Kudos to Billie at micropreemietwins.blogspot.com for her insightful and persuasively written take on Emily Perl Kingsley’s much-quoted essay, “Welcome to Holland.”

Writing in 1987, Kingsley said the experience of parenting a child with a disability is like planning a vacation in Italy and ending up in Holland instead. It’s different than what you imagined, but lovely just the same.

Billie, who identifies herself as a 31-year-old school psychologist from Michigan and the mother of twins with cerebral palsy, says she and her family didn’t wind up in Holland. For them, it’s more like the wilderness.

There is so much hard work that goes into having a child with cerebral palsy. It takes strength on many levels, emotionally, spiritually, and especially physically … [and] there is so much more. There is a constant fight for resources. A never ending quest for information. Nothing is ever easy. There are IEPs with dissenting reports, bills that come in the mail that require hours on the phone, struggles with getting equipment covered by the medical insurance, keeping track of therapy, appointments, and recommendations. It never ends.

… We have to rough it. We have to find our own food and shelter. We never know when we’ll end up having to cross another river, or climb another mountain, or when another severe life-threatening storm might blow in.

People come to visit us in the wilderness, and they think they could never live like we do. But if you hang around long enough, you may learn what we have learned. In many, many ways the wilderness is even more beautiful than Holland or Italy. When you have to work so hard for what you have, you appreciate it that much more…

We can appreciate the calm after a storm, even knowing another storm may be brewing.

Many thanks to Nancy Iannone for passing this along!

This entry was posted on Sunday, January 27th, 2008 at 8:41 am and is filed under NOT2BEMISSED, cerebral palsy, families, first-person, parents. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.  Email This Post