Yesterday, the incomparable Dolly Parton passed away, and everywhere I turn, she is there. The stories being shared remind me there is good, and hope, and love out there in the world. And as I’ve read some of these stories and was reminded of some of her many kind (and funny) words and deeds, it felt appropriate to frame this month’s message around some of the wise words of Dolly Parton:
“I make a point to appreciate all the little things in my life. I go out and smell the air after a good, hard rain. These small actions help remind me that there are so many great, glorious pieces of good in the world.” - Dolly Parton
It’s important to embrace this simple but profound observation, especially because navigating life with a disability or with a family member with a disability is tough…and complicated. A few weeks ago, I was talking to a friend and sharing my “excitement” for the decrease in chaos that comes with the teenagers in my life going back to school, and that friend said: "One day, you'll get it. You're gonna be so sad that your house is empty and wish it was noisy." The whirlwind of emotions I experienced in response to that was dizzying. The hard truth is, as a parent of an adult with a disability and complex needs, I may never experience an empty house, even for just a little while. Back to school time for me, and I suspect for many of you, can be a stark reminder of this lifelong commitment without meaningful breaks of any kind- which brings up so many conflicting thoughts, emotions, guilt, and even grief.
I say all of this to remind you (and myself!) that ALL of these feelings are valid - the good, the bad, the simple, the complex.
At the WSA, we are being very intentional about helping our membership tackle the “hard stuff.” In fact, this theme was one of the core messages I presented during my address at convention, and engaging in difficult conversations was central to this year’s convention programming.
“Storms make trees take deeper roots.”
And discussing storms adds important depth to community conversations.
Convention attendees discussed challenging topics like sudden death, organ donation, advanced directives, grief, boundaries, sexuality, discrimination, equity, anxiety, depression, mental illness, aberrant behaviors…and more. When you address these topics head on, you discover just how many families are facing the same tough challenges. This journey isn’t always easy, but there is great comfort in being part of a community where you’ll never be alone.
Recently, I’ve seen a number of families sharing stories about their loved ones' struggles with serious behavioral or mental health issues. Again, this is a difficult subject to address, but ignoring it shouldn’t be an option. We must raise awareness and reduce the stigma often associated with mental health challenges. Life is hard. My son Matthew’s behavioral challenges have heightened recently, to the point that riding in a car is dangerous for him and others. I’ve found myself vacillating from sadness to a state of “analysis paralysis” - not knowing where to even begin. My mind is full of questions. Is he struggling due to WS? Autism? Is it purely sensory related? Environmental? Situational? Are his meds no longer working? Do doses need to be adjusted? How do I find a new doctor to help? Does he need a therapist? Could he even understand therapy? What am I doing wrong? What am I missing? Who can help me? Who can help him? Why is this happening? Why can’t I make this go away for him?? I share this because I know I’m not the only one in this place. Though the “hard stuff” you’re experiencing may be different, my commitment to you is we will continue to talk about, and provide tools, resources, and support. And if we don’t have the tools or the answers, we’ll help find someone who does.
I speak on behalf of the entire staff when I say it is truly a privilege to serve this community. The energy and momentum in our organization is incredibly exciting, and we can’t wait to see where the future takes us! Thank you for trusting me to help lead us on that journey. This work is exactly who I am - and it’s a gift to do it.
When children age out of Dolly’s Imagination Library, the charity she began in 1995 that has put over 332 million free books in the hands of more than 3 million children because they plant “seeds for dreams”, they receive a final letter. This is a message that I hope everyone in our community - particularly those with Williams syndrome - will read and take to heart.
The letter ends:
“You and all of your friends are very special. There is no limit to what you can do or how far you can go. Just remember the lessons my family taught me—dream big dreams; learn everything you can learn; and care for all those who care for you. You do all of these things and you can be anyone you want to be.
“You are terrific, and remember…
“I Will Always Love You,
“Dolly.”
-Sarah
PS - Be sure to tune in to the Starry-Eyed Podcast this Tuesday, where we discussed more of our plans to provide information, education, and support all year long and between conventions!