May 09, 2013 0 Share

Twenty-Six and Counting


The author's brother as a baby being held by his father.
Photo by Donna Fischer

When I was younger, being 25 years old seemed tremendously grown-up. My closest friends felt the same way; we didn’t talk about our lives beyond that year, because it seemed like a future so distant that it would never become the present. But now, the unimaginable is made real; I’m nearly 28, and my brother Willie is turning 26 this week. As always, he’s been counting down the days. When I think of him eagerly awaiting his birthday, I realize that, with every year of his life, Willie himself has been a gift. Here’s my “countdown,” 26 gifts and lessons he’s given me: 

1. Willie’s birth gave me the privilege of being an older sister, and the realization that, contrary to what I believed at the time, I am not the center of the universe.

2. I learned early on that life can change in an instant; after all, being in a diagnostic center was my first memory.

3. My first specific memory of Willie involves me snatching the remote, and him biting my hand in return. Lesson: Actions have consequences, and little brothers bite!

4. Once upon a Christmas, Willie and I played with a new Noah’s Ark. I remember Willie marching the animal pairs up and down, and realizing that the shared experience was the best part, that the best things in life aren’t things at all.

5. Willie gave me inspiration to start writing. My first book, entitled, “My Brother,” was a big hit with my first-grade teacher.

6. Shaken by Willie’s diagnosis, our family began attending church. We connected with the community and formed lifelong friendships. Grief led us into new places of belonging.

7. When Willie and I played together, his goofy sense of humor freed up my studious self. I loved having a sibling with whom to run away laughing.

8. When I hosted my first sleepover, Willie participated with eagerness. I saw that including him in my life didn’t have to be awkward, that I could give people the benefit of the doubt. 

9. As Willie’s sibling, I learned to be selective about friendships; I learned a great deal about people based on how they interacted with my brother. 

10. Thanks to Willie, I was introduced to a fellow “autism sister,” and she became a close friend.

11. When I entered middle school, I longed to be “popular.” However, being Willie’s sister meant that I wouldn’t compromise my integrity to do so. 

12. Skiing with Willie gave me the thrill of fear, and the knowledge that risk is part of what it means to be alive.

13. Seeing the world through Willie’s eyes showed me that everyone has a different perspective; one person’s parsley and meatballs is another person’s, It’s still growing!”

14. Being Willie’s sister gives me compassion for wallflowers; I approach those on the sidelines.

15. When Willie entered middle school, I was proud to see him join the track team. Years later, when he was expelled from high school, he’d say, “I want to go back to [my] middle school,” stare at his track team photo, and weep. All at once, I saw how much being a part of a team mattered to him. I could never again assume that his tendency to withdraw means that he doesn’t want to join in.

16 through 22. When Willie went through years of catastrophic behavior, my family went through hell … and we were given, again and again, the gift of knowing that love endures all things.

23. Hearing Willie play the piano has been a stunning experience of redemption; in the music he plays, I hear all the control, precision, and beauty that is sometimes absent from his behavior.

24. When I bought Willie a dog book last year, I didn’t mind that the gift might be destroyed. Willie has taught me the distinction between what is and isn’t in my control.

25. Thanks to my work at Autism After 16 and elsewhere, our family’s story is featured in a new documentary, “My Brother,” by filmmaker and American University professor Edwin Mah.

26. With every passing year, I am prouder of my brother for who he is and is becoming.