. I didn’t remember my grandfather; he died when I was two, so those days didn't mean anything to me. Still, it was obvious that those days effected my grandmother deeply. She was obviously down needed everyone to acknowledge that. She would say she felt “a little blue” in her soft Dutch accent. 

 My dad, her only child, would remind all 7 of us to give Grandma a call because it was one of her "days." So, my siblings and I would pick up the phone and call her or, if possible, drop by and see her and say all the right things.  I always did it, mostly because my dad asked me to. It was an obligation, not a heartfelt gesture. At the time I just didn't  understand it.

 Now, 31 years after my grandmother died (at age 97), I feel like I owe her an apology. Because now I understand. Now, I have “days” too. 

 March 3^rd is a "day" for me. It is the day my life changed because it is the day Maggie was born.

Today would be Maggie’s 24^th birthday.

I presume everyone has “days” and we all handle them differently. My grandmother was “blue” but I don’t feel that way today. I remember my happy smiling daughter and miss her a little more than usual, but that’s ok.  Unlike my grandmother, I do not need anyone else to acknowledge this day, but it is important that I do.

 March 3^rd is a day that has evoked many different emotions over the past 24 years. The year Maggie was born it was a day of shock and fear, which is the exact opposite of how the day you have a baby should feel.  For many years when Maggie was little, it was a difficult day because instead of celebrating milestones, this day was a reminder of milestones she wasn’t hitting. She wasn’t walking, she wasn’t talking etc etc.  After a few years I stopped worrying about what she wasn’t doing and noticed what and who she actually was. Once I got to that point, March 3 was a day of celebration. Maggie loved her birthday. It was the day everyone focused on her. (Oh wait, that was every day.) For the past 4 years it is a day of remembering, sometimes happy, sometimes sad, always a bit melancholy.

So March 3 is a “day” for me. It is a day of strong emotions and powerful memories, good and bad. I guess that makes it kind of an incredible day, which is fitting because she was an incredible person.

Happy Birthday Maggie. We miss you today and always.

Good Grief

The dog decided 5:30AM was absolutely time for breakfast. I plodded downstairs to feed her and let her out. She ate and went right back upstairs to bed. Me? Not so much. It was early on Valentine’s Day and there was no sleep left for me.

Valentine’s Day is not a happy day in this house. It used to be, but not anymore.

It has been four years since that other Valentine’s Day morning. Maggie loved every holiday, regardless of the theme. Any cause for celebration was a good thing to that girl. The Valentine’s for her teachers and classmates were all ready. Her red outfit was all laid out. Maggie would be her resplendent self. But it was not to be.

It was very early in the morning that the nurse started yelling that something was wrong. I was down there in a flash but Maggie wasn’t breathing and none of my remedies were working. Steve called 911 and the firemen arrived quickly and worked feverishly. It took a while – too long really – to get her heart started again. We knew before we left for the hospital that this was very very bad. Maggie never regained consciousness and died the next day. So while the anniversary is technically February 15^th, it will always be a sad Valentine’s Day tale for us.

From that day to this I have been awash in grief. It is always there. Always.

After four years I have learned a little about grief, very little really because my experience is just that-  my experience. It is a deeply personal thing and everyone has a different way of dealing with it. Still, here is what I’ve learned:

  I learned that the stages of grief are ridiculous and do not apply to a loss as great as this. Perhaps they are more applicable to a romantic breakup where one often emerges stronger after getting over the loss. The stages of grief suggest some sort of resolution that simply doesn’t exist for me or I suspect for many others.  Do I experience those stages? Yes. Sometimes several a day and in no particular order.  Do I feel any sort of closure? Never. Yes, I accept the fact that she is gone; I really don’t have any choice in that but the loss is as real and fresh today as it was 4 years ago.  It’s not the raw sadness that it was at first, but it is no less present than it ever was. 

I also learned that grief and sadness are two different things. Certainly there are times I am very sad, but I experience the whole range of emotions and the grief is still present. It is okay to be happy. It is ok to be excited. It is ok to be angry. The grief is there no matter what because it is a part of me. I am 5’6’, I have brown eyes and I am grieving.

