OK, so my daughter’s marks are not from neurofibromatosis.
They’re from lemons.
It appears that her skin was exposed to lemon juice before going out into the sun, and it caused chemical burns all over her face and legs. It’s called phytophotodermatitis, which is also known as Lime Disease (not to be confused with Lyme Disease). The burns should fade in 6-12 months.
I’m still so in shock that I can’t even be happy yet. I haven’t exhaled. My heart is still stuck in the terror that she’ll be severely deformed and forever shunned from society. I can’t yet extricate myself from the maternal fear whose depths I couldn’t fathom until now. And I just made a donation to the Children’s Tumor Foundation whose mission it is to end NF because of course I did. I mean, jesus christ, what those mothers and children and families must be going through. I just lived through the tip of their iceberg, and I still can’t begin to imagine what lies beneath. They have to deal with neurofibromatosis, and all I have to watch out for is lemons.
It’s possible that I’m overstating this, but I doubt it: the experience of eluding this sickness might be the greatest gift I’ve ever been given. She could have had NF, and it’s sheer luck (or grace, if you lean that way) that she doesn’t, and so now’s my chance to quit planting seeds of regret. I want so badly to kiss her with all my heart and to love her without reservation, and so for fuck’s sake, I need to tear down the last of this ridiculous barrier that’s keeping me from bonding as fully as I can with my baby.
My sweet, sweet, sweet, lemon-stained baby with the crooked smile that I love more today than ever, but which I hope to love even more tomorrow.
PS: To those of you who got in touch after reading my last post, I am deeply grateful for you. Thank you, thank you, thank you so much.