Tomorrow, this one turns four.It feels like such a weighty number, a solid, established amount of years to have been on Earth. Four. I remember the geometry lesson: Two points can make a line, and three points can make a plane, but four points can define space. Four can contain the galaxy. My girl is a big fat four. And our years together feel like they’ve contained a galaxy.
Inside that galaxy was my silence. For the first year of Fiona’s life, I didn’t write anything publicly about her syndrome. I just didn’t. It was like I had to keep swallowing the diagnosis down into myself, to figure out what it would do inside me.
And inside that galaxy was my denial. My “maybe she’ll never show any delays.” For her first several months, I gave offerings at the altar of Normal, worshiping a concept I’d some day kick.
And inside the galaxy were Fiona’s onesies and her diapers and her co-sleeper and baby monitor and crib and all the usual accouterments of new parenting. The burping, the bouncing, the poor nights’ sleep: it was also there. As were her eyes, dazzled and dazzling and seeking your face.
Of course inside the galaxy was also my husband and my crash course in medical complexities: seizure types, atrial septum defects, hypotonia, asymmetrical vertebrae, hydronephrosis, thin corpus callosums….And many, many doctor’s appointments. And many, many minutes spent in waiting, sweating, in hot doctor’s offices.
Inside that galaxy have been seizures, almost always very late at night. Several minutes into them, I usually realize I’ve forgotten, completely forgotten, the option to pray.
And inside the galaxy, too–particularly for the first year and sometimes two–was my wish that things were different, which is a very cold prayer indeed.
But within the galaxy of these four years has also been a slow, consistent, huge rewriting of my thinking: a surprising acceptance of her chromosomal deletion. A wake-up to the notion that this genetic diversity of hers is not a deficit but a gift, the fruits of which I will only ever partly come to know.
Now I talk walkers and communication apps. Now she has both.
Now I research good IEP goals. Now she laughs when she throws sand in someone’s face. (Not funny, Fiona.)
And inside the galaxy has been her development, carefully tracked by experts in all categories: fine motor and gross motor and feeding and speech. She’s gone from lying around to walking. From barely gripping a baby ring to coloring with a crayon. From letting milk dribble from her low-tone mouth to eating hard pretzels.
From using zero words to using, thanks to her talker, a hundred or more.
She once could only whine. Now she gives greetings, makes requests, offers commentary. “Poppy funny,” she said today while she was on FaceTime with her grandfather. Indeed he is.
Lately, my girl’s been combining words with her talker. She’s making what Speech and Language Pathologists call “two- and three-word utterances.” It’s awesome. Most often, she tells me what she wants.
Bathroom. Want. Color. Want. Bath. Want. Mom. Want. Jesus. Want. (?) Song. Want. Kitten. Want. Kitten. Want. Kitten. Want. Swings. Want. Cheese. Want.
If I hedge, she adds, “I.” As in, Cheese want I. Just in case I didn’t realize.
So here we are, entering her fifth year. And it seems appropriate that after all this space travel through our vast galaxy, only some of which I’ve mentioned above, my girl now seems to want the world.