What does my relationship with my sister look like today? All of my other posts have focused mostly on my experiences growing up with Rachel – but what do my experiences with her look like now?
In some ways, it’s the same. I still don’t interact much with Rachel, in part because of our differences, and in part because we don’t live in the same state anymore. When I was 18, I left to go to college out of state, and even took classes during part of summer. Since then I have never really spent that much time living in the same space with my sister.
While I was in college in Arkansas, Rachel stayed home, still attending her high school for a few extra years (I think until she was 22.) After that, she began attending a day program for adults. The program organized activities and events, and it allowed Rachel socialization (on the small chance she desired it). I know some day programs train people to develop skills that they will need to have either at a job or to live on their own – we knew Rachel would never live on her own or have a job, so she did not need skills as such. But the program was tailored to allow people to function at their individual levels.
In the past few years, Rachel has transitioned to living in a group home after living with my parents for over 30 years. It’s a normal-sized house, with Rachel being one of three people with disabilities living there. A mother and daughter are the caretakers, and it’s actually a very nice set up. Each person has their own room, and Rachel still gets to go to her day program on weekdays. My parents spend Sundays with Rachel – they pick her up from the group home and take her to church, and then have lunch together afterwards.
The decision to move Rachel to a group home was not an easy one, even though it was the right one (I suppose I’m speaking for my parents here.) I remember talking with my mom and dad about how they wanted to find the right place for Rachel to live, and didn’t want to rush the decision due to an emergency or crisis. The transition went better than any of us imagined (change is hard for Rachel, after all) and Rachel seems to be really thriving in her new environment. It’s nice to see. I think Rachel knew that it was a big, important milestone for herself. I think she likes the independence it brings having her own space away from mom and dad – just like any other grown child feels.
Some people have a hard time understanding why this was the right choice. I remember some years ago (ca. 2011?) I was asked to be on a panel, broadly discussing the topic of disabilities, to share what it was like to have a sister with autism. At this point I was already married and living in a different state than Rachel. I was happy to share my experiences (I still am), but I distinctly remember a young man asking me the question, “will your sister live with you one day?” (He had a brother with autism, and I think he was very interested to get the chance to hear from someone else in a similar situation.) The “one day” he was talking about was the potential day when my parents could no longer care for Rachel, due to age or illness. I answered him truthfully and said, “no – my parents have never expected me to do anything like that.” I remember the way his face fell, and the apparent disbelief he had with my answer. It had never even occurred to me before this panel that some people would find my family’s choice to put Rachel in a group home someday as a “bad” choice. And to this I say that each person is different, and their needs are different. For some people, a group home is a wonderful choice. For some people, it may not be. There’s not a one-size-fits-all approach to parenting a child with limited abilities.
Unfortunately, it’s not really a new experience for me to have someone misunderstand my relationship with my sister. I remember multiple times after I went to college, people would ask me, “does Rachel miss you when you’re gone?” And I would (again) truthfully answer, “not really.” Maybe my answer was a bit blunt, but people always seemed so disappointed when I said this. They wondered if Rachel would get excited when I’d arrive back home from college after being gone for months, and the answer was just “no.” It really didn’t matter to Rachel one way or the other if I was there in the house or not. That’s kind of how our relationship had always been: side by side, each doing our own thing.
You may wonder how growing up with my sister changed me as a person, or how it affects me today. Part of me wishes that I could say that I’m a better person because of it, and that I’m so thankful for the experience despite the hard times… but if I’m honest with you, I don’t feel that way. Maybe that’s a disappointing answer (hey, I’m used to disappointing people with my honesty!), but that’s where I am right now. I know certainly that I must be a different person than I would have been if I hadn’t had a sister like Rachel, but I’m not sure I can pinpoint exactly what those differences are. I’m not sure how much of myself to attribute to my general personality or to this experience. I think that’s because I have nothing to compare it against, no before and after. I literally always had my sister around, we came into existence at the same time.
Maybe some of my anxiety issues came about from growing up with Rachel (maybe I would have had them anyway.) Maybe I became a more responsible kid (and adult) because I was given freedom and independence very early on – that is to say, my parents had their hands so full dealing with Rachel, and I soon came to realize that they valued me being able to take care of myself. I will say to this day that I’m still very protective of my personal belongings – I don’t like for people to use them or touch them without asking (I know that’s most likely a direct result of growing up with Rachel!)
Despite all the hard times, there were also good times brought about by Rachel. They have been harder for me to find, but they exist. To end this series, I’ll share one of my favorite experiences that I’ve had, that I know was only possible because of Rachel. It takes place at Disneyland (go figure!) back in 2012 at Christmastime.
Disneyland has this event called the “candlelight processional” where they essentially tell the story of the birth of Jesus by use of a huge choir and reading of Scripture (they get a special celebrity guest to be the reader). The event takes place on Main Street, and there are limited seating options (I think it’s a ticked event). Everyone else can watch by standing on the sidelines, kind of like lining up for a parade. Obviously it’s a hugely popular event, and tons of people are all crammed together to try to see the show. My family and I were standing among the crowd (we did not have tickets) and it was at the end of a long day; we were tired, and it was mildly unpleasant to be so tightly squished together among so many people. I remember my sister decided just to sit down on the sidewalk, probably because of how tired she was. All of a sudden, a Disney employee asks my mom how many are in our group. We told them “4” and they said, “follow me.” We get led through the crowd to the ticketed-only seating area. Not only that, we get lead to 4 open seats in one of the rows near the front.
I remember feeling incredulous as it was happening. I could not believe there had just happened to be four empty seats, and that of all the people that could have been chosen, (there were hundreds, if not thousands, of people standing around!) it was my family. The event was literally one of the most beautiful things I have ever experienced. The choir was amazing, it reminded me of what I’ve always thought heaven would be like – a multitude of angels singing praises. The celebrity guest that night was Molly Ringwald, and she read through the first few chapters of the book of Luke, taking breaks for the choir and musicians to perform. I think the event was made even more meaningful for me, knowing we were picked out of the crowd, mostly (I believe) because of my sister. She had been sitting in the middle of hundreds of people standing around, I’m sure somewhat of a liability. Maybe that was why we got moved… but maybe we got picked because the Disney employee that night just knew there was something special about Rachel, and that we needed to experience this event up close and personal.
Thank you so much for reading through this series. It has been a meaningful one for me to write, and I’m so glad, on a personal level, that I did it.
There are many more stories that could be told, and many more people who have Rachel stories of their own. As I’ve said before, I know being a parent to Rachel came with its own unique set of challenges and stresses, and I respect my parents so much for their commitment to raise both of their daughters the best they knew how. It took a lot of strength and energy, and I’m not sure I could have done it.
I like the person I’ve become, and even though I’m not sure of all the specifics, I’m sure Rachel played an important part in making me who I am today. I’m still working on finding joy in my experiences with her (don’t worry, I’m still going to therapy!) and I hope in the future that more of those bright spots will stand out to me. I know that through all this I have gained great empathy for others in similar situations, and empathy is a great gift to have in this world. For that I am thankful.
3 thoughts on “My Sister Rachel (Part 6): Grown Up”
Love the memories of the candlelight processional… that was amazing! Dad
Thank you, Erica. Beautifully and honestly spoken.
Thank you for telling your perspective. I think that was important for me to read, having three children whose sibling has autism (+DS). It is sometimes too easy for the child with special needs to outrank the children without them, and all kids need love and attention. I have to watch out for putting the needs of and responsibility for our youngest onto the others.