No matter what you are dealing with in your life, money issues, or health problems, etc… For those of you who had young children at the time you started on your series of unfortunate events (any Lemony Snicket fans out there), they probably provided you with all the reason you needed to fight the good fight. Even if, like me, you had young children when you were diagnosed, you need to continue to find that energy and will to keep going as your children get older. Those with children might be able to look forward to years with grandchildren. But until then, what will you do to stay busy and look forward to the future?
It’s important to stay involved in life. Find something to look forward to. Whether it’s your child’s graduation day, watching a grandchild grow up, the next time your roses bloom, or just the next season of Orange Is The New Black, or Grey’s Anatomy (I could go on forever here). Find something to look forward to, something you don’t want to miss.
Even though I, quite literally, almost can’t move a muscle (okay I admit, I can bend my thumb on my right hand), if it weren’t for me, many things wouldn’t get done around my house. Even though I can’t physically do much, I do a lot. I can pretty much guarantee that the sheets on the bed would rarely be changed, if I didn’t ask someone to do it. No one would get a Christmas or birthday gift (well, maybe cash). I am the one who pays all of our bills, online. I also communicate with teachers, doctors, friends, and family, with the help of my Tobii eyegaze computer system (Thanks Team Gleason). I have hired housekeepers, online. I make sure we don’t run out of toilet paper, and have food in the house. I make travel arrangements. I planned an entire trip to Ireland all online. I garden and decorate my home. Or, at least I get one of my unpaid children to do it. I once organized (with some awesome benefactors), and raised money for a trip for a young Facebook friend of mine with ALS, to go to an IndyCar race in Long Beach. I started this blog. I could go on and on. I find ways to stay involved with life, and find enjoyment in it, no matter what health problems I might have.
If you are going to have a reason to keep going, you are going to have to listen to your heart. You need to enjoy life and have a passion to live it. Life is all about having fun! No one teaches you that in school. If you aren’t having fun, sorry, but you are doing it wrong. For me, as my children got older and less of my time was spent concentrating on them, I was led to start writing down my thoughts. A friend of mine, Sarah Ezekiel, was led to create beautiful artwork with only the use of her eyegaze computer system. Whatever you find you have a passion for, go for it! It only matters that you enjoy doing it. You may find that your singing will make a baby cry, but if you enjoy it, go for it, hit the karaoke club! Just find something to keep yourself involved in life and thinking about and planning for tomorrow!