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, April 7, 2011

16-09-10

Dear Lior

Caroline came to see mommy yesterday and it was great talking to her, but it also opened a whole mine of emotions. I think yesterday was the most difficult day I have had since being back at work. My thoughts just spun out of control. When I am with you it is so natural and nothing else but my family matters. But When I am not with you the fear sets in.

I fear most that I will not be with you when your angles come and get you, that I will not be able to hold you and cuddle you, that I will not have a chance to say goodbye and whisper to you that i love you one last time. I fear the pain and loneliness that your daddy and your sisters will feel.

Little Ethan came to visit yesterday and normally I wouldnt think of it, but yesterday it hit home, that I may never get to see you reach those milestones, walking around with our keys in your hand, and trying to kick an apple, walking under my desk and hearing you laugh, this is why I treasure every second I am with you. Your different cries, your coughing, your sneezing, the way you love to be without a nappy, and how you arch your back when you are in the bath until your head is in the water. How you talk to your sisters when I am dressing you, how you love to have your doekie against your face when you want to sleep and how at times you dont want to suck your dummy but my finger, I try so hard to keep these imprinted in my mind, I am so scared that I will forget.

How can you heart feel so much Joy and happiness and also feel like it has been shattered into a million pieces at the same time

I love you
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