As a mom of a son with CHARGE Syndrome, I feel a special kinship to others who are like me. I have yet to actually meet any of the other parents in person, although it won't be long....but, I still feel a special affection for these special people; the kids with CHARGE and their families. We are brought together not by family ties, but by the similar medical experiences and situations. We understand the challenges each other have faced and continue to face on a daily basis. The fear, the heartache....dealing with doctor's appointment, endless procedures....and dare I mention the 'looks'. We look to each other for encouragement, love and support.
Tonight as I write this, my heart aches for Paul and Noel Gilman and their family. Today, they lost their son, Alex, who was nine years old. It's hard to understand and accept the loss of a child. I have read so many beautiful words on Noel's facebook page. There is no doubt in my mind that Alex's short life touched more people than we will ever know. So many times since Matthew was born, Mike and I have faced losing him.....there were so many close calls.....reading Noel's posts have touched me and brought back so many memories. I am honored that I was given the chance to see the love that this family shared.
Life is a precious gift.
"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love." Washington Irving
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