Incontinentia Pigmenti

One in a million, or likely more

1,200 reported cases,

our hearts dropped to the floor.

It's hard to explain, the love of a mother

something you have to feel to know

and it's like none other.

At the Children's hospital at 2am,

I sat with my newborn on my chest

furiously googling, awaiting results from the tests.

So beautiful and special, and wild like a lion.

Now three, she jumps and runs

and I have to keep my eye on

her, because she's so smart and so ... three.

And every day I pray that her heart

will stay free.

Free from the pain of being different

and special,

at ages where fitting in is all that's

important.

When her hair and her skin and her teeth

and her nails

won't cause her pain, from within

or from anyone else.

The diagnosis was so scary,

the articles on Google were so varied.

What would her life be like,

and the worst thought,

like some,

would it be cut short?

But she's alive and thriving,

growing and achieving.

She's fiercely independent and

to be honest, just a little crazy.

Eye surgeries at four and six months

and again

just a few months ago.

We've found a community

through social media,

support in places I'd never

have thought to go.

And now as I sit here and type,

I can hear little feet running through

the house, tormenting her older sister

and laughing without a care.

And the fear I once had,

with a diagnosis so uncommon,

has lessoned and eased

into something more normal,

for the future of my special girl

and a world which will one day

be hers.