Jenni Newbury is a new friend of mine. She wrote a guest post a while ago about her younger brother Jason, who has Down syndrome, and she recently sent me the text of her keynote address from this year's National Down Syndrome Congress Convention. As she relates, if you are a sibling of someone with Down syndrome, there is no memorable "before" and "after." There is no conversion story to report. Living with a family member with Down syndrome has always been her experience, and it is from this experience that she spoke. Jenni talks about Jason's trust, love, and courage, and she demonstrates her own in these words:
Growing Up In Holland: A Sibling's Report from the Front Lines
"When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy...After months of eager anticipation, the plane lands and the stewardess comes in and says "Welcome to Holland." Holland? You say. But I thought I was going to Italy, all my life I've dreamt of going to Italy"
Over the past 23 years, I've heard Emily Perl Kingsley's poem "Welcome to Holland" at conferences, trainings, and many other events involving individuals with disabilities. Emily tells us that, although less flashy than Italy, Holland still has beautiful characteristics and the traveler learns to appreciate them even while watching others come and go from Italy . . .
But what about growing up in Holland?
What about those who were born in Holland or simply were so young when they arrived that they can't remember anything different? Do they appreciate the eccentricity of Holland without missing the glamour of Italy? Do they stay up late at night wondering what it would be like in Italy or are they simply more comfortable, more at home, in Holland? This perspective, and these questions, can only be understood by siblings – shedding light on the distinct connection between those of us who share a similar history, who find ourselves rooted in the particular place of Holland . . .
There are countless lessons that I learned from Jason over the years, many of which have continued to challenge me as we transition into our adult lives. But a few key themes come to mind when I think about our childhood.
The first is trust. From a very young age, Jason showed me what it was like to trust someone. Jason trusted me with his heart, his happiness, his life – I'm not sure what I ever did to deserve it – but all I knew is that I didn't want to do anything to lose it. Jason trusted me when I would take him in the pool before he could swim and Jason trusted me when I took him across the country on our very first trip to the NDSC without our parents. But most of all, Jason and I trusted our relationship – the type of relationship where we knew that we could share our deepest secrets and not be judged but accepted. To this day, it is Jason's trust that continues to motivate me – he trusts me to keep my promises, to fight for the right causes, and to come home to visit (or take him with me) as much as possible – and so I do.
The second lesson I learned from Jason is about love – and there are a few elements of this specific lesson. First of all, Jason taught me about loving life. There is no one I have ever met who can love life like Jason. Jason is the friend who will stand up and sing karaoke when everyone else is ready to go home, and Jason is the guy that will sweep you off your feet when you thought you were the only one in the room who heard the music. I imagine it is this love for life that fuels Jason's ability to unconditionally love others. Many of us talk about love and we demonstrate it often. We love when it is convenient – we love others when they are interesting, when they are beautiful or they make us laugh; we love others when they are useful to us; we love others when they love us in return. But not Jason. Jason demonstrates great love to his family and those close to him, but he demonstrates even greater love to everyone else. Jason holds no grudge, he forgives without bringing guilt and he has shown grace when anyone else would fight back, or fall apart.
It's difficult to grow up in Holland without learning about hardship, and with that, perseverance. This brings me to my third lesson, and at Jason's request, I am calling this courage. This was the first theme that came up in our conversation when I spoke to Jason about this keynote address. He talked about the summer that I spent teaching him how to ride a bike. It wasn't just perseverance that made him continue to get back on but – knowing he was likely to fall again – it took great courage. And the more I thought about it, the more I agreed. It took great courage for Jason to take the bus every day to school, even though he was teased and bullied. It took great courage for Jason to yell at the people behind us when I stalled the car on a hill the very first day I got my driver's license. And it took great courage for Jason to return to high school after realizing that walking with his class at graduation did not mean that he would receive a diploma like all of his peers. You see, perseverance is important when you're working towards a goal but when you spend enough time facing disappointments, courage is what will keep you going.
And so growing up with Jason, I learned about trust, about love, and about courage. And as these lessons were being taught, Jason and I quickly learned that not everyone lived in Holland, and not everyone appreciated Jason for the lessons he had to teach. And so, as we grew up, we learned the value – and security- found in those who shared our same roots . . .
To watch a video of Jenni's whole speech, go to the CampPALS blog.
