Worry. Everyone worries about something. Some things are big, others small. People worry about the same things. Money. Health. Family. You get the point. We worry about what people think of us. If our kids are happy. Are they healthy? Are they kind? Am I kind? Worry eats at you. Especially if you let everything that worries you, eat at you.
I worry about J. I worry if he will ever be able to talk. I worry that he will live with us forever. I worry about what will happen to him when we die. I worry that he will never be independent. I worry that he will not find his place in this crazy life that we live. I worry that I’m not doing enough for him. That I’m not pushing him to meet his full potential. I worry about him all the time.
I worry about A. I worry that fragile x will begin to impede her. I worry that she will have trouble in school. I worry that she will be bullied for her quirks. I worry that she will become lost in the shuffle. I worry that she will feel left out. I worry that things will become more difficult for her. That she will not be able to keep up. I worry that she will feel different. I worry that I am not doing a good job for her. I worry that I treat her different. That I make a big deal of her differences. I worry that she will never marry. That she will never have children. I worry that she may have a hard time with independence. That she will struggle unnecessarily. I worry that I’m not doing enough for her.
I worry about E. I worry that CF will catch up to her. I worry that the disease is progressive. That she can escape it forever. I worry that she will be sick. That she will not be able to enjoy life as fully. I worry that I will not be able to do everything for her. I worry that I don’t bubble her enough. I worry that I don’t let her be a kid enough. I worry that I will miss something. I worry about potential hospital stays. What will I do with my other kids?
I worry about money. I worry about whether we will be able to provide long term for our kids who will need it. I worry about which of the kids will need it. Will it be all of them? I worry about health. I worry about whether I’m enough. That I do enough. I worry that I’m spreading myself thin trying to do everything. Be everything. I worry that I will never time to myself again. I worry that I’m selfish for thinking that. I worry that I’m failing as a mom, wife and person. I worry. A lot.
I’m taking today. I’m taking the last day of 2017 to worry about everything and when I wake up tomorrow it will be 2018. A new year. Full of new challenges. Ups and downs. Choices, good or bad. I know I will worry because that’s what we do as humans. But I will not worry every day. I will enjoy each day. Some days will be better than others. But it’s a new year full of new possibilities. There is so much research into cf and fragile x. New trials and drugs coming down the pipeline. Things that will help my kids have an easier time of it. Maybe even a cure. Who knows? The possibilities are endless, just like they are endless for my kids. I’m going to keep pushing them to be the best they can be. I will keep adding therapy where needed. Doctors appointments when necessary. Always moving forward. In the end I will be stronger and enough for them. I am their voice when they don’t have one.
I’m ok with this. We’re only given as much as we can handle when we accept the journey given to us. I choose to make the best of it and work as hard as it is necessary.