Encounters with strangers are frequently very strange when Maggie is with me. People will say the oddest things. They always have the best of intentions but we have been on the receiving end of some bizarre encounters many of which I have shared here. Once is a while it's just nice and sweet, and that deserves to be shared too.
Maggie and I were leaving UCSF Benioff Children's Hospital the other day after visiting her friend. The Children's hospital is located on the 6th, 7th and 15th floors of the two hospital complex that makes up part of the medical center. It is a very confusing place to navigate. Only certain elevators go to certain floors and unless you know your way around, you poke your head out of an elevator wondering if you are in the right place. A new free standing Children's Hospital is under construction and will open in 2015, but until then newcomers to the Children's Hospital walk around lost and bewildered.
Getting an elevator with Maggie's giant chair is also quite a trick. We take up the place of about four people. We were on the 6th floor and the first elevator looked pretty full. I said, "Thank, we'll wait for the next one." An older man said Nonsense and moved folks around so there was room for us. I thanked him. He and his wife (I presume) admired Maggie's talker and she gave them one of her winning smiles. We arrived at the first floor and Maggie and I got off and I saw them peer out in that familiar "Where are we?" look. The man said "How do we get back to Parnassus? (The name of the street the hospital is on). I said, "Follow us."
As we walked down the long hall toward the front of the medical center, they were behind us and I could hear them talking. The man said, "That baby is beautiful." I smiled to myself, glad that they were in the hospital for a happy reason instead of a sad one. I brought them outside through a different door they had entered. Now they were totally confused. The woman said, wait, we need to get our car on the third floor. She started to go back inside but I pointed across the street and said, the parking lot is over there and you go down to the third floor in the elevator over there. She looked completely turned around but her husband had his bearings.
Maggie started to laugh uproariously and pointed at the parking lot mimicking me. The woman started to laugh then and said "She gets it and I don't." Maggie laughed harder and reached her hand out for the woman. The lady held Maggie hand for a minute and melted. She asked Maggie how old she was and I responded for Maggie. The woman was smitten. Her husband looked at me and asked if Maggie was my daughter, I said "yes she is."
He looked straight at me and said, "She is terrific, You are really blessed."
It was so simple and so heartfelt that it was very touching. i just smiled and said, "yes, I am, Thank you very much."
I left to go to one set of parking lot elevators and sent them down to the other. As I waited for the next elevator I thought about that exchange. It was so sweet and the context made it more so. He was responding to Maggie specifically, not to the general situation of a girl in a wheelchair. If that man had walked up and said that out of the blue it probably would have creeped me out, but I knew they had interacted with Maggie and that made it OK.
More than OK, it made it great.
First I wanted to say that I am glad you had that nice interaction at the hospital... people really can make or break the day sometimes and it is so nice to have genuine interactions with your child and the public. When out in public with my daughter it is a mix of being stared at or ignored so the good stuff really stands out. I have been following your blog for the last few years and have really been able to relate to your experience. The real reason for my comment here is that I was hoping you might be willing to email me privately concerning some trach questions. My daughter is almost 7, she has hypotonic CP and a sever seizure disorder because of this she is GJ fed and has chronic pneumonia... I am just looking for some parental insight... feeling lost and not sure what we should do. I just would love an opportunity to hear more about your experience and to bounce around some thoughts. I hope this is not too weird.
ReplyDeleteThank you, Tina Stracener (mom to June)
edandtina@ipns.com
I really love this story and the way you told it.
ReplyDelete