My name is Heather. I’m the mother to 3 beautiful kids. My youngest is the most challenging. I love life. My life changed majorly. But my love and devotion to all 3 was challenging at times but the most rewarding. To have doctors tell me they never thought he would live to age one and/or even age two and then be told I kept him alive… Well it really does feel good. It was the hardest job I have ever had! Those two years were such a blur. But something that makes me feel good about myself inside. I really don’t have much else that makes me feel good about myself because of being ripped to shreds in every other way possible. I don’t go back and read my posts unless I have to… Reliving the past that is the past is quite frankly too painful. So I look forward with hope. I look forward to the future that has a wonderful hope for my family. I love God. I love nature. I love to sing and dance mostly to country music. I love the wilderness. I love mountains. I love moose, wolves, bears, otters….. Some day I want to go to Glacier National Park, Alaska, Kodiak Island, British Columbia Canada….
So many want to know more about him and what he lives with and how we deal with the day-to-day life things with him. I don’t like to tell his story over and over so I thought this would help. He is DeafBlind and has CHARGE Syndrome. This does not define him. This is what he deals with. We are constantly being educated by each challenge we are presented with. He lives, laughs and loves despite the challenges that come with CHARGE Syndrome and being DeafBlind and in pain many times. He’s a beautiful boy. I wish you all could meet him. I wish you all could have this experience of making this little guy happy and witness his giggles, infectious belly laughs, silly sounds. You can’t help but be drawn in by him. He pulls at your heart-strings like you would never believe… At least that is some of what I’m told… But I would have to agree.
You can visit his site at www.ourbrotherkodiak.com to learn more as well. However, this book is written but publishers don’t want to publish my book as is. It’s beautiful, written from the eyes of his siblings based on how they would tell the story about their baby brother. Comments I kept logged. My dear friend a professional photographer took the photos. So some day someone will see it for what it is… Raw, truthful, informative and educational to people of all ages….
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