Holland or Not

Some of you may be familiar with Emily Pearl Kingsley's "Welcome to Holland" piece (if not, I suggest you click on the link and read it). It is a very sweet piece and something which I find comforting to read when feeling a bit overwhelmed with Malcolm's Ds status. At the same time, I have always been vaguely unsettled that although it seems like a nice mindset and metaphor, I have never really felt like being the parent of a child with Ds is like travelling to the wrong western European country - it seems a bit too trivial, a bit too relaxed. I recently came across an article by Michael Berube, father to a son with Down syndrome and author of the book "Life as We Know It: A Father, a Family and an Exceptional Child". I can't reproduce the entire article, but I identify pretty well with the following:

"Jamie has Down's Syndrome and will have Down's Syndrome all his life, but on most days, for most purposes, all that means to his mother Janet and to me is that he's sometimes hard to handle, sometimes impervious to danger, always impervious to the benefits of fruits and vegetables, always willful...I like to think we were asking for a story more adequate to the grainy details of our lives, a story that acknowledged all the ordinary and extraordinary difficulties of parenting a child with Down's Syndrome. It's not simply a matter of exchanging Rome for Amsterdam, resetting your sights accordingly, and settling in to have a good time. In fact, it's nothing like a vacation at all. It's more like discovering that you'll be living the rest of your life in a country that may be physically and spiritually gratifying but might also be volatile, unmapped and terrifying."

For those of you who wish to read the full article and have access to academic journals, the abstact and citation is here (it's also indexed on PubMed). Sometimes it is interesting to reflect on how others in a similar situation view the complexities of have a child with Ds.

Mary Ellen