Choice. It’s all about choice and discipline with a sprinkle of nurture. We’ve all read about people and even know people who have overcome insurmountable odds in life that could have made the individual fail. I’ve always been curious about the impact one kind word or word of encouragement can have on an individual’s life course. My wise old dad, MOO (Mighty Omnipotent One), always said if you didn’t get a child by the age of six years old for the most part the die is cast.
I’m realizing now that he meant knowing right from wrong. One can always gain more education and obtain new skill sets to improve your lot in life. One can seek out mentors to guide us in building worthy impactful lives that remind us of our worth. Without a good moral compass though, an individual may miss out on many opportunities! I taught school before I had Kaelin. I always tried to instill in my kids that they were unique and worthy and that no one else was like them. Some of their parents were extremely strict, some extremely lax, and of course those in the middle but having an outside validation of their worth was always wanted and needed.
When you’re dealing with a progressive rare disease, there are days, ok many days, when one can feel like a victim with no energy to get up and continue on because life is just too hard and too expensive and just plain unfair! The whole circle of comparison between your child is higher functioning than mine or your child walks and mine doesn’t or your child’s birthmark is less than mine is a spiral that does no good. We need to infuse confidence and faith in our children that tough times don’t last but tough people do last, and they can be victorious! One must be vigilant against staying a victim. It takes discipline but I believe our children with SWS and all those who face adversity deserve the very best of us and they deserve nothing less than as much victory as we can provide!