Thursday, May 21, 2015

Saying the right thing.

It's difficult for people to know what to say when someone loses somebody they love, and even more so when that somebody is their child. I can tell you from experience, that saying almost anything is better than saying nothing. There were only a couple of statements that were awkward - comparing my child to a dog pops into mind - but even then there was tenderness and real sympathy, so it was fine. I would encourage you to remember that and say something as simple as "I wish I knew what to say" because it all helps

Despite the difficulty of the subject, so many people did and said so many lovely things to us when we lost Maggie.  We appreciated - and needed - all of it. Folks worried about us and the boys and took care of us. My favorites, though, were the comments about Maggie, about who she was and what she meant to the speaker. They spoke of her smile, her wicked sense of humor, her love of music, her abilities, her charm and so much more. Knowing she had an impact on people let us know she was going to live on in some form.

The most unusual and perhaps the most amazing comment of all came from a doctor at UCSF, who may actually never have even met Maggie. Clarissa Kripke MD never treated Maggie, but Maggie and I participated in an elective class she teaches at the medical school. this comes to mind now because we recently received certificates of appreciation for our participation, and my friends Jo and Pat who are/have been involved in that program took the time to frame them.

  The class is called Caring for Adolescents and Adults with Developmental Disabilities.  Several times we had med students spend a few hours in our house to meet Maggie, hear her story and see how we made it all work. Every one of those students was great, but of course those who choose to take this elective are likely the ones who need it least. They already "get it." and want to understand it better.

As the news of Maggie's sudden passing became known many people posted things on either my or Maggie's facebook page. Dr. Kripke said how sorry she was to learn the news because Maggie was "important faculty at UCSF."

Important faculty.

Yeah, I can handle that.

It's probably a good thing Maggie never knew that She would have spent all her time hanging out in the faculty lounge in her graduation gown.


  1. Because of you and Maggie I am learning and continue to learn the right things to say. I know Maggie only through the stories Grace shared with me (she loved her so) and these writings. I so, so wish I could have met her....Kim

  2. an acquaintance of mine suffered a terrible series of tragedies recently. her mother (who was my friend) died tragically of a brain tumor. almost immediately after the daughter had a baby, and there were complications with the delivery, and the baby was born very impaired. then a year later, close to the anniversary of her mother's death, the baby died.

    I knew I had to say something but I wasn't sure what. In the end I wrote a long letter and I included in it stories that have been a comfort to me saying that I hoped they'd be a comfort to her. The third story was about you. here it is.


    I know someone in San Francisco who I met via a livejournal where she wrote about her very disabled daughter, Maggie. Maggie died recently but for her 18 years she was wheelchair bound yet very very vital. Very loved. Her mother wrote about her vividly. The crazy costumes they would make around her wheelchair. Things Maggie liked and did not like. She loved her brothers for instance, like crazy. One day they were in the pharmacy and a woman came up (being in a wheelchair apparently means everyone gets to walk up and be personal) and made pitying noises, “so so sad, and you are so brave” (to the mother) etc. etc. Maggie’s mother said somewhat frostily “She’s just living her life.” And she did. Live her life. All of it and more, without apology, without regret, and with great animation.

    much love,



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