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 


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.

Friday, March 3, 2017

Returning to Kansas

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

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

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

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

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

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

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

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

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




Wednesday, February 15, 2017

Three years



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

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

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

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

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

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

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

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