“Everyone longs to be loved. And the greatest thing we can do is to let people know that they are loved and capable of loving.” – Fred Rogers
I have been working on a post about last month’s Foundation for Prader-Willi Research conference since the day I got home. It was such an intense weekend for me that it’s been hard to capture it, so I went searching for a picture to inspire the post this morning and ended up revising it completely. What I saw brought out a whole different set of reflections, which seem equally hard to put into words.
To make a long story short, the FPWR conference was incredible! ALL the feels came out that weekend. I felt hope and fear and connection and determination. I am unspeakably grateful for the village of warriors fighting alongside me who have taken the charge and put themselves and their young ones in the path of uncertainty through clinical trials, surgeries, and countless different therapies. I am thankful too for all the researchers who have made PWS and all its complexities a little clearer, even when that clarity brings with it renewed panic at just how likely Eliza is to struggle with making meaningful friendships or suffering from mental illness. New studies show a stronger connection to those challenges with her specific subtype of PWS, and what I had once thought could wait until adolescence when they more fully manifest, I now know can be identified, predicted, and hopefully helped in this three to six-year-old age range.
Eliza can obsess over things more than most kids and has significant struggles with changes over routine, especially if food is involved. She also wants desperately to have friends but doesn’t always connect with her peers, who have essentially developed twice as quickly. At school drop off this morning, I witnessed two kids laughing at her attempt to create a pattern with leaves, a class project displayed in the hallway that shows her random cluster alongside her classmates’ neat lines. She was standing behind them but totally oblivious to the joke. It was such a minor thing, but it was the fourth time this year that I’ve left that hallway to cry in my car. It’s not that I’m sad that she’s different or even that she’s a little behind. In some ways, watching her learn in slow motion has brought more wonder and awe than I have found witnessing the same milestones with my other daughters. What I cry for most is the day that she realizes that her differences may bring with them pain, exclusion, and ridicule. So far, in those moments when she is told that she doesn’t know how to stand in a line correctly or that she talks funny, Eliza persists. She dances to the side of the line and continues to tell her story, unaware.
I want so much to preserve her innocence and to somehow guarantee that she will be spared from feeling the “otherness” that so many kids (typically-developing included) feel. She is four. I know it will probably get worse before it gets better, and I know that these kids are good kids who are also only four. I also know that for every potentially hurtful thing said, there are probably a dozen kind ones. But oh my goodness, it still breaks my heart. And then I look through these pictures, and I think of her smile. I remind myself that right now, she doesn’t know that she is any different from her peers. Right now, she still stops what she is doing and dances to any music playing nearby. Right now, she still smiles and waves to strangers in the grocery store like she is in a parade.
Right now, all I can do is what I can do. I can keep learning more about ways to help her, and I can keep working hard to plan a race that will hopefully bring more awareness to our community and more funds to change her future. I can keep repeating to her (and to myself) that it may be hard, but that we can do hard things. And I can hope and pray that even when she does someday realize the ways in which she is different, she will marvel in it half as much as I do. That she will keep shining brilliantly exactly as she is, fearfully and wonderfully made by a God who is crazy about her and loved by a family that has her back always, forever, and no matter what.