Awareness Makes All The Difference

Editor’s note: While this article is a little longer than our usual pieces, we encourage you to stick with it until the end. It is written from the heart, and the message is truly special.

I can’t remember the moment my parents told my brother and me that our new baby was not going to be like us.

I was 3 and my brother 1 when my littlest brother was born. My mom’s pregnancy seemed to be like her other 2, but something had gone wrong. At 28 weeks she went into labor while ironing my dad’s shirts in our suburban home. She was rushed to the hospital, and Josh and I were rushed to my aunt’s house. After an emergency c-section, my brother weighed just 3 pounds.

In 1975, 28-week babies were a different story than today, when many 3-pound birth babies eventually thrive, perhaps mentally or physically delayed, but are not doomed to the same fate as those babies 30 some years ago.

At Evanston Hospital, a nurse woke my mother that September night and asked her and my dad gently to name the baby because he simply was not going to make it. As tears rolled down both my parents’ faces, they agreed to call their little tiny baby Christian Andrew.

Christian was a fighter by nature, and not only did he survive that night, but he also made it for 2 long months in the hospital until doctors agreed to let my parents bring him home. My mother says that she remembers coming to the hospital every day because she was pumping milk and needed to feed him.

Josh and I were shifted around between neighbor’s houses, church friends and relatives. Once Christian came home, it didn’t get any easier. He not only needed constant care, but he also got sick easily because his structure was so weak. Not knowing what to do with him at night when he cried so much, my parents took shifts driving him on the Eden’s Expressway to calm him enough to sleep.

Two long years of homebound living, constant stress and complete unbalance had taken its toll on my parents.

I remember my mom being all dressed up in a beautiful green-and-white wrap dress. She was so tall and skinny and she wore this gold bracelet, and I thought she was the most beautiful person I had ever seen. I was 5 years old; she was just 30. She looked so chic, and her long blond hair fell around her face as she told us she was going out to dinner with my dad. I am not sure they had gone out to dinner in years.

She kissed Josh and me, and as they were about to leave, Pat, the woman taking care of us said that she thought my mom ought to look at Chris. He didn’t seem to be breathing right.

The next thing I remember was sitting on the floor of the ’70s-style green bathroom my brothers and I shared, watching my mom steam up the room so that Chris’ lungs would open up.

Her hair had fallen from the steam as she sat in her dress, barefoot on the cold tile floor. I remember the sadness I saw in her face, and at the same moment, the pure devotion and gentleness she showed to this little child sitting in the bathtub. That image will never leave me.

My dad’s parents visited us from southern Illinois later that year. My grandmother read an article in the “Chicago Tribune” about a home for children like Christian. A home that would be able to provide constant and loving care, a place that could handle the round-the-clock care that he desperately needed. My mother told me the story years later about when her mother-in-law suggested considering just looking at the home.

I remember being surprised at how my parents learned about Misericordia.

My mother, a strong-willed, independent-minded woman wanted no part of this at first. In fact, when she agreed to go look at the home, she insisted on going alone so she could just drive around and come back home without even looking and say that it wasn’t right for our family.

Yet, as she drove away from our house that day, I am quite sure that all those tireless days and nights, the grief, the loss she must have felt, and the sadness of not being able to take care of Christian and the rest of us—not to mention herself—caught up with her.

When she arrived at Misericordia, she was greeted by a woman named Sister Katherine whose empathy impacted my mom profoundly.

After my mom left the home, she knew what she had to do.

As a mother now myself of 2 little ones, I cannot even begin to imagine what that drive home must have been like for my dear mom. The very thought of not seeing one of my babies’ faces every morning, healthy or sick, would have be unbearable.

Her strength and conviction of spirit still inspires me today.

After my parents placed Christian at Misericordia, we saw him often. He came home many weekends, and I loved playing with him. He was little and so cute, and I remember how he loved to sit in front of my mother’s closet doors that were made of mirrors. There were 6 mirrors that moved as we opened and closed them, and we would laugh and play there for hours.

