At this time of the year, many people are becoming more introspective. Where does one start? With so many facets to our crazy lives, it is hard to put the brakes on and remember why we do what we do; why we have what we have; and how our lives have been shaped into what they are now.
Is it the cool and crispness in the air that brings people closer? Is it the thought of sending someone a special gift? Or is it just a time when celebrating a holiday-a-month becomes so important, we get reminded of what is truly important to us.
For us, reflecting on all the things we have accomplished during the year takes precedent. The new “normal” for us was something new and difficult to get used to. Realizing there wasn’t going to be that first roll over, sit to crawl, grab of favorite food (wait, there IS that one!!), or first bicycle ride. At every milestone, there had to be a change of thinking. How will this go for Laura? How will she be able to do it? Or not do it…again, a change of thinking because there WAS something bright and beautiful about that first grab and hold of the fork, that first lean to acknowledge your presence, that first look towards you when you called her name. THAT was the new normal and it is amazing! With our new family, Girl Power 2 Cure, there has always been a continued hope that something big will happen that will turn life around. There is comradery that has surpassed any before. We focus on all of life’s little accomplishments and are grateful to have those little things occur when we are able to see them happen. Every smile is such a treasure, every quick look of acknowledgement is her/him understanding what was said, and every lean or grasp is an amazing feat that we, as parent’s will truly treasure.
This virtual world we all tend to lean towards has made many of our lives so much stronger with connections to this new family we would have never had otherwise.
The virtual world is a wonderful place to keep in touch with the Rett community, friends, family, and a place to share thoughts and ideas; accomplishments and disappointments.
Necessity is the power of invention (as mom says)….well these complex children need to be able to communicate. Therefore, technology has enabled this to happen. Devices to enable “speech”, organizing thoughts and being able to convey them, this is all a tremendous wall that science has helped to break down. One of life’s BIG accomplishments: learning an entirely new system of communicating your feelings, wants, desires, interests, and basic needs. How would you handle such an obstacle?
The Holidays…A time to place our focus on what “the girls” can do, not what they cannot. Maybe awareness will become “natural” and the “look” from other people when you tell them your daughter doesn’t speak due to Rett, they will not look at you with a droopy “oh, I’m sorry” expression. Can we take this holiday time to focus on creating an environment of compassion; not only now, but throughout the full calendar year? Ask questions, talk to parents, talk to young adults and children about disabilities. Things are just different or done in a different way.
When I dwell on all things Rett, like during October Awareness Month, I remind myself what is positive in our lives: I have a home, a car, a job, a family with an incredibly compassionate husband who will do literally anything to “fix” what he needs to; I have a wonderfully healthy girl who works so hard every hour of every day. Laura is the most patient person I know who is dealing with many different people that are not able to understand what she is “cooing” or “uttering”, and she just goes with the flow.
For the holidays, let us all slow down and concentrate on current traditions or building new ones. The Walton’s will make our reindeer food and spread it out on Christmas eve. We will decorate our tree and try to add more lights to our house this year – found out how much Laura loves colorful light displays – something she never really paid much attention to early on. We will find some special holiday socks for her to wear, visit and share a meal with a favorite family – Laura is the guest of honor, of course - and try to have a meal that she will LOVE. Eating is her favorite thing to do! So, if there is anyone who likes to share favorite recipes for those on a vegan/FOMAP diet, we would love to share as well. We mostly enjoy relaxing, spending time with each other, and just plain being silly. As Laura gives a “Sense of Peace” to others, she also sends us a reminder to slow down, be patient, and enjoy life as it is.
Remember to Listen with Eyes wide open because you don’t want to miss the most excited “yes!” there is.
We have a daughter with Rett Syndrome and I can't say enough how much it meant to our family to find this organization. Finding Girl Power 2 Cure has given us purpose. We are motivated to work with them and raise money to find a cure for our amazing daughters!