All weekend I have been thinking about Shiloh’s parents. She recently passed away at the tender age of ten. She was one of only three known worldwide who lived with sirenomelia, commonly referred to as mermaid syndrome. She was a true spirit, full of life and determination. As a parent of a child with a disability, I have learned a few things. Some things in life may seem unfair, but life was never fair. I also had a cousin with severe limitations and when she passed, I grieved over what she had been through in her life, but I was grateful that she was part of our lives, in the sixties; a time before inclusion.
In my experience, I believe most parents who have children with disabilities sometimes experience chronic sorrow because their children will lead dramatically different lives than their peers. It seems much of the child’s energy, is sometimes spent making others comfortable with them. Parents also feel compelled to have their children accepted by their peers as well as adults. There were times, I had to step back and not put those burdens on my shoulders because I needed to save my strength just to be a mom. I also wanted my son to see that I was dealing with things the best way I knew. When parents finally stop fighting the disability and gain acceptance, then the children gain self acceptance, which is most important.
Disabled kids teach their parents just how strong they are as human beings. The strength of the human spirit is remarkable. Inside each and every one of us is that need to live our lives. Sometimes we are not tested early on, like children with illness and disability, until we are older. Then we find that we have great strength when we need it. We will experience denial, fear, anger and sadness but that will take the back burner to acceptance and happiness in the life that we have today. Our children do not want to be made to feel they are a burden, or they are special, or they are fragile. They want people to talk to them not at them. My experience as a mother is not that different from any other mother. I want my children to accept themselves and be the best they can be. My experiences have been intense at times. It was not always easy trying to juggle meeting the needs of my able-bodied son as I was care-giving for my other son. There were times when I had nightmares over my inability to do both. For the most part, I believe I am a better person for having the experiences I have had as a mother. It may be difficult to believe but I would never trade the experience of raising a child with a disability. Of course, in my heart it has been difficult to watch my son experience his losses. It has been difficult for our whole family, especially my youngest son who watched his brother gradually stop walking and lose abilities. They have a very tight bond, which is just what a mother wants with her kids.
When I think of all the people I have met whose children have been sick or living with disability during our many hospital stays and also families I have known with disabled children, I am humbled to be part of this circle of friends. I have several memories of parents who have lost their children and they still reach out to me in my time of need or they are there to offer me their wisdom. So today, as I think of Shiloh’s family, I am sure they feel very blessed to have had such a beautiful daughter and I am willing to bet they too would not have traded their experience as parents to such a determined young girl. This story is dedicated to the strength of the human spirit, the love we have for life, and the courage to carry on with the burdens that we all sometimes carry. To LIfe!
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