“Having two brothers with Down syndrome is far from disabling. They have shown me how to live big, laugh big and love big.
My parents had my first brother, Scotty, when they were just 20 and 21. Having a child with Down syndrome almost 40 years ago was foreign territory. They were both asked if they would like to institutionalize him or they could take him home and bring him back at 5 to be institutionalized. My parents couldn’t fathom going home without their first baby, even if he was different. Being both young and naive allowed them to take on the unknown gracefully. A year later they would have my sister, Jill. And then 6 years later they would have me.
I didn’t fully understand at a young age what made my brother different. It didn’t become noticeable until I was 8 or 9 when people would stare or make comments at my basketball practice and kids would inquire – ‘Why does your brother look like that?’ Or, ‘Why is your brother so retarded?’ It was around this time that I wasn’t comfortable in my own skin and at times I would ask my parents to keep my brother at home, because the teasing was unbearable. But as I grew up and realized my brother was full of kindness and joy, even though he was different. I became more confident and compassionate towards those who did not understand.
When I was 14, my parents would surprisingly have another child who would have Down syndrome. He would be my younger brother, Jordan. My mother went through a year of emotional breakdown because she felt humiliated, and struggled to accept that she would be burdening my sister and I with the responsibility for taking care of our brothers later on in life.
Although it was a surprise that we would now have two boys in our family with Down syndrome, overall we were very happy to welcome Jordan into our home. We knew all the joy Scotty had brought to our family with his peaceful, quiet presence.
My parents would bring my brothers to all of my soccer and basketball games and students in my high school were incredibly gracious. The teasing stopped because I learned to embrace their differences and others would follow suit. The compassion that would follow from others was life saving. As they would struggle to walk up the stands people would immediately come to help. As they would struggle to sit quietly in a populated space people would tell us how wonderful it is to have them around. As they would struggle to make conversation people would smile even bigger and enjoy their unique presence.
I would also watch my older brother’s friends in high school. They all had unique special needs and quickly taught me greater humility. I would take them to the movies, which was always a real treat — especially when one friend took her shirt off when she saw Tom Cruise on the screen and went running up and down the aisle. Or when I took them to Wal-Mart and one took all the candy off the aisle, stacked the cart full, and started screaming and dancing.
My brothers teach us more than we teach them.
They teach you humility in the most beautiful, endearing ways. They teach you to accept your weaknesses. They teach you to be enthusiastic about the little things – such as candy, music or hugs. They teach you to embrace who you are. They teach you how to ask for help. They teach you the love that exists in strangers. They teach you compassion for those who misunderstand.
Jordan recently graduated from high school and is furthering his education in vocational school. And Scotty works a few times a week, but his greatest pleasure is conversing with my Dad daily about sports.
They are both uncles of 10 children. I have 6 children of my own (9, 8, 6, 4, 3, 18 months) and my sister also has 4 children (20, 19, 17, 14). My brothers are now teaching my children compassion and what it means to be different.
I will leave you with this poem that resonates with my family…
“Welcome To Holland”
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
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