Sunday, July 5, 2009

Welcome to Holland

As many of you know, I manage the Myotonic Dystrophy Foundation, a patient advocacy group focused on education, advocacy and research for myotonic dystrophy. I was recently invited to speak at a medical conference in Holland, in a small town called Naarden not far from Amsterdam. Just before I left for my trip I received a call from my brother saying that he had just returned from a romantic trip to Italy with his wife Dawn. I had to laugh because there is a famous poem by Emily Perl Kingsley that talks about the experience of having a child with a disability and in the poem it talks about how your lifelong trip to Italy gets re-routed to Holland. This poem was passed on to me by another mom who has a child with congenital myotonic dystrophy when I was in the hospital with Kayla. I remember the impact this poem had on me around Kayla's birth and still has on me to this day. When people ask me what it's like to have a child with a disability, I usually just send them a copy of this poem. I wanted to share it with you.

"Welcome to Holland” by Emily Perl Kingsley c1987

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans... the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It's all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland!" "Holland?" you say. "What do you mean, Holland? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. 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. And 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 for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And 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 experience will never, ever, ever, go away. 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.

I have to say that both my trips to Holland (one virtually and the other one that was real) were both life changing. Even though we've been through so much with Kayla I wouldn't give up my "trip to Holland" for anything in the world. I love my daughter more than anything. My second "real" trip to Holland made me realize how many talented, brilliant minds are focusing on this disease. I met with many passionate researchers who are working hard to try and make a difference. I left the meeting feeling more hopeful than ever that treatments for myotonic dystrophy will be found in the next 5-10 years. Thank you to the medical and scientific community focusing on finding cures or treatments for this disease. We are grateful to you!

On another note, we are having a nice 4th of July weekend and had a fun day yesterday BBQing by our pool with good friends. We had at least 30 people here so I'm a little exhausted from cooking all day but we had a blast. I had a special treat; an old girlfriend of mine stopped by with her new baby and she brought lots of her nieces and nephews along. My friend and former college teammate, Ruthie Bolton, is incredibly talented and is not only a professional basketball player (who played for the Sacramento Monarchs) but is also a two time gold medalist in basketball. Well, besides her athletic skills, she also is a talented singer. In fact, she is one of 20 kids and most of her siblings can sing too. Signing is definitely in the Bolton genes. Well, we were blessed to have Ruthie and her family sing the most beautiful version of "Happy Birthday" to Kayla that I've ever heard. They also sang "Amazing Grace" which was also incredible and of course, made me cry. Moments like that make me realize how important it is to stay connected to friends and continue to live life as we did before the diagnosis of myotonic dystrophy in our family. THANKS RUTHIE for making Kayla's birthday so special!

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