Stories of Lost Children
I Miss The Squeezy Hugs
by Patti Fraser, Ladysmith, BC, Canada
The last month has been the hardest of my life. April 30, 2002 I gave birth to a healthy baby girl, Oriana Rose, and May 13, 2002 My seven year old boy Reice passed on. Reice was a beautiful child who had been struggling all of his life. Despite those struggles, he had an amazing ability to bring people together in love, and to teach people acceptance. Amazing considering he was unable to use words or sign. Reice was diagnosed with Congenital Rubella Syndrome, and as a result was medically and developmentally compromised. Included in his symptoms were deafblindness, GI Tube feeding, and developmental abilities from age 6 months up. Despite this, he was a fighter who spent every day as happy as possible, trying to make others laugh through jokes or tricks. Last year we had a scare regarding a possible brain tumer, (turned out to be continued calcification and degeneration). As a result I was forced to face the possibility of losing my little boy. Then I came to terms with the fact that Reice did not care about yesterday and did not care about tomorrow, but only cared about today. I made a vow, I would ensure that all of his today's would be happy days, as I did not know how long Reice would be with me. That way if he was with us until tomorrow, or ten years from now, he would pass a happy boy. What more can a parent hope for? I look back now, and I am very glad I chose that path. Today, our lives are very strange. My schedule has gone from medication every two hours, tube feedings every four hours and over 20 diaper changes per day, every day, to ten or twelve breast feedings and about eight diapers per day. We are working on finding a new normal. What is normal anyway? I feel like the last seven year of my life has been a dream, a dream that has been ripped from me whether I like it or not. One child is gone, and I now have another. Reality? What is that? Needless to say, we had both children together for one week. It was the happiest week of my life. Day by day it is getting easier, but the sad times are so very sad. I have to sign off. I hope to hear from others who have experienced this.
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