I have spent a bit of time lately trying to sort my feelings and reevaluate my goals, dreams, and daily strategy for life. Fun, huh? I recognized that I was going through the stages of grief and mourning. Mourning many losses I have had and mourning the losses of dreams and hopes that I finally realized were not on the path I am currently in my life.
Some of my losses come from being a single parent (that was not in my plans) while many come as a result of being the parent of a special needs child. One child that will always need to be cared for. He definitely makes life a bit more challenging. That does not mean I do not love him, or that I wish things were different. I get the challenge of learning many things from caring for him to watching him progress in life. I get the challenge of solving problems on a daily basis.
Things are not always sunshine and roses. It is tiring. It hard. It is worth it.
In reevaluating my strategy for daily life I realized that I have spent the better part of the last few years pushing against a mountain that refuses to move. I realized that I needed to stop being stubborn and to allow myself permission to stop pushing that mountain and accept the detour around it. Accepting this new path does not mean I will put aside all things me, but I won’t try so hard for the things that really aren’t meant to be at this time in my life.
As a result of this mourning for losses, which include certain life things for my son as well, I began to feel very down. Maybe falling down is what helps one to slow down so they can notice the right way to go.
During all this going on in my mind someone asked me why I do not ask for help with my son. It took me a bit to figure that answer out: it has become a way of life. I just do it. It is my normal. My family’s normal. I do not know another way. In addition to that, most people are scared to help. There have often been times when people have seemed put out by helping. So I stop asking….and then there are the many times that if I have expressed that I may need help or things may be hard people automatically mention how I need to consider putting him in a home. It isn’t as if I haven’t thought about his long term needs and care. I think about it often, actually. I hope it never comes to that because that would be the wrong choice for him. I know it is a good choice for many, but not for him. However, since it seems to be common that people suggest it I stop letting on that it might be hard or that I may need help. Life is hard no matter what- it does not mean I want to get rid of my son.
I know people mean well. I know they are often trying to help. I know that many people cannot comprehend what life is really like with a special needs child, especially one with severe needs. I have spent the last several years taking care of all my son’s needs, keeping him alive, and preparing my mind for what is in the future-even mourning the loss of him growing up to have a family of his own.
After continued thought I began to understood even more of what I have been feeling. What really is the hard part of being a parent of a special needs child? I think for me it is the weight. I carry it all on my own. I worry about doing a good job. I worry about not doing enough. I know that he may not live a full life. I also know he could live long and my life cut short. I worry that every time he has a seizure something could go wrong. There are so many more things that are all internal that weigh in me more than the physical aspect of taking care of him.
The physical things are weighing for sure, but those seem easier than the others. There are multiple diaper changes a day, the extra messes, the special diet, the communication issues, the getting drenched when trying to give him a shower or bath, and so forth. But it isn’t necessarily physical help that is needed from others. It is support. Just emotional support-more than anything.
With all that said, I would be negligent to make it appear life is without joy or happiness as the parent of a special needs child. It is full of challenges that bring about growth in character. My son is always happy, and happiness is often contagious. I have also learned how to find joy in the simple things and to not take so many things for granted. Things like walking, eating, playing, and breathing. The joy brought from these simple things being accomplished is amazing! I get to experience sharp memories full of extra joyful moments that I never thought would happen.
For instance, I don’t recall the first time my other children walked. I know I was very excited to see them walk, but that exact memory is foggy at best the memory of my son walking for the first time is as fresh in my memory as it was years ago when he was six and stood up in the middle of a floor and began walking. I was in the middle of a conversation with a relative at a Christmas party. I stopped talking and just stared with my mouth wide open in amazement. Yes, life may be difficult as the parent of a special needs child, but those good moments are forever stuck in the mind.
Then there are the every day moments that bring a smile or laugh. Such as when he lets me know he wants to be tickled, or he puts his legs over my lap when he sits next to me.
No matter the struggles any one of us have in life there is always something to be found to bring some joy. It is there.