Friday, Sept. 24, 2004 | 8:59 a.m.

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A speech I wrote for Jeff to give on my behalf tomorrow at the CF Walk in Bloomington:

I am really sorry I couldn’t be here today, to read this myself and thank this part of our community personally. When I had the opportunity to thank Jasmine’s medical staff, they shared with us that one thing that made all the heartache worthwhile was hearing about how their work affected the families. When I started thinking about this event, I wondered if the volunteers and the walkers ever wonder if the work they do is appreciated and worthwhile. Let me share my perspective. The work done by the volunteers and walkers for the CF Foundation is hard to measure – it’s not just about the dollars raised. It’s also about the energy put in, the caring and the determination to stop this disease that makes many lives too short.

The work you all do, the donations you collect, the positive energy and prayers you send out towards this cause, they matter. They matter to me, and they matter to every person living with cystic fibrosis. A community of support is created by those who do this work and that is at least as important as the money collected for research. So thank you, not just for walking and raising money, but thank you for caring and for stepping up to do this work and create this community. Thank you for being there to celebrate with us in 2003 when things were going so well, and thank you for being there to mourn with us in February when Jasmine died.

Our then-nine-year-old daughter Jasmine had a lung transplant in March of 2003. In December of that same year, she contracted an infection in those lungs that her body simply couldn’t fight off. When she died at ten, many people repeated the mantra we’ve heard ever since Jasmine was diagnosed, “I don’t know how you do it. I couldn’t handle it.” Most of the time, I disagree because it implies I had a choice in the matter. Parents and caretakers of CF-ers do it because they don’t have a choice. They handle it because they have to. It’s amazing what you get used to in the course of a lifetime, even one as short as Jasmine’s.

For me, having a child with cystic fibrosis was both challenging and rewarding. Poignant and joyous. Memories of having to wrap my baby in a blanket to keep her struggling body still for needle pokes are mingled with memories of us all laughing as she wore her Thairapy vest for the first time and sounded like she was driving over the bumpiest road in America. The pain of losing her so early is balanced by knowing that the year prior to her death was the best she ever had. She was able to keep up with the other kids. She was able to laugh without coughing. Life is a roller coaster ride for most people, I imagine, but our peaks and troughs (Tobi-related pun intended) were more extreme than most.

So to bring this back to my original point (and to make sure my husband also has room to speak), I hope that one of the reasons you all do this work is to give people like me an opportunity to share a life like Jasmine’s. Of course I feel it ended too soon – “too soon” is a phrase that often echoes through my mind these days – but I am so grateful to medical science for making those years what they were. Would I have liked to have my time with Jasmine unfettered by the trappings of CF? Of course I would. Would I have learned the same lessons from parenting her? Maybe. But the reality is, we had what we had and I am grateful for that too.

In closing, I would like to share a story about having a child with a disability. I’m sure many of you are familiar with it, but it feels appropriate:

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 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.

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Recent Entries ...
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