Over the last fifteen years, since my previous entry in the Eden Sibling Book, quite a lot has changed, but plenty of things have also stayed the same. I graduated from college, went to grad school, and have had multiple exciting careers in between. Alex moved into an Eden group home – where he is living with his roommate, supported by Eden staff, and enjoying new hobbies and activities. I have travelled the world, and found love; and Alex has also travelled the world, and made new friends – many through the Eden community. Alex still likes touching (and sometimes pulling) my hair, and I still lose patience when he makes repeated loud or high-pitched noises. We still do exercise videos together (or just watch them together, if we get too tired). We still sing James Taylor songs. We still hang out with our parents on many a weekend, enjoying Mom’s home-cooked meals. We are still – and perhaps even more than ever – best friends.
For this year’s reflection, I’ll focus on three of the lessons Alex has taught me. Alex has made me – as well as so many others – a better member of the community: a better friend, colleague, and mentor to others.
We live more fully and honestly when we immerse ourselves in each moment. Lots of people say this, but very few people model it repeatedly. Alex is always in the moment: he grins from ear to ear as Mom dishes out a plate of pasta; he glows with happiness as he moves his body to mimic Richard Simmons; he hums with excitement as he sits next to Dad at a baseball game; and he opens his eyes a little wider as a pretty waitress brings our food at Easter brunch. He does not hold back. With little in the way of structured conversation, Alex manages to convey a great deal through his expressions. He lives OUT LOUD. This also means that when he is angry, he shows it. He makes a sharp squawking noise to express his extreme displeasure. He tightly furrows his eyebrows when he feels his schedule has been disrupted. Sometimes, unfortunately, things turn physical. Living out loud isn’t always pretty, but he never means harm. While I would not want to gloss over his struggles with emotional regulation, there is incredible beauty in the majority of Alex’s self-expression and engagement. He is the embodiment of pure love, pure joy, and pure wonder. Being able to witness that, to be a part of it: this is the privilege that it is to be Alex’s sister. He has helped me immerse myself in the world, feel all of my emotions, and allow them to feed my passion for life. That passion has had a ripple effect on those around me. It is infectious. It spreads quickly. Alex has had a much bigger impact than he may ever fully know.
We are extensions of each other. Since my previous entry in this book, the frequency with which I tell others about my brother has skyrocketed. I went from reticent to tell my friends about Alex in middle school and high school; to more open about my experiences and relationship with him in college; to beaming with pride to share stories about him in my post-college life. At first, I often questioned myself: am I speaking “for him?” But what I have realized is that: I can extend his impact through my words. One of my core strengths is my ability to tell compelling stories and connect with others through that storytelling. There is now a chorus of voices in my life asking about Alex. Thinking about him. Knowing and loving the stories behind the photos I share. And, in addition, seeing Alex through the eyes of others has deepened all of our relationships. One of the key groups of people that has embraced Alex has been my boyfriend Steven and his family. Steven and Alex have all kinds of secret handshakes and ways of connecting nonverbally through the sports and music they enjoy. Steven’s family members love and accept Alex exactly as he is. Seeing Alex through their eyes has made me feel so much closer to them, as well as to my brother.
We can defy expectations and keep pushing our own boundaries throughout our lives. There was a time when Alex could not get through an afternoon without a meltdown. A time when he would repeatedly hurt himself out of sheer frustration. A time when his primary food group was french fries. While he still has his difficult moments, he has made so much progress. Today he is living harmoniously with a roommate, competing in Special Olympics and various recreational leagues, riding horses, going on fun excursions with Eden participants and staff, doing various jobs and volunteer work, and eating a variety of foods (and continuing to try new ones). Alex travelled with my parents to Kenya while I was living in Nairobi, and we spent a life-changing week and a half there together. He has defied all expectations, and he continues to push his own boundaries. The other day I found him at his computer station in his apartment reading the news and watching some video clips on current events – avidly digesting this information. He continues to grow and evolve, and it has been a beautiful thing to be able to grow and evolve alongside my best friend over these past fifteen years.
I look forward to what the next fifteen will bring.
— Sarah Rich, Sister of Alex Rich