Letters to Lior: September 2014

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.

Wednesday, September 3, 2014

So hard and so lost

My precious baby boy

This week has been so hard and I have been so lost without you. When I get home most nights I walk into the lounge and just rest my hands on your ashes, as if I will get some comfort just being able to touch you, even though its through a beautiful box. My heart is so broken.

My tears just keep flowing and I don't know how to stop them, every second of your last moments keep playing through my mind over and over and over again

Since Saturday I have been incredibly emotional. I normally don't and never used to shop at Woolies unless I was buying you clothes. Anyway daddy needed to get some stuff and after being there for about ten minutes I felt like I couldn't breath and needed to get out of there - I knew exactly why L then on Sunday Aunty Ursula told me she had a dream about you. She dreamt she heard laughing in her lounge and when she got up to see what was happening, there you were laughing and playing with bubbles. This is such a beautiful dream and brought me to tears instantly. In my mind I can just picture you doing this because you always were such a happy boy and always content with anything.

So two days of build up and Monday all I did was cry. If I had to try and tell you how I drove to work I wouldn't be able to. Why cant I dream about you, why cant I feel you - I am so lost and heartbroken and everyone else seems to be able to and I cant. I need the comfort to know you are ok.

I love you so so much my baby angel and maybe one day I will learn to live with this but for now, it just hurts too much.

Fly high sweet angel and soar the skies.