by Julia Rice
It is typical of our culture to push away things that are not picture perfect. We constantly push away people, cultures, and religions, averting our eyes from things that drive us out of our comfort zone. From slavery to the civil rights movements, this has been a problem in our country for centuries. But how can we say "Hooray for different races!" and "Hooray for women's rights!" if we cannot accept the diversity of America's children?
I go downstairs and see her nestled on the couch, singing along to Aladdin's "A Whole New World."
About a hundred different colors of Crayola crayons lie about her, and she is meticulously coloring in every detail of a Disney princess from her coloring book. She looks up at me with those little round eyes and gives a simple "Hi" and goes back to work. Jenny is not my younger sister; she is not a child at all. Jenny is my aunt who has Down syndrome.
Aunt Jenny is my mom's baby sister. She may seem young, but she just turned forty-three years old. Life was not always easy for Jenny. She developed leukemia at five years old, and the next years of her childhood were filled with radiation, chemotherapy, and trips to the hospital. By some miracle, she overcame the life-threatening cancer. However, as Jenny grew up, her life did not get much better. Her parents developed alcohol problems, and life at home was difficult. My mom has told me stories of hiding Jenny in her bedroom so that Jenny could not hear the fighting downstairs. As time went on, Jenny suffered (and still suffers) from cognitive delays and various other medical problems. As her siblings got older, Jenny started living for increments of time with my uncle, my grandmother, and my mom. And, ever since I can remember, Jenny has come for a month in the summer to live with my family. Those months have impacted me in ways I do not think I will ever fully come to appreciate.
When I was younger, Jenny was like a playmate to me. We would sit on her bed at my house late at night, Jenny in her Disney princess nightgown, me in my Sesame Street nightgown, listening to Fox and the Hound on her cassette player. After lunch, I would sit down to watch a movie with Jenny. She would sing along to every single song, and give a running commentary throughout, saying things like, "You have no right to steal those Dalmatians, Cruella!" My sisters and I would giggle and giggle when she would make her "animal noises." We would name an animal, say, a chicken, and next thing we knew, a loud "COCKLE DOODLE DOO!" would ring through the house for a good five minutes. She never ceased to make us laugh. She was always great company.
However, as I got older, her visits seemed to become more of a nuisance to me. I became more aware of her mental problems and faults. Jenny has a "second personality" where she will scold herself after saying or doing something unkind. She has an ongoing conversation with herself, muttering things like, "You need to cut it out" and "You need to apologize, Jennifer." We never knew exactly with whom Jenny was talking, and I was often embarrassed if I walked in on her talking to this other person. I didn't know what she was talking about, but I knew it was not normal to talk to yourself.
I also became more aware of the fact that Jenny looked terribly different, ugly. She is less than five feet tall and has a problem with being overweight (a common problem for those with Down syndrome). She has very short, stubby legs, a big round belly, and flat facial features with small round eyes. Around middle school, I felt that if people saw my Aunt Jenny, they would see me as less beautiful. This scared me, and I often felt embarrassed by her.
I also began to notice the level of discomfort my friends felt around Jenny. They did not really know how to act around her. Jenny gives hugs to everyone she meets. This is strange to some people and sometimes hard to handle. One time, I had a friend over and Jenny completely stripped down in front of her. My friend gave a nervous laugh and left the room. I scolded Aunt Jenny, then went out of the room, mortified as I apologized to my friend.
Nevertheless, as I grew up, my mom showed me how to treat Jenny with patience and love. She always treated Jenny with the utmost compassion. Since my grandmother was not always there for my Aunt Jenny, my mom stepped into the mother role. When my mom and dad first dated in high school, they took Aunt Jenny everywhere with them, to the movies, or just hanging out downtown. She has always been a huge part of my mom's life, and it was this relationship my mom had with Jenny that taught me how to love her. My mom still loves to spoil Jenny when she can, often buying her new crayons and coloring books. Every day Jenny is with us, my mother truly celebrates my aunt's Down syndrome. To my mom, it is a blessing, a condition that takes away all social barriers, all filters, and shows the real depth of the human heart. My mom talks about children with Down syndrome as if they were precious gems. Her attitude is so different from most people's. By her example, I learned to celebrate Jenny as well. I learned that there is no need to feel embarrassed by her. I also learned that her condition is not one to be pitied. Jenny is a person of a whole different category: different, but worthy of admiration.
Now, as I have gotten older, I realize the beauty that is in Jenny. She sings extra loud in church, and, even more so, off-key. But I know for a fact that her worship is much more intimate than my own. She often tears up during songs and squeezes her eyes and hands tight during prayer. She may often say brutally open comments, ones that make you give an uneasy laugh and cover her mouth. But even though Jenny has "no filter," as my mom likes to call it, I catch a glimpse of what we would be like if society didn't always tell us what is appropriate to do and say.
Contrary to popular belief, Jenny's Down syndrome does not limit the quality of her life. In actuality, I believe it heightens it. She possesses a kind of unconditional love like no one I know. She loves people, animals, and especially little children in a way that is refreshingly real and pure. This is the way Jenny loves me, even telling me one time that I feel like a daughter to her.
Jenny's life is full of happiness. No, she cannot function as well as the rest of us, at least as defined by society, but she is able to do the things she loves like coloring, reading, and singing. These things are so simple that sometimes I wish I could be so easily satisfied!
Society tells us that these children are burdensome and hard to raise. According to recent statistics, close to 90% of Down syndrome babies are aborted (Starr). Jenny has been hard at times, but her life has brought so much light into the dark corners of so many hearts, that she is no burden. Her life is an unexpected blessing--an invaluable gift wrapped in plain brown packaging.
This of course is often hard to see when looking ahead into the future. I know a couple that found out they were having a child; however, when they found out the baby had Down syndrome, the mother isolated herself in her house trying to decide what to do. My mom made every effort to tell this woman that she would adopt the baby if she would just go through with the pregnancy. But it was too late; the woman had gotten an abortion. It broke my mom's heart, and she held on to my Aunt Jenny, and cried tears of sadness. She prayed for the little girl and wondered who she would have been had she been allowed to live. This was a tough decision for the mother, and my mom continues to pray for her. She prays that even though this lady decided not to keep the baby, she may one day realize what a blessing she denied.
I have come to realize that a disorder is not a terrible thing. Beauty goes beyond skin deep, and happiness beyond medical problems and mental disorders. I would never have known this if Jenny had not been in my life, and would never have realized the full meaning and beauty of God's creation and perfect design. Jenny does not know the impact she has had on my life and probably never will, but that is the amazing part. She has unknowingly shown me that life is so much more than intelligence and outward beauty. She has shown me that life can be lived to the fullest through love.
Starr, Penny."'Eugenic Abortion': With Pre-Natal Testing, 9 in 10 Down Syndrome Babies Aborted." CNS News.com. 13 Oct. 2008. Web. 18 Oct. 2009.
Julia Rice is a Nursing major at James Madison University, hoping to pursue a minor in Family Studies. Aunt Jenny, whom this essay is about, plays a major role in Julia's life today. She has inspired Julia's desire to one day work with special needs children, caring for them and celebrating their differences. Julia is most thankful for her parents and older siblings who have made such a profound impact on her life. Through their love and example she has learned, and is still learning, what it looks like to live to serve others.