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Family Story |
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SIBLING STORY Submitted by Kristen McFarren, Kansas City Center
I had 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 |
