“Go in peace, my daughter. And remember that in a world of ordinary mortals, you are a Wonder Woman.” – Queen Hippolyte from Wonder Woman
We went to our annual PWS Clinic less than a month ago, seeing nine specialists and several other families from around Colorado affected by the rare disorder. It was terrifying and hopeful and hard and incredible all at the same time. It is truly a roller coaster, this journey of ours. Perhaps most discouraging was the news that her hips aren’t looking as good as they had hoped months after her latest surgery. Her low tone just struggles to keep the bones where they should be. We were told to go back to bracing and come back in a month for more x-rays. I was worried that putting the restricting brace back onto her for naps and nighttime sleeping would frustrate her. In my mind, I was preparing for a battle and for at least a few sleepless attempts. But that first night, she smiled at me, finished her bottle, and went to bed like a champ. Like a super hero.
Still, I can’t help but think about going through surgery again if the bracing doesn’t work…the anesthesia, the casting, the hospital stays. And I feel frozen in my fear. But Eliza doesn’t. She is seemingly afraid of nothing, trusting in a world that for entire life has had her back. She doesn’t resist the changes but flows into them gracefully and even joyfully, soaring above all my insecurities and taking me along for the ride.
I wish I could bottle her sweet spirit and patient demeanor and carry it with me all the time. My body doesn’t struggle to move against low tone, I can drink anything I choose without the risk of aspiration, and I certainly don’t need a shot every night for the rest of my life. And before Eliza, I took that for granted…how easily I am able to navigate through the world without weekly therapies and interventions. Our health is such a precious gift that we often don’t appreciate until it is in jeopardy. But what astounds me most and what I pray she keeps is the sense that no matter what it throws at her, life is good. So good! That whatever struggles she faces, she can overcome…bolstered by a village that supports her, a God who adores her, and a sense of confidence and acceptance that carries her through with a smile on her face.
So here’s to you, my little Wonder Woman. You inspire me to face it all, trusting that we will not only get through it, we will soar.