I learned pretty quickly that the rest of the world thinks you have moved on – or that you should. People do not want to be reminded of the loss, perhaps because they can’t imagine the depth. Every minute of every day there is a piece of you missing, but when people inquire how you are, you dutifully answer “Fine.”  You can’t explain it, they don’t want to hear it, so you just push on. This only feeds the misperception that I have "moved on", but it’s just easier. And easier is ok.

I learned too that because it is always present and because people don’t want to be reminded of it, it becomes almost sacred. It is a part of me I don’t share with anyone except my immediate family. It’s like having a secret from everyone. While the secret may not be something folks want to share, there is a certain amount of privilege to be able to experience this so deeply and so privately.

Maggie changed my life when she was born, and she changed my life when she died. Every day she was alive was a joyful (but sometimes scary, often exhausting and exasperating) learning experience and I miss her every single day since she’s has been gone. Everything reminds me of her and brings either a smile or a tear, depending on the day and my emotions and any number of other factors. Missing her is part of the grief, but so is remembering her.   

My grief is one of my strongest connections to Maggie. And for that I am grateful.

Maggie McDonald

March 1994 - February 2014

Warrior Woman, checking in.

Lisa, Kristen, Senator Feinstein, Nina and Me. Warrior moms all. 

I had the distinct honor and privilege to be one of three moms to meet with Senator Dianne Feinstein today. Senator Feinstein was visiting UCSF Benioff Children's Hospital and wanted to meet parents who could help her better understand and articulate the full impact the proposed medicaid cuts would have on those who benefit from the program, but are not one of those perceived to be in the typical category of medi-cal recipients. (Note, medicaid is called medi-cal here in the great State of California). I cannot tell you how thankful I am to have that opportunity. I am so delighted that the Senator wanted to hear our stories and that UCSF asked me to be one of those people.

I told her how much Maggie and our entire family benefited from the medi-cal program. Maggie qualified under a waiver program for those with complex medical problems. While we have always had private insurance, it did not begin to address her medical needs. Once she started receiving medi-cal we we able to get the home nursing we needed, and her equipment and co pays were taken care of.  It saved us financially, and improved and extended her life. I would be laying awake nights worrying now about what would become of Maggie if these cuts went through, and I still worry as a citizen, but I don't have to worry about Maggie anymore.

Senator Feinstein was interested. She wanted to know how Maggie's quality of life improved. I didn't have time to explain it all, but I told her about school and going to the mall and hanging out with her friends and being part of the community and the family - none of which would have been possible. I told her everyone has to live the life they were given, and Maggie got the chance to do that because she had access to excellent medical care at UCSF.

When I finished, the Senator listened to the other moms and asked pertinent question about their children. She wanted to know how they were doing, what the prognosis was and how the moms managed the care. She called us all warrior women, a title I will wear proudly.

When we finished the small group meeting, we proceeded to a press conference. (Please stand back, one at a time...). I made a speech telling Maggie's story again and tried to hold it together. It was difficult because aside from the press, the room was filled with UCSF staff, many of whom had cared for Maggie over the years. There is no way to convey the gratitude I have for them. I was shaky, but didn't lose it, Apparently, I  made a lot of people cry. (Booyah!) Kristen shared the story her lovely complicated, bold and entertaining daughter too. She has had a rough begining and continues to fight, but has an excellent prognosis.

The chancellor, the executive director and the medical director of the hospital all spoke passionately about the need to protect the medical care system for children and for everyone. And then the Senator spoke.  She is amazing.

Senator Feinstein is working hard to protect our children from the horrible cuts the proposed health care bill will make. Millions of children and adults will be effected and the health care system so carefully built will go into a tailspin. It has to be stopped.

You can help. Senator Feinstein urged the audience to call every senator you can - particularly those on the Republican side of the aisle and tell them how devastating this will be for the Maggie's of the world and for all the children. Think of your elderly parents, think of just about any child you love, know or have ever seen. They will be effected by this as will the generations of children to come. Maggie paved the way for the next generation to go farther and be healthier. Please don't let that have been for nothing.

Call. And tell your friends and family to call. This can be stopped. We deserve better. Please let the senators on both sides of the aisle work together for something that will work for everyone. I don't care what your politics are. I don't care who you voted for. This is beyond all that. It's the future of our children and grandchildren.

Spread the word.

Remembering the unforgettable

Today is the "Day of Remembrance" at UCSF Benioff Children's hospital. This is to remember the children of UCSF/BCH who passed away. This is my second year going. It is a sad, sweet program to honor those children, from tiny preemies, to cancer victims and everyone else who lost their fight.

