Cathy Baggett, Program Services Coordinator for the Tennessee Hemophilia & Bleeding Disorders Foundation, warned me: “You may find it a little overwhelming at first…” and she was right!
Steve, our daughter Kelly, and I were privileged to attend the 2008 National Hemophilia Foundation Annual Meeting in Denver, Colorado. Steve and our two daughters all have Type 2 B Von Willebrand’s Disease. (Our older daughter, Kelly, is an ER nurse at Duke Hospital and was thrilled to go to the conference and did the nurses' track. Our other daughter, bless her heart, said we couldn’t pay her to go… as you may know, you can have two kids with the same bleeding disorder and they’ll react totally different!!!)
I’ve been racking my brain trying to figure out how to describe going to the conference when I heard something that helped me gain perspective.
Then on New Year’s Eve, I met a young man who had a newborn son diagnosed with Downs Syndrome. He told me about a piece he had read by Emily Perl Kingsley that helped him to deal with some of the emotions he was feeling.
I easily found the article on the Internet and thought it was so inspiring. Here’s the piece I found…
WELCOME TO HOLLAND
c1987 by Emily Perl Kingsley. All rights reserved.
I am often asked to describe the experience of raising a child with a disability—to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
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 Michelangelo 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 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 guide books. 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… and you begin to notice that Holland has windmills… and 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, ever go away… because the loss of that dream is a very, 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.
This analogy so touched my heart. I remember being in the delivery room with Kelly (27 years ago!) and hearing the news that she was having bleeding issues and I knew exactly why, since her dad had VWD. That day I entered a new world of mothering children with a bleeding disorder… and I too, had to learn a different language spoken in the bleeding disorders universe.
I will never know what it is like to have a child who doesn’t have a bleeding disorder, and obviously, I wouldn’t trade my girls for anything in the world. But for me, going to the national conference was like going to a place where suddenly, everyone spoke the same language as me! It was such a great feeling and one I had longed for when my girls were little.
It was particularly profound for me because I was late getting to the conference because my younger daughter had had a bleed the day I was supposed to leave to go to Denver. She'd had pretty major surgery and overall, with factor, did amazingly well, but still, we had an unexpected bleed and I went to the conference pretty drained.
So I was comforted and encouraged by seeing and talking with so many women: patients (I’m not sure if there’s a better word!), moms, and doctors alike.
I attended mostly women’s sessions and it was gratifying to see how far things have come for women with bleeding issues, whether they are carriers or women with bleeding disorders themselves.
The person who was a bit out of place was my husband, who, as a male, has VWD, which these days seems mostly focused on women's issues. But he, too, was so grateful for the information we were getting for our daughters and their needs, both present and future.
If you’ve ever traveled to a foreign country where they speak a different language and run into someone who speaks English, you know there is an instant camaraderie. Even if they are from England or Australia, you are able connect in a way that is comforting because you can communicate with someone who understands exactly what you are saying.
And although the research and lobbying efforts reported by the National Hemophilia Foundation were good to hear and understand, the real comfort was to look out and see thousands of people who were able to communicate with each other and support each other just by being together and speaking the same language.
So whether it is at a national conference or a local event, being with folks who understand my world and can communicate with each other is an incredible gift. It is a gift I was grateful to receive and one that I want to happily give to others.
(For more info about Von Willebrand's desease go to All About Bleeding.)