Letters to Lior

Trsiomy 18


There are 23 pairs of human chromosomes. In Trisomy 18 (Edwards syndrome), there is an extra chromosome with the 18th pair. Like Trisomy 21 (Down syndrome), Trisomy 18 affects all systems of the body and causes distinct facial features. Trisomy 18 occurs in 1 in 3,000 live births.It is three times more common in girls than boys. Unfortunately, most babies with Trisomy 18 die before birth, so the actual incidence of the disorder may be higher.Infants who survive, experience serious defects and commonly live for short periods of time. Trisomy 18 affects individuals of all ethnic backgrounds. Trisomy 18 severely affects all organ systems of the body.The majority of children who are born with Edward's syndrome do not live past their first year of life. Their average lifespan for half of the children born with this syndrome is less than two months; approximately ninety to ninety-five percent of these children die prior to their first birthday. The five to ten-percent of children who do survive their first year experience severe developmental disabilities. Children who live past their first year require walking support and their ability to learn is limited. Their verbal communication abilities are limited as well, although they are able to respond to comforting and have the ability to learn to smile, recognize and interact with caregivers and others. They can acquire skills such as self-feeding and rolling over.

Thursday, January 26, 2012

Remembering

Morning my precious angel face.

The last few days have been quite difficult. You are fine and absolutely healthy and strong, its mommy that hasnt really been ok. But at least today, its a bit better.

The day after daddy took you to the doctor for your check up, I was on my way to work and just out of the blue and ever so suddenly it was almost as if there was a tv in front of me and I was watching the night of your birth. From the moment we got to the hospital to moment I woke up the next morning.

Now this whole time I thought or believed I had cried my heart out, but what I was watching was the complete opposite.  I saw myself sitting on the theater bed waiting for the needle to take away all feeling - and that is exactly what happened. It took away ALL feeling. I saw the doctor take you out and heard you give a cry -  I could feel that heart wrenching feeling and heard myself saying "you are alive" and then it was quite, but the strange thing is, I wasnt watching you, I was watching me to see how I was reacting and what has been breaking my heart the last couple of days is .... I didnt react, there was no emotion whatsoever. This has been the hardest part because I keep asking myself, what kind of mother/monster am I if I had no emotion, no crying, no smiling, NO NOTHING ......., nothing but a bottomless pit of  ..... well .... of nothing.

Fast forward to when daddy came back to my room to tell me the doctors said you will probably die within an hour - I just looked at daddy and said No with a bit of a yelp but that was that. Still no emotion. I was concentrating on the hustle and bustle of people coming in and out of my room giving me condolensces - FOR WHAT !!!!!!! Everyones eyes were swollen and red from all their crying ....... and ME - NO CRYING, NO EMOTION, no nothing !!!!! what the hell is wrong with me, why cant I get the tears out, why am I not saying anything, why am I not demanding to see YOU - who am I, who is this person I am watching .... this "person" is just there and nothing else. Daddy, Ouma, Oupa, Granny, aunty Tich they are all there, but I am not saying anything, I am just looking at them, thinking GET OUT ...... JUST GET OUT WHAT THE HELL ARE YOU ALL CRYING FOR - JUST GO AWAY THERE IS NOTHING TO CRY ABOUT ...... but I say nothing. Councillors come and go - Religious councillors pray over me and go. The doctor comes in and asks us if we want to know everything that is wrong with you. I say No - whats the point. New doctors come and congratulate us and tell us we are being very mature with our decision. Hours later everyone leaves. A few minutes later I receive flowers from the hospital sending their condolensces at this difficult time - what freaking difficult time ...... what are you all talking about. Daddy needs to go to the girls .... they are crying and heartbroken. He turns to me with a heavy heavy heart and tears in his eyes and says "go see him, please go see him tonight" .... I pass out.

I am trying so hard to push this "TV" out of my mind .... I just cant take anymore - I DONT WANT TO SEE ANYMORE - but GOD wants me to see. My tears are falling, they are flowing like a raging river ... oh how I am hating myself right now.

Fortunately GOD has opened my eyes to the miracle of life. I am no longer blind and am full of emotion.

Love you sweet baby boy

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