Summer 2009 Newsletter

CARES Foundation, Inc.

Welcome to Holland

By Louise Fleming

As the parent of a child with CAH, I am amazed at how I got here. As I am sure many of you are as well. There is a poem that I know a great deal of you have heard called “Welcome to Holland” by Emily Perl Kingsley. It tries to put into perspective what it is like to raise a child that has certain disabilities or health struggles. It is often used by the Down Syndrome Foundation. For those of you who have never heard it, it tells a story of a parent who was told they are going to Italy, but actually ends up on a plane headed for Holland. The parent’s reaction when they land in Holland is one of shock, grief, and disappointment. Why didn’t we get to go to Italy the parent asks? Why? Of course, Italy is symbolizing parenting a child free from life threatening conditions, constant doctor appointments, and life-long health struggles while Holland represents parenting a child who has all of these difficult issues to deal with.

My favorite part of the poem is this paragraph that discusses what a parent must do when they land in Holland: “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 have never met.”

I first read this poem just weeks after my 3rd child, Joey, was diagnosed with Congenital Adrenal Hyperplasia or CAH. I was that parent who had just landed in Holland and could not believe this plane had headed this direction as opposed to beautiful Italy. Now, after the countless lab draws, ER visits, surgeries, and worries……I have a new understanding of my Holland. I have honestly met the most amazing families who have children with CAH. I have laughed with them, cried with them, worried with them, and realized that I am in this new land with some phenomenal people! I have been able to get my Masters degree at Duke University this past May, concentrating all my research efforts on CAH, which gave me career direction I would have never otherwise had. I have a new level of empathy and understanding when looking at children who are different, as do my husband, and all three of my children. I have also met incredible doctors who are devoting enormous amounts of research time and efforts with this disorder as well as others, fighting for our children alongside us. I have joined the Board of Trustees at CARES Foundation, a non profit organization dedicated to supporting families affected by CAH. I now am a faculty member in the School of Nursing at UNC in Chapel Hill and am able to give my nursing students a perspective on how to deal with families of chronically ill patients in a way I would not have been able to accomplish six years ago.

So now, after five years in Holland, I am able to appreciate the tulips and the windmills instead of pining away for Italy. I know now that I have learned more in Holland than I ever would have in Italy, including the fact that both countries are beautiful and should be appreciated for all they have to offer. And in conclusion, after five years in Holland, it is my turn to be the welcome wagon for those who are arriving after me. To be there on the runway as they stumble off the plane, offer them a hug and a smile, and say “Welcome to Holland. I will show you around.”

Go to www.our-kids.org/Archives/Holland.html to read the entire poem.