14 March 1999
6:49 AM EST
Megan made it back home on Friday 12 March!!
When I was at the house on Saturday, "Miss Megan" was proudly prancing around the house in her jammies, wearing her "Rug-Rat" slippers and talking up a storm. She enticed her mom and sister into a few games of Twister and it was purely hilarious to see Nancy and her 2 daughters in all sorts of contortions as they had arms and legs outstretched on the colored circles on the mat. Just 2 days ago, Megan had been hooked up to all sorts of monitors while propped up in her hospital bed, and here she was giggling, laughing and playing at home.
These brief moments of pure family joy are shadowed by the ever present medical realities of Meganís illness. When you enter Meganís house, someone runs up with a spray bottle of alcohol to "disinfect" you. And, however much you may see the kids running around the house laughing and playing, when you open the refrigerator you are met with a vast array of medications, drugs and syringes necessary to maintain Meganís life. The dining room table is stacked with medical bills, reports, and analytical information, all which must be dealt with on a daily basis to make sure that Meganís status is managed properly.
Many of us probably take "being at home" for granted. I can tell you that Meganís family acts like "being at home" is cause for major celebration. What was once something "typical" is now a "miracle". One can only pray that this miracle continues.
Throughout all of this, many things have changed, some have remained the same. A year ago, Megan would never talk to me. Now, she has long conversations with me. I think she even liked my rendition of "The Three Little Bears" which (in my fractured version) interposed "Little Red Riding Hood", "The Three Little Pigs", "Goldilocks", "Mother Goose", "Hansel and Gretel", "The Wizard of Oz", and "Alice in Wonderland".
When we all sat down for lunch, Megan made the same request for what she wanted that she always has for as long as Iíve known her,.....grilled cheese. Before she became sick, this is what she always wanted, and even now itís still one of her favorites. Itís nice to know that some of the basic things have been able to remain the same. I hope that "Miss Megan" is always able to have her favorite things in life despite the drastic changes which have already altered her life forever.
As we all move forward, I encourage you to attend one of the scheduled fundraising events. You might have the opportunity to meet someone from Meganís family. But more importantly, I think you will be enriched by meeting all of the other people present. You see, because of Megan, we have all been joined into a kind of universal family. If at first you donít know anyone, I guarantee you that everyone will treat you like a long-lost friend, like part of the family. Life is too short to ignore the miracle of Megan. Stop long enough to "smell the roses", but most important of all, stop long enough to learn that Meganís candle now serves as a guiding light for all of us.On behalf of Megan and her family (re-united and "at home"),
A Community Service of: