His name is Steve, and he is one of my brothers. Steve has Down Syndrome. And I'll just say it: He is my favorite brother. No. 1. The best.
But...
Growing up with Steve wasn't always easy. Things were far from calm. Steve was prone to outbursts. Think toddler tantrums, fueled by frustration, but in a bigger, stronger body. In general, Steve had little control over his emotions. When he was upset or angry, these episodes ensued. My dad would hold onto Steve, in bear-hug fashion, until the boy ran out of steam. And then Steve would cry, and say he was sorry. He meant it. And we all always forgave him. Always.
Likewise, Steve's tender feelings flowed freely. Steve could be silly and sweet, bursting with love and affection. To this day he is the only person in my family of origin who has ever said "I love you" to me. And he means it. Always.
Some unkind kids in the neighborhood used to tease Steve. It made me so sad. I couldn't understand why anyone would be cruel to or discount someone who is different. I still don't understand. I never will.
When we were growing up in the 1950s and '60s, when Steve was supposed to start school, there was no place for him to go. My parents, together with other families of special needs children in the area, went to the school board with a plan and demands. The first special education school opened in an old firehouse. Eventually, more buildings were built, and basic needs were met. But students with disabilities were segregated for decades.
It was the same with church. Steve didn't go to Sunday School or worship with us at our Lutheran church. Rather, a Baptist parish in the center of the city provided religious experiences, including Confirmation, for the members of Steve's class. He learned to recite the Lord's Prayer like a pro. And at home, led by our grandma, he said "Now I lay me down to sleep" and sang Jesus Loves Me together with my brothers and me every night. Steve knows and loves God.
For many years, Steve attended Christmas Eve service with my family - husband Mark, children Heather and Ryan, and me. We loved to sing carols together, brother and sister, side by side, Steve crooning in his earnest, honest, low tone.
At the end of the service, lights were lowered, candles passed. Could he be trusted with a lit, drippy candle? Absolutely. As voices rose - "silent night, holy night" - and as wax fell, this gentle guy would stare intently at his glowing, flickering flame. Then he'd wave and say: "Hi, Grandma" (she passed away in 1977), and years later, "Hi, Mom" (our mother passed in 2000). And then I would cry. Always.
Steve absolutely believed that he was communicating with heaven. His faith is sure, his heart pure. In the presence of God, at the birth of the Christ child, in that candle-lit, sacred place, all was calm, all was bright. May we embrace this example of love and faith this holy Advent season.
But...
Growing up with Steve wasn't always easy. Things were far from calm. Steve was prone to outbursts. Think toddler tantrums, fueled by frustration, but in a bigger, stronger body. In general, Steve had little control over his emotions. When he was upset or angry, these episodes ensued. My dad would hold onto Steve, in bear-hug fashion, until the boy ran out of steam. And then Steve would cry, and say he was sorry. He meant it. And we all always forgave him. Always.
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| Karen's brother Steve |
Likewise, Steve's tender feelings flowed freely. Steve could be silly and sweet, bursting with love and affection. To this day he is the only person in my family of origin who has ever said "I love you" to me. And he means it. Always.
Some unkind kids in the neighborhood used to tease Steve. It made me so sad. I couldn't understand why anyone would be cruel to or discount someone who is different. I still don't understand. I never will.
When we were growing up in the 1950s and '60s, when Steve was supposed to start school, there was no place for him to go. My parents, together with other families of special needs children in the area, went to the school board with a plan and demands. The first special education school opened in an old firehouse. Eventually, more buildings were built, and basic needs were met. But students with disabilities were segregated for decades.
It was the same with church. Steve didn't go to Sunday School or worship with us at our Lutheran church. Rather, a Baptist parish in the center of the city provided religious experiences, including Confirmation, for the members of Steve's class. He learned to recite the Lord's Prayer like a pro. And at home, led by our grandma, he said "Now I lay me down to sleep" and sang Jesus Loves Me together with my brothers and me every night. Steve knows and loves God.
For many years, Steve attended Christmas Eve service with my family - husband Mark, children Heather and Ryan, and me. We loved to sing carols together, brother and sister, side by side, Steve crooning in his earnest, honest, low tone.
At the end of the service, lights were lowered, candles passed. Could he be trusted with a lit, drippy candle? Absolutely. As voices rose - "silent night, holy night" - and as wax fell, this gentle guy would stare intently at his glowing, flickering flame. Then he'd wave and say: "Hi, Grandma" (she passed away in 1977), and years later, "Hi, Mom" (our mother passed in 2000). And then I would cry. Always.
Steve absolutely believed that he was communicating with heaven. His faith is sure, his heart pure. In the presence of God, at the birth of the Christ child, in that candle-lit, sacred place, all was calm, all was bright. May we embrace this example of love and faith this holy Advent season.
Karen Holden is the St. Paul Book Corner manager. Her brother, Steve, is a client at the Handicapped Development Center.
