How?

How do you begin to talk about someone who profoundly changed your life the very moment you met? Someone who changed the way you viewed the world...forever? How do you pay proper tribute to someone who made you a better person, even though you saw them so infrequently that years would pass before you saw each other again?

How?

I will apologize in advance to my family--my memories are hazy, and I may get things wrong; for that, I am sorry. I don't want to come off as glib or clichéd, nor do I want to make this about me. Because this is all about Marcela, my step-sister.

Marcela was born in 1950. I met her when she was about 18 years old; on Easter 1969. My guess is my mom and Marcela's dad were going to get married that year, so it was time to introduce Marcela to my family (I had already met my soon-to-be stepbrothers). My mom tried to explain to me that Marcela was different, but my nine-year-old mind could not understand fully the explanation; I had never met anyone like Marcela. 

The very moment Marcela wrapped me in the biggest hug of my life so far, my world view and my sense of morality changed. Before this, I had never known someone with an intellectual disability; certainly had never been embraced by anyone "like that". I guess my life had been pretty sheltered so far, except I didn't know that. I mean, how can you even fathom something you've never encountered? When I met Marcela, knew she was going to be a member of my family, something in my young mind opened up, and I realized that I needed to give Marcela a lot of understanding and as much kindness as I could muster. I'm ashamed to say that I wasn't ready for any of that on that Easter--I escaped to a friend's house. 

I am grateful to my mom for her understanding and patience with me. She explained that Marcela had been a healthy child, but had run an extremely high fever (I guess above 108 degrees) at some point, and had suffered brain damage. As my mom said, "Marcela will always be about 6 or 7 years old". Marcela lived in the Woodward State Hospital at the time, but could join us for holidays. The second time Marcela visited, I was a bit more prepared, and stayed around to get to know her. At the end of Marcela's visit, my mom asked me if I wanted to ride back to Woodward with them. Sure--I could to that. Little did I know that again, my world view would be profoundly altered forever. 

As we drove up the drive to Marcela's dormitory, Marcela became increasingly upset--she asked if she could come home with us, telling us she didn't want to go back. Soon, I understood why. I noticed the noise first--lots of shouts, squeals, talking. Marcela's demeanor had changed the moment she walked into the building--she was calm and in control--like she knew what she had to do. Two or three young women came to welcome Marcela "home"; at least two of them had Down's Syndrome (my guess is the hospital was divided by disabilities and mental state), and I didn't understand all that they were saying, but they were gentle and welcoming to us. We followed Marcela into an enormous open room filled with beds. Beside each bed was a chest of drawers and a metal locker. She showed us her bed, and finally smiled as she picked up "her dolly" and hugged it. When we left that day, I was so very grateful that I could leave, and troubled that there was a place like that; troubled that we needed places like Woodward. "Out of sight, out of mind" for most of society, and yet a lifesaver to parents who did not have the resources to care for their children at home. This was WAY before the ADA, and these humans had their basic needs covered, no more.

It was heartbreaking every time we took Marcela back to Woodward, but there were no other alternatives at the time. Our family was extremely grateful when the state of Iowa opened "group homes"--places more homelike, with dedicated and kind staff to watch over the young adults in their care. Marcela was so much happier, and lived most of the rest of her adult life in the same home--her home. At the group home, Marcela learned life skills, could hold a job (sometimes (like all of us) she didn't like her job and had to be prodded to go), went out shopping or to movies, and had a good life with her family and her "family" in the group home. A few times, she even asked to go back early to the group home--she didn't want to miss anything! 

When I went to college, I saw Marcela less and less. My mom would let me know how she was doing, and I must say I was amazed that Marcela flew by herself to visit my parents in their retirement home in Arizona--multiple times! Marcela thrived, and I'm grateful she had a good life. She always remembered who I was, no matter how many years had gone by, and I was always the recipient of that biggest hug. I think Marcela liked me best when I would bring my baby children to visit. You see, Marcela's job in Woodward had been to take care of the babies, and she never lost those skills, nor that love of babies. I knew my kids were in good hands with Marcela.

Marcela died this week. She outlived her parents, but my stepbrothers took such good care of her in her final years. I know that wasn't easy--Marcela could be soooo stubborn, and when you add to that her mental challenges, her care took a certain..."finesse". Many, many thanks to them, and to their wives!

Marcela liked jigsaw puzzles, M & Ms, babies, and soda pop. She was an acute observer of all that went on when she was home, and loved to talk about anything that caught her eye (sometimes repeating the same thing a lot--we all learned to be patient, which is a great skill to have). She enjoyed food, and the life she had. 

Marcela made this world a better place. She made me a better person, profoundly changing my view of the world. Had it not been for Marcela, I would not likely remember every single time I vote, or I use my voice for protest, or write my government officials, that I speak for those who have no voice. I act for those who cannot. I am aware that there are those of us on this planet who are "different", who are locked away, who are "out of sight, out of mind". And my actions as a human being, should be done with them IN MIND. Always.

Thank you, Marcela, for being my teacher.