Wednesday, March 26, 2014

Dying Is Not An Option


Parenting is not an easy job, but it is perhaps the most rewarding of any job out there. We teach our children right from wrong, feed them, nurture them, and prepare them for their own journey through life. Above all else, we love them unconditionally. We love them with every fiber of our being. They become the driving force behind all that we do.

Parents of children with special needs have a few extra responsibilities. They are immersed in numerous therapy sessions, have a never-ending schedule of meetings with schools, doctors and therapists, and they may have to work a bit harder when teaching children basic life skills. For me, while these things are all part of my daily life, worrying has also become a huge part of my life as a parent. All parents worry. We worry about our children and their development, their manners, their overall behavior. We worry about them making friends, doing homework, and getting into a good college. One of our greatest concerns is their safety. Every parent worries about this. We want to guide our kids through life and ensure their safety and well-being as long as we possibly can. This is a normal desire of a parent.

In this world, there is a natural order . Children typically grow and watch their parents grow old and eventually pass on. There are certainly unfortunate incidences when this order changes, and a parent may lose a child. This is every parents' nightmare, something no one wants to happen. It can only be described as an unimaginable heartbreak,one from which many parents never recover.

As a parent of a child with special needs, I worry about all of the above and then some. One of my greatest fears is that when I pass away, my son will not be cared for properly. I will no longer be there to make everything okay. I will not be able to oversee his daily life, help when needed, organize necessary things. I think of this often, and think of how he will feel and miss my husband and I when we are no longer here. Will he understand why we are not with him? When I find my self thinking about this, I think of the alternative. Will I possibly be able to live long enough to see my son live his life and pass on? To make sure that I am available to him throughout his entire life and see that he is taken care of properly and eventually laid to rest in the most beautiful way? Could I ever even endure such a thing? How would I ever be able to part with him and lose my child? I don't know that I could ever possibly endure that kind of pain, and so I try to push these thoughts out of my mind.If I don't,I find myself in tears. Yet, they are real worries, and eventually one of them will become a reality.

If I had to choose, of course, I would choose to pass first. However, as I see it, it is a lose- lose situation. So, we prepare as best we can to ensure that he will have all that he needs when we are no longer here. We prepare so that he will be provided for, and have a happy place and family to live with. Yet in the back of our minds, we wonder if anyone else will ever have the patience and love for our son that we do, and then the constant worry creeps back in. It is a non-stop, nagging worry that is wrapped in heartache no matter how you look at it. My son is fortunate. He has three brothers who love him. They will help ensure that he lives a great life. Yet, they will have lives and families of their own. It is a very complicated situation, and one that requires much thought and planning. I sometimes find myself wondering why a parent would be faced with such a predicament? Yet, my wondering provides no answers, only more questions.

It would seem that dying ,while inevitable, is not an option for the special needs parent,but of course, that is not a realistic notion. We will eventually have to leave all of our children, and after losing my own parents, that thought frightens me to no end. So what can we do? We have to look to the future, ask questions,and make plans. I also pray....it does not matter what or who you believe in, as long as you believe in something that gives you the strength to deal with these realities and make the proper decisions for your child. Sometimes faith is all we have, and it helps sustain us when we are faced with trials in our lives. I continue to have faith and hope that we are fortunate enough to be here for a very long time, because for now,death is not an option.

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