I Wasn’t Always an Only Child

One of our contributors wrote an amazing and heartfelt post. While I thankfully don’t have to come up with an answer to that particular question, it got me thinking about my hard answer to a very innocent question.

I struggle very deeply with the question, “Are you an only child?” because answering it truthfully will inevitably start a conversation that I’m uncomfortable having with many people (even those closest to me).

I am not an only child. My brother Joseph (Joey as we called him) was born on July 25, 1986. I was 3 years and 9 months at the time. To say I had a case of jealousy would be an understatement. If you ask my parents, they would probably describe a little monster of a sister who threw magazines at the new baby and would “accidentally” try to trip her mother as she walked her brother to sleep. (I can’t be the ONLY child who did that – right?). Eventually, we settled into a family of four. Granted, I don’t remember much of the early days of being a toddler myself.

One thing I do remember is always waiting. Waiting for my brother to get up from the floor or waiting for him to chase me the way my friends from the neighborhood would. No matter how long I waited, he never seemed as fast or as agile as my little friends or me. Now that I’m a parent, I’m acutely aware that my parents were waiting even more impatiently than I was.

When you’re a parent, you just know when something isn’t right, and my parents knew. My mom told me about a conversation she once had with my grandmother where she said, “I just feel like something is REALLY wrong with Joey.” To which my grandmother replied, “That worries me because if a mother feels there is something really wrong, then there is.” And there was.

My brother was diagnosed with Duchenne Muscular Dystrophy (DMD). DMD is a genetic disorder that progressively weakens and degenerates all the muscles in the body. If you’ve ever seen Jerry Lewis’s telethon on Labor Day Weekend, then you know this disease. The answers as to why my brother couldn’t run fast, couldn’t jump with two feet off the ground at a time, couldn’t climb stairs were all answered with one muscle biopsy.

I don’t remember when I figured out on my own that my brother’s disease was terminal, but I remember just figuring it out logically. I knew the heart was a muscle, and if this disease degenerates and weakens ALL the muscles in the body, then surely the heart would be weakened as well. Unfortunately, I was correct. As my brother grew older, he grew weaker. Where walking slow was how my family traveled, we eventually traveled in a wheelchair. We traded our 4-door sedan for a handicapped van with a chair lift. By the time I was in high school, my brother was confined to a wheelchair completely. When I was in college, my brother was completely dependent on others to care for his everyday needs.

After college, working, and recently engaged is when my brother’s health took a dramatic decline. He suffered a stroke which kept him in the ICU. I visited after work, and one day I saw I had a ton of missed calls on my cell and work phone. It was a call that didn’t require more of an explanation other than what the voicemails said, “Get to the hospital as soon as you can.” (I’m forever grateful to my co-workers who saw me panicked and made me take a few seconds to breathe). The hospital (and my family) realized there was nothing more they could do for my brother and asked us if we wanted to take him home. We left the decision up to my brother, and he wanted to go home, so we took him home.

My brother passed away on April 8, 2006. Just because you know something is coming doesn’t make it any less difficult to deal with it. We all deal with difficult things in different ways. Some like to talk about their feelings constantly, and some don’t. I’m the latter.

I don’t like to talk about my feelings surrounding my brother’s death and the lingering questions that I have. (My husband and a few close friends can probably count on one hand the number of times I talk about this).

I often wonder what my life would’ve been like if my brother had been healthy. Not just what my childhood would’ve been like but what my life would be like now. Would I have nieces and nephews running around for my kids to play with? Would my brother and I have a close relationship, or would I still be that monster of a sibling that I was when he was born? The hard part is that no one knows.

What I do know is that if I were to answer, “No,” to the question, “Do you have any siblings?” I would not only be lying, but I would be doing my brother and my entire family an injustice. To act like his existence never happened simply because he’s no longer with us is not something I’m willing to do. So my difficult answer to that very innocent question is, I’m my parent’s only living child. However, I’m not an only child.