Friday, June 22, 2018

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 20th 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. 

Saturday, March 3, 2018

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 3rd 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 24th 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 3rd 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.


Wednesday, February 14, 2018

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 15th, 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

Friday, July 7, 2017

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.





Thursday, June 22, 2017

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.




Thursday, June 8, 2017

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. 

Monday, April 24, 2017

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