Wednesday, August 13, 2014

Learning to Live in Holland

Yesterday, I was doing some online research and stumbled across this poem, which provides an analogy about what it is like raising a child with developmental delays.  This mom so clearly explains the roller coaster of emotions that I have felt ever since the day that we were told that Bex had an abnormality with the white matter in her brain.

Welcome to Holland, by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It’s like this: When you are going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo’s “David.” The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes and says, “Welcome to Holland.” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plans. They’ve landed in Holland, and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there awhile and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

As Chris posted in his blog post last night, Bex had a great week last week. We had one of the best weekends with her last weekend that we have had in a long time. We were so happy to have our baby girl back and also so proud of all the accomplishments she was making. Last week was one of the first times in awhile that I can honestly say most of my days were spent embracing and loving "Holland" without thinking too much about "Italy" or feeling sad about how differently things have turned out from what we were planning a year ago. 

Appointments like yesterday will never get easier. They are the slap in the face reminder that life in "Holland" can be tough. Words like "diminished potential" will always make my heart ache, but like that poem states if we spend our time mourning or thinking about how things could be different, we will miss out on all the wonderful things about life with Bexley.  While the doctor yesterday can say she has "diminished potential", he only spent less than a half hour with her and most of that time he was more focused on the images of her brain and his computer than her. I have spent every day with that little girl for the past nine months....and she is one tough, determined little girl. She has a smile and giggle that can turn even the hardest days around. She is incredibly loveable and lives for kisses, hugs, and cuddling. In my eyes, those are all qualities that mean she has the unlimited potential to do great things as well as inspire and bring a lot of joy and happiness to all the people in her life. 

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