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


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 

Saturday, April 8, 2017

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.