Rachel's Corner

I pulled weeds today.  It's one of my least favorite things in the world to do, but the weather was beautiful and dry, and excuses were hard to find, so Erin and I headed out to the front yard.  One especially long one had been growing out of a planter all summer. Every time I came in or out of the front door, I growled at it and swore I'd get it next time.  Today was "next time."  He put up a good fight,  held on with roots seemingly made of super glue, but, in the end, he was no match for my superior brains and brawn.

Spring is my favorite season.  The only problem with spring in Kentucky is that it is way, way too short.  On a good year, we usually clock in about 15 minutes of spring.  That being the case, we always try to squeeze every droplet of joy out of this brief time.  The cold winter is behind us.  The sweltering summer is in front.  This behooves us to make hay while the sun shines pleasantly, and we do.

FPWR is, and always has been, about BIG ideas.  We came together years ago with BIG dreams, dreams that sprang from BIG love for our dear, dear children with BIG challenges. We have used the money we have been able to raise to fund a BIG list of projects in a few, short years.   We have done everything we can to use BIG technology effectively, to get BIG brains together to come up with BIG ways to solve our children’s BIG problems, and to create an environment of BIG hopes based on realistic expectations.  It’s all about the BIG. 

Well, maybe not ALL….

Around here, there are two types of people—spring folks and fall folks.  As an extension of our obsession with the weather, we take our seasons pretty seriously. The two groups can argue non-stop about which of these two times of year reigns supreme.  I, a die-hard spring fan, wait impatiently all winter for the torture to be over and for the festivities to begin. 

Watch a video put together by new FPWR Member Rachel Pastiloff.

One of the constants in PWS is concern for the future.  From the very beginning, we worry.  We worry about what yesterday and today are going to mean for tomorrow.  We worry about the future of our child with PWS.  We worry about the future of our other children, and we worry about our own future.  To make matters worse, we even worry about how much we worry!  As always, we need to move beyond worry to planning and action.  There is no better treatment for worry than this! 

After some interesting PWS chats lately, including our discussion about whether or not to tell others about our children and PWS, I couldn't help but think about the broader issue of how each of us as individuals and families see PWS differently. It reminded me of the old story about 12 blind men standing at various places around an elephant. They were given the task of touching the elephant from where they each stood and then describing the elephant following their experience. Of course, each of the men gave a different, but accurate, report. The man standing nearest the skinny, flitting tail gave a very different description than did the man standing nearest the powerful trunk, and both were different from those who felt the massive, solid body of the elephant. The description

Today was one of those beautiful Kentucky days that make me so glad that I live here. As part of a great girls' day out, I took Kristen and Erin to the local science center and we enjoyed the exhibits and the IMAX. While strolling through the second floor, there was a machine that takes your picture and shows age progression. My first thought when I saw what was coming was to run, not walk, to the nearest exit and escape, but the girls weren't having any of that. I found myself plopped down and my picture captured, soon showing me old, older, oldest.... When you start out pretty old anyway, the story goes down hill from there!

Life with PWS sometimes requires some "tweaking" in order to up the chances that things will run smoothly. We often find ourselves at odds, especially with our children with PWS, regarding appointments/deadlines. Hurrying is next to impossible for many of our children since it requires an incredible shift from where they are at the moment to where we'd like them to be in the near future (schedules, appointments, etc.). Since this can be a constant struggle in our lives, maybe it's time to take a look at steps we could take to reduce everybody's stress.

I found a website in one of the homeschool groups I'm on that I think would be helpful to us as parents, and for our children with and without PWS. In all the tricky waters that we have to navigate, especially when we're flooded with holiday events, some parenting support might be timely for some of us. I know it has been helpful for me.