When my second son was born two months early and later diagnosed with Down syndrome, somewhere in the flurry of reading I consumed, I came across the poem “Welcome to Holland” by Emily Perl Kingsley. Ms. Kingsley describes having a child with a disability like going on a trip to Italy but instead you land in Holland. In my state of confusion and numbness the words from Ms. Kingsley helped to give a framework to my feelings and much of my mind racing.
The hardest part for me was thinking about what this new member of our family would mean to my first son, then just three years old. I had a mix of fear and guilt for what my older son may have to deal with and for how his life would be negatively impacted. I knew that my husband and I would handle things; we were adults. But for my young son who had no choice in having a sibling enter his life, how would having a new brother and now a brother with a disability affect him?
Perhaps part of these feelings was the guilt that any parent may go through when they have a second child. The first child’s life was going along just fine – did they really want or need a sibling? Most parents probably justify the new addition by thinking that even though the adjustment is hard at first, that the older child will be better off because the child will now have someone to share life with and, hopefully, have a lifelong friend even after the parents have died. However, when we found out our son has Down syndrome I wondered would he be able to share life with his big brother and be a friend and confidant? What did this mean for our family? I had a bright, curious, beautiful son – clearly in Italy, and now I had a son unexpectedly in Holland. How could I be two moms in two different countries, speaking two different languages?
I ventured into this new place and met some helpful moms and developmental therapists. I did not have answers to many questions but, like Holland, having a child with Down syndrome was turning out to be a welcoming and fine place. Holland is beautiful with remarkable architecture including the Canal district. This land of windmills evokes peace and serenity. Holland is one of the world’s largest producers of flowers. Just the Keukenhof Gardens alone has seven million bulbs planted annually. The amazing museums such as the Anne Frank House are inspiring. Vincent Van Gogh lived in Amsterdam at one point in his life, and the Van Gogh Museum permanent collection has over 200 of his works.
I understood landing in Italy from my experience with my first son. Italy also has some incredible sites. Pompeii, the Pantheon, the Leaning Tower of Pisa, and the island of Sicily all offer history, scenery, and unique styles. No wonder Italy is one of the top five countries visited around the world with over 40 million visitors annually.
Somewhere along the way, however, I realized and, more importantly, I decided that I didn’t have to stay in Holland or in Italy for that matter and I did not have to choose to blindly travel back and forth the 850 miles between the two countries. The rest of the world is pretty incredible too. I am one mother of two sons and we are connected. Like the Mississippi River a few miles from our house, we as a family flow through life together on all of its twists and turns sometimes quickly and sometimes meandering.
I have learned best from watching my two sons together. I see that my greatest worry – for my son having a brother with Down syndrome – has turned into the best gift in life and that his little brother has taught him things I never could. They share an amazing connection that continues to astonish me. I see the understanding, devotion and joy that they have most strongly for each other. They have showed me we speak the same language of love and that we will not be kept in separate places.
I have wondered why I feel differently than Ms. Kingsley and I believe it is because of her. Since she and many other parents worked for better opportunities for their child with a disability, there is more inclusion and acceptance. Her work and words had a positive influence on so many people.
Through time and travel, I am learning on this journey and I look forward with excitement and anticipation to where it leads instead of feeling like it is already defined by a diagnosis. In addition to Italy and Holland, I look forward to traveling to Shanghai, the Amazon rainforest, Paris, the Serengeti, and much more.
© 2013 by Deborah Leigh Norman. All rights reserved.