Over the last two months or so, I have discussed how important my family is to me and the enormous impact that each of them has had on shaping my life. I have told you about the sacrifices my mother has made for me, the wisdom and guidance my father gave me, the incredible bond between my brother and I, and how my sister gives me a vicarious look into a world that could have been. As amazing as each member of my family is individually, I think the fact that the 5 of us have always had a close, unbreakable bond despite all of the obstacles that my disability has caused is even more incredible. This strong familial connection we all have is one of the things I am most proud of in my life.
When you consider that well over half of all marriages end in divorce, the fact that any family of 5 has been together for 30 years is impressive. If you then add into that all of the extra mental and emotional stress that comes with having a child with a severe disability, my family sticking together this long is something that borders on miraculous. I have seen so many families with a disabled child fall apart or weaken in different ways. Sometimes the parents blame each other or themselves causing a divorce and dividing the family. Other families operate separately from their disabled child, and they let caregivers take care of them while the rest of the family lives a normal life. Some families stay together, but lose all sense of connection with each other, and they all operate in their own little world because they are unable to deal with the reality facing them. Regardless of how it happens though, most families stricken by disability fall apart, and that is why I feel so proud and fortunate that I have the family life I do.
When I think about my family and how close we are, the first thing that comes to mind is our dinner table. My entire life growing up, unless you had an extra curricular activity or obligation, when it was time for dinner you ate with the family at the table. My parents would put on some educational type music, like “La Boheme” or “Madame Butterfly,” in the background, and we would all sit together and eat. My parents also had a couple of rules for these dinners together. First, everyone had to talk at some point. It didn’t have to be a long monologue, but you had to contribute to the conversation. The other rule was that everyone, including my parents, had to share something they had learned that day. My father would always say that all 5 of us spent 8 hours in a school, so we had to have learned something. If you couldn’t come up with anything, you had to write an essay after dinner, but that never happened. I still can remember some of the great discussions and conversations we had around that kitchen table. These are some of my favorite memories from my childhood even though they were a normal, daily occurrence.
The other major thing that comes to mind when I think about my family is Christmas. My folks, especially my mom, are big Christmas people, and this has rubbed off on us kids over the years. Every year there were tons of presents and such, but even more memorable is the atmosphere my mother would create. Nutcrackers, gingerbread men, and Santa Claus are everywhere, the gentle scent of pine is in the air, and Christmas carols are playing. We would bake Christmas cookies, watch Christmas movies, and play board games for days, as we just enjoyed each other. I always liked how on Christmas morning my parents would make us take turns opening gifts so we could share in each other’s excitement and prolong our enjoyment. To this day, we still do all of this, and it is my hope that we always will.
As close as my family is and the strong connection we have, I am not saying we haven’t had some arguments or rough patches over the years. I have already touched on how strained my relationship with my mom was when I decided to move to Kansas. There was also a time when Stephanie and I barely talked for a while, and there was a long period when my brother and my parents didn’t get along at all. I also went through a time when I felt very guilty about all of the sacrifices my family had made for me, that strained our relationships. No matter how bad these disagreements got or how little we communicated, our core, familial bond never faltered. We were always able to work through our differences because of this strong connection built on love and respect. We have been through so much together, we all know that there is nothing we would not do for each other and nothing can tear us apart.
Before wrapping up, I want to thank my parents for the incredible job they did in keeping our family together, but also for instilling this strong familial connection within my siblings and I. I am so thankful that we have the close, open relationships we have even as we are spread across the country. It is so comforting knowing I can call any of them at any time, and they will listen and help me. I know that I would not have the happy, successful, and independent life that I have if not for my amazing family. I beg you, if you listen to nothing else I ever write on this website, please take the time to tell your family what they mean to you. They are the most important people in your life, and you never know how long you have together so don’t waste it.