by Kristen McFarren
Ihad just celebrated my first birthday when two days later, I received the best birthday present ever: my very own little brother, Jeff. I took on the big sister role immediately. I gave Jeff lots of hugs and lots of attention. Our bond was established early on. When I was laughing and happy, so was Jeff. When I was upset and crying, so was Jeff. Because I was so young when he was born, I couldn’t remember life without him and I only knew my brother, so it took me awhile to catch on that something was a bit different.
Sure, he didn’t look exactly like the other kids; he was cuter. I was proud to show him off. Okay, he did take longer to learn things, but I was anxious and willing to teach him everything he needed to know. But, why did people stare at us at the grocery store? Why did the neighborhood kids call Jeff names? Why didn’t he go to my school?
My baby brother was born with Down Syndrome. I don’t remember the exact moment it hit me because I think I gradually sensed his uniqueness. I also don’t remember my parents sitting me down and laying it all on the line. I think that they just answered my questions and explained along the way. What I do remember is the range of emotions and feelings I had as I gradually discovered that my brother was unlike any other and that my role as a big sister was to involve a lot more than I expected.
Jealousy, anger, sadness, guilt, love, pride, concern, fear, resentment and embarrassment are all emotions I have felt over the years in relation to my brother and our family situation. Some feelings I grew out of and some keep creeping back from time to time.
I experienced jealousy and anger a lot when I was younger because Jeff required a good chunk of my parents’ time, attention and resources. My parents also let him get away with destroying my toys (among other things) whereas if I were to do the same, I would be punished. This prompted me to tell my mom that I wish I had a disability. That’s where the guilt comes into play. I have made my fair share of insensitive statements towards my parents and Jeff directly that I didn’t really mean. In addition, I felt a sort of survivor’s guilt in that I could have been the one born with a disability, so I put the pressure to achieve on myself. I felt that I had to overcompensate and make it up to my parents and Jeff.
I became angry when Jeff was the center of attention- all kids want to shine. I was embarrassed of his disability as I tackled high school because we all know that high school is about fitting in and not standing out. How could I fit in when Jeff came to my school to attend plays, band concerts and award ceremonies? Don’t get me wrong- I love my brother- BUT for once I didn’t want to explain why he was different or why he didn’t go to my school. Why couldn’t he be NORMAL?
My parents were great. They let me experience and work through my feelings without telling me I shouldn’t feel that way. They provided me with knowledge and education so I could understand and explain Down Syndrome. I was never expected to be his caregiver or to cancel plans with friends or school to look after Jeff. They allotted me the freedom to choose the degree of involvement I wanted to have with Jeff. My mom and dad did the best they could for the both of us. We all faced and will continue to face many challenges and obstacles. We had bad times and good times, just like any other family without a child with a disability. Of course, it wasn’t always easy, but whose family is perfect? Whose family is normal?
Throughout my childhood, adolescence and now early adulthood, I have measured people’s “worth” by how they react and interact with Jeff. The people who talked to him, played basketball with him, weren’t afraid of him, didn’t make fun of him and treated him like a normal human being became my friends: they are good people! Dates and boyfriends were also subjected to the same test. Jeff tended to like one boy in particular: he claimed he was his best friend and that boy is now my husband; Jeff was a groomsman in our wedding at my husband’s request!
Adult life is bringing with it all sorts of new issues and concerns. I’ve always been concerned about Jeff, mostly from fear of what his life would be like as an adult. I remember crying to my mom worried that he would never drive, never marry and never have a family of his own. Yes, his life will be different from mine, but that doesn’t mean it will be a bleak future by any means. I know that I will eventually be Jeff’s support when my parents pass on. Fortunately, I married a man who has accepted Jeff and understands that we may have Jeff live with us in the future. Planning for our future and Jeff’s future is difficult and interesting at the same time. We’re all learning as we go
As I reflect on my relationship with Jeff, I wouldn’t change a thing even if I could. I enjoy telling people about my little brother, although he isn’t so little anymore. At 27 years old, he loves movies and eating. He loves to laugh with his whole body! He likes dancing and singing at the top of his lungs, whether he knows the words or not. He is the most polite person I know. You’ll never hear him yell or object to anything. It is through his personality and peaceful outlook that he has taught me unconditional love and wonderment at the world around us.
I was and still am Jeff’s protector and defender. When we were kids, he’d seek comfort from me when he was upset or scared. Now, he knows that my house is his safe haven if ever he needs me. As kids, I’d stick up for him when kids would tease or be mean. Now, I try to inform myself about disability rights so I can defend his rights as a free-willing individual in our democratic society.
Of all the roles I take on or have had in the past, I am most proud of my role as Jeff’s big sister! Neither Jeff nor his disability define who I am BUT I am the person I am today because of what I have learned from Jeff. He has overcome great barriers; he participates regularly in Special Olympics, he graduated from high school, he is enrolled in an adult day program that helps him enter the work force. We’re not all that different. I see him on a frequent basis and he always greets me with his sly grin. My ears delight as he calls me his “sissy;” to me, it is the sweetest sound in the world. As his big sister, I couldn’t ask for more.