I am bringing this picture of Maggie and her friend Tyre. This is from their "prom" date. Prom is in quotes because Tyre was in the hospital and did not get to go. Maggie and I went to the hospital beforehand so they could have some time together. His mom had him all dressed up to match Maggie's dress and he had flowers at the ready. Tyre was a ladies man. Just take a look at the way he is looking at Maggie.

Tyre passed away about a year after Maggie did, and then Tyre's mom passed away shortly after that. I feel like it is my duty - and honor - to remember Tyre today.

And Maggie is at the forefront of my mind and my heart, today and always.

I remember him. I remember her. It's not hard to do. They were both unforgettable.

I salute all the children and all their families who remember them everyday.

Happiness

It is early, but I am wide awake. I've had two cups of coffee, thrown the frisbee for the dog and read several chapters of a book. Steve is still.asleep. Now I am listening to the birds song and the wind blow through the trees. And there are a lot of trees.

I am in Graeagle, California, a place of unbelievable beauty.  We arrived yesterday at our rented cabin filled with kitschy decor  - lots of bears and moose. It is exactly what we need.

Thus is the calm before the storm. But it is a happy storm approaching.

My son Eddie is getting married on Saturday. His bride, Grace, has really been part of the family for years, the wedding just makes it official. But a wedding is first and foremost a celebration and that is exactly what this wedding will be.

Friends and family start arriving today and keep coming over the next 40 hours or so. I am smiling just thinking about it.

I think how much fun Maggie would have at this wedding and I miss her, but it doesn't make me sad.  I have learned that missing her is different from sadness and grief.  I smile thinking of her joy and just wish she was here. I have also learned to recognize and respect emotions as they come. And this is a good one.

I believe this is called Happiness. I am happy that Grace will be my daughter in law. I am happy that my son is happy. I am looking forward to seeing Tim as Best Man. I am looking forward to the wedding itself.

Steve and I are so proud and happy and somewhat in shock that this moment has arrived. In our minds Eddie is still about 4 years old bossing everyone around.

I wish everyone could be here to share in this happiness, even if it is not on the same level as the mother of the groom. I do wish Maggie was here. I always do. She would probably be happier than me. 

And that is very happy indeed.

This beautiful engagement photo was taken by Grace's mom Kim. It is timeless. 

Stupid questions for $100, Alex

The other day someone asked me a question. It is likely not a question posed to most mothers who lose a child, but is reserved especially for those who lose a disabled child. At the same time I'll bet it is a question that many people want to ask but stop themselves. And they should be proud of themselves for stopping, and somewhat embarrassed by thinking there is more than one answer.

The question: Do you feel like a large weight was lifted off of you when Maggie died.

The answer: (Silence and staring for a long minute and then,,,) NO. I feel like my daughter died. I feel like any mother does who loses a child. There is no relief, there is only an aching sadness and overwhelming sense of loss.

The questioner was honestly curious and sort of surprised at my response. I, on the other hand, was dumbfounded at both the question and his surprise. I am not sure if this will make sense to anyone, but it was so galling that it wasn't even offensive. Actually I sort of felt sorry for him and his inability to see and appreciate life in forms other than his own.

Sort of.  But not enough to give him a break.  

I looked him right in the eye and said, "Yes, being her mother was a lot of work, but that was her life and that was my life and we all found joy in that life that was taken away from me. Now I don't have it anymore and I miss it every single day."

My tone let him know the discussion was over.

I doubt he understood my answer. Because someone who asks that question is so completely out of touch with the fullness of Maggie's life - and my life with Maggie - that he could not possibly comprehend that it was anything other than a chore. He never saw the reward. That is his problem, not mine.

I got my reward 1000 times a day. It was like a slot machine that just keeps spitting out winnings. And then the slot machine was gone. The payoffs stopped.  And that makes me sad. And it would make any mother sad.

It's a stupid question.


Far and away the best prize that life offers
is the chance to work hard at work worth doing.
-Theodore Roosevelt 

Celebrating and aware

My niece and goddaughter Clare is getting married today. Folks are flying in from all over. Everything is just about set. We are looking forward to celebrating this evening with her and her soon-to-be husband Joe.

