‘Life is amazing’

Among the Christmas letters that I received this year, the best was from my friend Anne, a former co-worker for whom 2009 was a roller-coaster year, to say the least.

Anne has a 5-year-old son, Lee, who has been diagnosed with IPEX, a rare genetic condition that pretty much has blown out his autoimmune system. His only chance of long-term survival is a bone-marrow transplant, which he received this June in Cincinnati.

The operation required a months-long stay in Cincinnati for Anne and Lee, away from their Michigan home, and most of that has been spent in a fair amount of isolation because Lee is so vulnerable to infection. Anne’s other child, Katie, a third-grader, has had to live with her grandparents this school year. Six months after the operation, it’s still uncertain whether the operation was a success.  Writes Anne:

People ask me how I have gotten through all of this, and I’m running out of space to convey how this experience has changed my life. First, I haven’t always done it gracefully. There are days I am so tired of being the maid, the cook, the teacher, the nurse, and the best playmate. At other times, grief rolls over me like a towering wave because of all we have gone through and all we have ahead of us. In my more noble moments, I know that we are part of something bigger. I encounter the larger power every time we experience compassion. I know that gratitude is very powerful. I am grateful that I can meet this challenge. My life has purpose because no one is better equipped than I to handle this situation and I wouldn’t choose to be anywhere else right now. I remember that Life (the one with a capital L) goes on no matter how hard I fight and fume and feel sorry for myself. This too shall pass and when it’s all done, I want to look back with awe and wonder that I made the best of it for my kids and me. I know that my hardship has given others the chance to examine their own heartache. It seems as if everyone I talk to lately opens up about their trials past and present. Then they say, “Well, my worries are nothing compared to yours.” I reply that we all have worries (that’s part of life) and I’m glad I can listen if it helps them put their worries to rest.

In the past year, I have felt fear, anguish, despair and grief. But I also have felt the depths of compasion, honesty, love, acceptance, hope and peace that passes understanding. The journalist in me stands back and takes it all in with wonder. Life is amazing.

Anne has her own blog to update people about Lee. It’s at www.meetmysonlee.shutterfly.com.


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