Life is full of imperfections and certainly during different times in my life and even some days these days, it is hard to see anything but those imperfections. It took me awhile, but I can look back and see that those imperfections are what brings me perfection today. After all, would you really notice how great Arizona mornings feel in the winter if you didn’t experience the sweltering days of summer?
When Rett Syndrome hit my family, I admit spending some time uncontrollably sobbing as I watched other mothers with their kids being so…normal. I admit losing faith that there was a God as the horrible symptoms of this disorder kept assaulting my baby daughter who had done nothing to deserve the life she was dealt. And yes, almost 23 years later, I still do have days where I do dwell on the imperfections of our life, my life.
But then things happen that make me realize that my life is not so imperfect. In fact, as I look at my daughter watching her favorite Disney movie for the 100th time, I have an overwhelming feeling that I’m looking at a perfect human being. In those times, I realize that so much has happened since finding out that my daughter was going to have a life that was far from typical. And many, many of those things that have happened wouldn’t have happened if we hadn’t had Rett Syndrome strike our family. I’ve met some incredible people that devote their lives to philanthropy, giving and caring for others that need them even though they carry such a heavy load themselves. I’ve become acutely aware of the amazing work going on in the medical world that will allow us to see actual soul-filling miracles happen. I’ve seen dedicated technology inventors pursuing the right technology to help a small, afflicted population instead of the larger, more profitable, entertainment world. And I’ve made hundreds of friends that I wouldn’t have except for the unbreakable bond of parenthood of a severely disabled child. We just “get” each other and accept each other’s thoughts without judgment.
It would be easy to write exclusively on the daily joys and challenges that come with Rett Syndrome. I’m not going to do that although there will be some of that. I’m choosing, instead, to share the experiences, products, companies, and people that have made my imperfect life perfect. Some of the things I write about will have nothing to do with Rett Syndrome. They are just things that make me happy, feel good, or impress me positively in some way. My hope is that I can motivate others to stretch themselves to seek out perfection and not allow yourself to dwell on the imperfections.