After learning of Samuel's diagnosis, I began making connections with other parents of children with HPE. One of the first connections I made was with Dan Southworth. Dan lives in Arizona, and his daughter, Kylie, has HPE. Dan and I had several conversations via e-mail, and he was even kind enough to send us a few books of encouragement. One of the books was "The Power of the Powerless" by Christopher de Vinck which was an incredible book for me to read in those first weeks after Sam's diagnosis. At that time, I shared a story with him about snowflakes.
One year later, Dan contacted me to let me know that Kylie had passed away. He told me that he hoped to read my snowflake story at Kylie's funeral. I place those words here as a tribute to Kylie.
1/21/2003
One day late last week, I was driving to work, and I stopped at an intersection and waited as traffic passed so that I could make a right-hand turn on red. It had started snowing, and because I was looking out the driver's window, I had the opportunity to see tiny, perfectly-formed snowflakes landing on the window right in front of me. Usually, falling snow is just a big inconvenience to me, but on that particular day, it was beautiful because I was able to see with new eyes. If it weren't for the person waiting to turn behind me, I could have sat there all day and watched those snowflakes on my window! As I walked through the parking lot and into my office, I kept watching the snowflakes land on my black coat, and I was still able to see the exact shape and beauty in each and every flake. Yet, I knew that as soon as I walked inside each one would quickly disappear into a drop of water. It reminded me that life on this earth is very short, and we're all a mist that appears for a little while and then vanishes. Rather than making my way to the elevator as I normally would, I stopped inside the door, and just watched as each snowflake slowly melted away. Just within the past week or so, I've begun looking at the world around me with an entirely new perspective.
I'm still amazed at how quickly life and my perspective can change. Even if our doctors were to tell us that they made a terrible mistake or if God performs a miracle, I don't regret this experience. In just over a week, I've changed and I've learned so much about myself and about others. I'm valuing life and appreciating the small pleasures that I've overlooked for so long! My plan is to expect the worst but hope for the best; to celebrate every twist and turn; and to find joy in everything around me. |