shuffling hope

It's hard to imagine that time could pass as swiftly as it has since my last post. This kid, he keeps me on my toes.

Turns out, he had an MRI, buried in some of the records from Johns Hopkins-ones I didn't see-and there was no evidence of spina bifida. Oh tired quiet wonderful deep joyful praise. Let me just rest in that for a bit.

This week alone, we have traveled to a GI doctor to discuss prognosis, an ENT for a followup to last month's visit, and a pediatrician for a physical and permission to have anesthesia for the Oct. 31 oral surgery. The GI visit was great-that's where we learned the spina bifida news. The ENT visit, not so great. YoYo had really dirty ears (let's all pause for a moment and recognize that I am using very gentle language to describe the condition of my boy's inner ears), and it has taken 3 weeks of nightly administration of very strong eardrops (bedtime + 5 fizzy drops in each ear + suctioning < fun) to get those ears clean without damaging eardrums. One clean ear is fine, the other isn't. Too early to say whether he is or will be deaf in one ear--we'll just have to wait until April, apparently. Boy am I glad for that spina bifida news.

We went to preschool for the first time today-scoped one out, actually, hoping to hear more Monday from them-and the little Prince grabbed hold of the rope with the rest of the kids in the class, waved and called, "See you later, Mama!" before jauntily marching out to the playground. I was so proud-and relieved-that he feels safe.

I forget, sometimes, that YoYo's wounds are hard for some to see. I have been so utterly plunged in up to my eyes with his care that it wasn't until today, at preschool, that I realized I must make his path smooth by helping those who will assume his care in my stead at school or elsewhere. How to anticipate the needs and uncertainty of others....

It's strange, but it seems that looking out for that fearful glance, the pause that may stop a person's tongue from voicing their fear of my son, their faintness at seeing him for the first time, and speaking to it gently, finding the person inside and behind that moment, is as much a way of loving Tian Yo as hugging him tightly. I wish I'd thought further, sooner. I felt suddenly such a need to limit his exposure and even his knowledge of it. When and how can a mother choose to help her child feel beautiful and unafraid and loved, and how can she make him brave for the future, and how can she teach him compassion for others?

With hope that shuffles from one day's good report to the next day's uncertainty-it shuffles, but it stays, and it dances, but is still. With love for the boy who races his car down the slide, who makes me Lego chairs, who takes my picture with tireless glee, who offers me his last pretzel without reservation, who jumps with newfound energy at 9:30 P blessed M. I help him most when I can meet him as he is, a sweet child who wants me to play and build with him, until even I forget the catheters and pouches and cleaners and medicines.