Lydia is 4!


Lydia is 4! I’m happy to say our girl is doing as well as ever. We are a whirr of therapy appointments, doctors visits, and daily exercises but Lydia remains the calm at the heart of it all. She is happy to rest in her chair and observe the bustle. She does protest throughout her physical therapy appointments, as this requires her to be out of her favorite chair and moving limbs that she prefers to ignore. But she loves eating the homemade applesauce that the neighbors brought over…and looking at the colorful mosaic of fish cartoons in her book that she got as a present from her school…and being spoken to in conspiratorial tones, particularly from her favorite redheaded teacher. Her communication is subtle but it’s there. A brightness in her eyes, a little kick of her feet. Smiles. She is a happy little girl who doesn’t need a princess outfit or a cupcake or pony to be perfectly content. She also doesn’t need to tie her shoes, say words or hold up her head for that matter! I struggle with both wanting her to improve – birthdays being a marker for all the things she can’t do – and yet recognizing how complete she already is. She’s still the same miss Lydia despite the direness of her MRI and her snail-slow progress. Just look into those eyes. Her talent is not being typical, clearly. Her gifts are to be found outside of those milestones, those rules.

In the early, heartsick days after her diagnosis as I was waiting for one of many appointments, I wandered into a Tibetan shop in Oregon. I felt like I needed something to remind me of other worlds I did not know or understand. Something to show me that there was might be another perspective besides despair over the fragile child I had been given. Drawn to a red and gold silk banner on the wall, I impulsively asked to buy it. The man behind the counter gently brought it down so I could look closer at the delicately threaded letters and gold swirls. As he carefully wrapped it in tissue paper he said, “this honors the goddess of compassion, Om-ta-re-tut-ta-re-tu-re-swa-ha.” Ever since then, the banner has hung in Lydia’s room. Over time, one of my perspectives has become that I am raising a young goddess of compassion. She is here on one of her many reincarnations to remind us of the goodness in each other, to keep us company, enjoy applesauce and offer contented smiles. She has a much more important job than tying her shoes. Happy birthday, little goddess!