Dear Ella,
As I write this you are laying fast asleep on my chest covered
in a mound of blankets. As a listen to the little sounds you make in
whatever dreams you are having, I cannot help but think about all the
other Ellas the world never got to meet.
You see you were born with something called Trisomy 18 (Edward's
Syndrome). A chromosomal abnormality that causes a verity of severe
organ abnormalities including the heart and brain. It also causes, among
other things, you to be very tiny. You truly do not belong out in this
world. It is too big and too cold.
In The West, Trisomy 18 is a disease that doctors and parents can
test for before birth. Doctors label it as "a problem" that can "be
handled". They sight the list of facts that prove "the fetus is
not compatible with life." Only 5-10% of children born with Trisomy 18
live past their first month of life and only 1% live to adulthood. A two
months old Ella, it is true you are a miracle baby girl.
I wonder how many other babies were labelled with this horrible
disability were never given the chance to prove that they too were
miracles from the moment they were conceived. I wonder how many mama's,
by choice, missed the chance to marvel at their babies tinee tiny hands,
feet, or my personal favourite, your ity bity ears. I wonder how
many soft downy heads never were stroked as the babies fell asleep. I
wonder how many parents lost out on the funny bewilderment at how
stubborn a 2 pound 2 month old can be.
I wonder how many of the hundreds of people who liked your Facebook
photos Ella, would have rooted for you before you were born. Would they
have celebrated life if you had been their girl?
I admit the thought of caring for you has me a bit daunted. When
Sarah akka first told me we had a baby coming with Trisomy 18 my first
response was "Dear God, no". I knew what T-18 was and the odds babies
with it have of survival. And every time I hold you I swear I am going
drop you or injure you in some way. But, baby girl, as I look into your
big brown alert eyes I cannot help but fall in love with you. Ella, if
you are willing to fight for everyday of your life, I promise I will be
your fairy godmother and wave any magic wand I have to help you make it
to the ball.
Ella, you were created and chosen with a unique purpose to serve
The Master. And since I have met you I now know the reason you were
brought into my personal life. I have always believed in the sanctity of
life and have always checked the box marked "pro-life". But I avoid
confrontation like the pelage and have been willing to stay quiet so as
not to "rock the boat" As I feel you start to stir against my chest I
vow, cheena papa, to fight louder and harder for the other miracle
babies in the world. The ones who, like you (and your namesake
Cinderella) have the odds stacked against them with no one in their
corner.
I am so thankful for the chance to meet you, you 2 pound world changer.
May you always know the truth of your Hindi name "beloved". For that is
what you are.
Yesu ne prema and so do I.
(From March 8,2014)