Raya was born with the hemangioma on her face. It took about two weeks for the pale patch of rashy-looking skin to turn into the bright red tumor whose contours we've gotten to know intimately, but we worried about it from the start. And from the start, we were forced to recognize that, regardless of her "different" look, she was a perfectly formed human being.
Around 2 months old.
For the first couple of months, I saw Raya's hemangioma all the time. I saw it while nursing her in the dark, when showing her to friends, while changing her diaper, etc. I got to know every last twist of the intricate interlacing of blood vessels which followed the strange white halo that is the distinctive marker of this kind of tumor. I worried about Raya's future, but mostly, I am embarrassed to say, I worried about having to explain the damn hemangioma to others. I sighed with relief when someone asked me about it so that I could give them the medical synopsis, and I always looked for ways to insert the subject into a conversation so that strangers would not feel uneasy talking about the bright splotch on her face.Then somehow, over the course of the first couple of months, I transitioned from feeling self-conscious about it on behalf of Raya, and always looking for ways to justify her look to others, to barely noticing the hemangioma, whether at home or in the world. Though bright as ever, the tumor somehow receded from visibility. It finally blended with Raya's face, and we stopped seeing it or asking ourselves what she might look like without it. This was the only face we had ever known, and to imagine it otherwise seemed a sheer impossibility.
Around 4 months old.
We did wonder how she would look without the steroid cheeks...
Seems a sheer impossibility.
Now that we know she is likely to wake up a couple of weeks from now with a face that bears only faint traces of the hemangioma, I wonder if she will look different to me, to Rado, to Sava. I wonder if I will miss the hemangioma, and if I will long for the daily reminder, exquisitely encrypted on her face, that beauty is, indeed, in the eye of the beholder. I wonder if somehow my newly acquired appreciation for the courage and love that propel parents of special-needs children will lose its edge because I no longer have a child who is even mildly "different." I wonder if I will forget that beauty and goodness reside within. I wonder if I will remember to cherish the present rather than worry about the future.
Best shot ever of the underside of her chin, which got some major treatment on Friday.
I hope not. The hemangioma will not disappear completely for at least a few more years, and in that time the lessons we've learned over the past year should, I hope, become integral parts of our life, just as the hemangioma ultimately became one with Raya's face.Because even now when her face is pock-marked with the bruises from the laser, I honestly don't see the marks when I enter her room to pick her from her nap; what I see is the irresistible smile and the irrepressible joy she brings to every moment of the day.
This week we ventured to the park after many days confined to the house by rain; it felt good, really good--
Now that he is reaching the end of the first semester of Suzuki violin, Sava is finally done with the box violin and this week got his first violin; he was thrilled beyond belief, despite the serious look on his face--
Raya can spend a good hour pulling out books from the box of board books we've wedged between the rocking chair and her crib, and she especially loves the Mother Goose rhymes. Unlike Sava, who never cared about nonsensical rhythmic language, Raya is a sucker for it. She also loves loves singing. We have several books with popular songs and large illustrations, and she makes me sing them over and over and over again. "Row row row your boat" and "I'm a little teapot" are the current hits.
It is probably considered cruel to be snapping pictures of your child while he is throwing a tantrum, but I happened to have the camera in hand, and just could not resist it; begging for chocolate right before dinner (dark chocolate...he never eats anything sweeter)--
And we've come to a curious realization this week. Our formerly timid and reticent boy, who still feels easily overwhelmed in social situations, finds himself a favorite with both mothers and children across the whole spectrum of temperaments at his preschool. Moms adore him for being a gentle, good listener, and kids love his readiness to be silly or serious, as the occasion demands. It helps also that moms like to hang out with his dad, on whose genes Sava's are patterned, so today the two of them spent five (that is FIVE) hours at the Children's Musem in San Jose, along with Sava's good friend, Kyle, and his mom. According to all reports, they had a blast. And they never separated, unlike last year, when keeping them together was pretty much impossible.
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