We are at my dad’s house in Colorado where internet is slow and cell service is spotty at best, and until our marathon of appointments for the PWS Clinic next month, we have no plans other than visits with family and dear friends. Before we left, Eliza was averaging six therapies a week…speech, occupational, physical, and aquatic. And when we return home, we’ll be adding equine to the mix. But for now, it is all on hold. I can’t tell you how much I’ve craved blank pages in my calendar after months of jam-packed days. We’re all relaxing into the rhythm of rest and play…there are fewer meltdowns, fewer tears, and less hustle. And it got me thinking that while this isn’t sustainable, perhaps neither is our status quo. Perhaps instead, we should be looking at making a move more towards that elusive balance I know everyone seeks and few of us find.
The tricky part is, every single thing on our schedule feels – and IS – important. Eliza is coming to the table with enough cards stacked against her, and if she’s going to struggle because of things she can’t control, then I feel this tug to do everything in my power to give her the tools and skills to level the playing field, even if just a little. Having a large team of specialists dedicated to doing just that is a tremendous blessing and a luxury I know is not accessible to all, but the truth is, it’s also so hard. Hard to schedule, hard to maintain, and hard to balance with all the other “real life” needs and demands. Most importantly, it’s hard on Eliza.
The last few months have been especially rough for reasons I still don’t totally understand, but it stands in such contrast to her now. Just today, she’s already caught (and named) minnows, looked for gems in the rocks around the property and set up a rock shop with her sisters, and dug happily in the garden. And she’s doing it all with a lightness and joy that’s mesmerizing. That has to weigh in. That has to mean something.
I think about what’s best for Eliza, and I can argue it from a million different angles and never be right (or wrong). I know she needs therapy and intervention and activity, but I also know she needs rest and freedom from expectations. Not just in the summer weeks away but all year round.