Clare has just one sibling, Patrick. They are close, just 15 months apart and Clare has been a great big sister to Patrick. But Patrick won't be coming to the wedding. Patrick has autism and doing anything out of his routine and unfamiliar is very upsetting to him, as are unfamiliar surroundings and loud noise. All those elements together would be too much for him, so he is staying home. They have had private celebrations in their immediate family and there will be many more. Patrick loves Clare and if he could be there, he would. She knows that. And that is enough.

Patrick was a few years older than Maggie and my sister Mary was (and is) a huge support to me as I raised Maggie. Though our kids had completely different disabilities, there are more similarities than you would think. Parenting a child with a significant disability is a club unto itself and my sister and I were both members. We have the same weird sense of humor and could laugh at the absurdity of our lives together. That saved us both over the years.

It is hard for Clare to do this without her brother but she knows it's best for him and that is all that matters to her - doing what is best for Patrick. When he was young and they were all figuring out how to handle his autism, Clare would defend his behaviors to other. She would tell kids, "My brother is artistic" as though that would explain everything. (That was particularly amusing since her dad, my brother in law Channing, is an artist.)

Even though Patrick cannot be at the wedding in person, he is part of the ceremony.  Clare is having her cousin Will stand in for Patrick as a groomsman. Will and Patrick are about the same age and he and Clare have always been close, so it's perfect. Also, the groom and his men are all wearing the little puzzle piece for autism awareness in lieu of a boutonniere. I think that is just a perfect tribute to Patrick.

April is autism awareness month. We will all be aware as we celebrate today, just as we have been for 30 years.

Maggie and Patrick one Thanksgiving many years ago.

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.

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.

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.

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.                              

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.

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:

grief

ɡrēf/

noun

1. deep sorrow, especially that caused by someone's death.

   "she was overcome with grief"

   synonyms:

   sorrow, misery, sadness, anguish, pain, distress, heartache, heartbreak, agony, torment,affliction, suffering, woe, desolation, dejection, despair; More

   • informal

     trouble or annoyance.

     "they won't give you any grief in the next few days"

     synonyms:

     trouble, annoyance, bother, irritation, vexation, harassment;

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. 

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.

Thomas of the Richmond District

This is an addendum to a post I did last week about my neighbor Thomas who recently passed away. Here's the original post Maggie World: Thomas

Thomas was a lovely, sweet, homeless, mentally ill man who spread good cheer whenever her went. When news of his passing spread on the neighborhood blog there was an outpouring of stories of how Thomas had touched various people in the neighborhood. It was the internet at its most pure: no snark anywhere.

My friend Mark also lives in this neighborhood and told me there was a service planned at Star of the Sea church this evening. I made a point to go. I wondered as I approached the church if anyone would be there. I would not have been surprised to find 20 people there and that would have been lovely.

But I was wrong. I don't know why I underestimated my neighbors or the effect that Thomas had on them.  There were HUNDREDS of people there. The large church was full and there were people standing.

There are this many more behind me too

Folks brought food donations for the local food bank and donated to a collection to get Thomas a burial and headstone. He was a good man and a member of our community and we were there to take care of him. It was so heartwarming, especially on the eve of this very contentious election.

The priest talked about homelessness being the lack of a shelter, which was certainly true for Thomas, but he was not lacking a home. He was at home in our neighborhood under the trees. He was one of us.

After the mass I walked over to the reception with Mark and his wife Pat. Pat said that though she was impressed and moved by the turnout, she felt a little let down because she thought they had a special relationship with Thomas. I felt the exact same way.

The truth is, we did have a special relationship. Each of  us. All of us.

I feel very proud of my neighborhood. But in reality it was Thomas who did it. He was just the embodiment of goodness and shared it with us, his "family."  We were all richer for having known him.

Godspeed to a good man.  

Dia de los Muertos

Today is Dia de los muertos or Day of the Dead. It is a part of the Mexican culture to honor those who have died. It is a national holiday in Mexico and it has become more popular here as well. You see these altars set up everywhere.

I just received pictures from Joe, one or Maggie's former teachers at Mission High. There is an altar there for the school community and he put up a picture of Maggie and one of Tyre and his mom Nadine, who have all passed away.

It made me so happy to know Maggie is gracing those halls once again.

Halloween redux

Rerunning last year's post, because
"Halloween, my brother"

Saturday, October 31, 2015

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"