I loved to dress him and brush his hair. My brother Josh would play with him, too, and he would roll a ball to him and run to him and help him roll the ball back. He would do this endlessly, convinced that he could teach him to roll a ball. Christian never did learn to roll a ball. Or say our names. Or interact with us as we had dreamed he would.

I remember walking into Misericordia with my mom one warm Sunday afternoon while my dad and my brother waited in the car. We walked Christian into this friendly, bright room with other children just like him. My mom and I gave him hugs and kisses and said goodbye.

As we were leaving, I looked back at him to give him a wave, and he started to cry really hard. I stopped my mom, extremely upset, and said that we couldn’t leave him. My mom told me gently that we had to go. The realization that our family was broken apart tore at the very core of my being.

I didn’t know anyone at school or church who had a brother or sister that was different. When a group of girls at school asked me how many kids were in my family, I said that I had 2 brothers. They knew Josh because we were close in age. When they asked me what grade my other brother was in, I had to think about what to say. At that time there were no special education classes at mainstream schools, so when I told the girls that my brother was born early and had to live in a home away from our home, I remember seeing blank faces and feeling awkward and different.

No one really said anything, and we went into music class. For years, I gave the same response when people asked me about brothers and sisters; you can’t imagine how much the topic comes up as a kid. Once, I thought about saying I had just one brother, but the guilt would have made me feel badly for the rest of my life.

It wasn’t until I was working toward my M.A. in teaching that I visited my brother at Misericordia and had a different outlook about where he lived.

I knew it was a wonderful place, but the day I shadowed him for Special Education credit hours, I saw Misericordia not only as a sibling but also as an observer. Christian and I went to physical therapy and the sensory room together. We had lunch and spent time in his dormitory-style room.

He was happy and comfortable and each and every person that cared for him that day completely blew me away. Each person was so patient and really seemed to know my brother well. They knew his personality and valued him. Each person was caring and kind, and did I say patient?

I remember calling my mom when I was leaving and telling her how amazing Misericordia was because of all the things I saw that day. Inside, I think she felt happy because it verified what she had already believed: that Christian was in the right place, a loving and safe environment where he was able to thrive and grow and develop at his own pace.

After my brother Josh and I had our own children, our perspective changed. We shared with my mom and dad what a truly amazing job they had done with our special brother and with the situation they found themselves in with our family.

Having a baby that would never say “mama” or “dada”, a child that would never hit a baseball, a son that would never come home covered in mud, a teenager that would never borrow the car, one who would never graduate from college or get married and have children. They had a child that would need to be cared for like a baby for the rest of his life, who would teach giant lessons about life in the most silent way.

Being aware of the silent lessons Christian has taught my family is what has made all the difference.

Christian has unknowingly changed the way I live each and every day. Some of the lessons I learned were basic: to appreciate every moment and not take one single thing for granted. I have learned that showing kindness to every human being—no matter what they look like—makes me feel better than anything.

I remember people staring at my family when we were out in public with Chris, and when I see someone in public with a person that looks different, I always look straight at them and smile. Because of knowing Christian, I am reminded to find wonder in the magical moments that come my way, and that the simplest things like laughter and love should be valued above all. Being aware of the passing moments of my life has made me live my life more fully.

Today my mother took Christian to the dentist’s office.

She stopped by my house on the way back to Misericordia Home so my children and I could say hello to my brother. As my 2-year-old daughter waved goodbye to Uncle Christian, my heart sang and leaped. She said 2 times to make sure he heard her, “Goodbye, Uncle Christian; goodbye, Uncle Christian.”

She was only aware that he was my brother, and that if I loved him, then she did, too.

Her tiny body on our front lawn with her little hand up in the air waving like a little queen coupled with her soft light voice floating on the warm air carried across time. If my children can be aware that a person, family member or not, that is different can still be full of love and life, then sustaining that belief is of the utmost importance.