It told of a mom that twice a year spends the night at a local hotel for the sole purpose of alone time - to eat alone (and feed only herself) to sleep alone (all through the night) and to take a bubble bath (uninterrupted.)
There was the mom that came to the realization that it is harder to be the child that is struggling with a disability than to be that child's parent. (No matter how hard we as parents think it is to be the parent.)
Or the mom that finally accepted that along the road there will be pain and bullying but that there will also be kindness and victories. She decided that she does not want her kids to be "normal" anymore. She already believes in the extraordinary; and is reminded of it in ways big and small everyday.
It also stated "when you have a special needs child you can be confused, worried, and annoyed all at the same time- and then seconds later, be fine with life." yep.....been there!
Possibly my favorite is a mom that states how much she has learned from her son. He loves without restraint, without strings, without malice. His heart is so innocent and so pure. It is breathtaking. He fills my world with wonder and unbelievable joy or the mom that made the choice to dwell in possibility, not disability.
This book is filled with many heart wrenching stories, many of which I never care to read again. I had to choose to dwell on the many positive messages delivered throughout, words meant to encourage. Words like those of the final paragraph:" I often questioned why God had given me a child with special needs. I later realized He had given me a gift, one that has taught not only me but everyone he has known, lessons in life. Among these many lessons he has taught us patience, tolerance, acceptance, equality and perseverance to overcome obstacles to success. Most of all he has taught us about unconditional love; and that there is a light at the end of the tunnel for all of those willing to find it."
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3 comments:
I'm reading that book right now! Or trying to, I get through about a page each night so it's slow going. My first thought when I started it was that I liked that it made me not feel so alone.
kelly, thanks for sharing that. I have often said, Why me??? I have finally learned that there is a bigger plan. This is not being done to me, but rather I GET to be a part of their lives. My son has taught me alot about patience and understanding. From my daughter I have learned what pure joy another human can bring to my life!
Looks like a good book! I'll have to pick that one up. Another good one I read awhile back was
"Chicken Soup for the Soul: Children with Special Needs: Stories of Love and Understanding for Those Who Care for Children with Disabilities"
And another great one is "Schuyler's Monster: A father's journey with his wordless daughter." Here is there blog: http://www.schuylersmonsterblog.com/ She doesn't have Rett Syndrome, but the journey to diagnosis was very similar: no words at 18 months, poor fine motor skills...It's just a good read about the difficulties that families go to inorder to advacate for their children.
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