Letters to Lior: February 2016

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, February 3, 2016

Taking a step forward

Hello my precious

I miss you so so much my angel - sometimes I feel like my heart is just being ripped right out of my chest.

Its been 20 months since the worst day of my life and still it feels like yesterday. Daddy and I decided that we needed to try and take a step forward and so we decided that it was time to dismantle your cot. It was horrible and painful - it felt like we were saying goodbye all over again.

I walk into my bedroom now and it feels so bare and so empty without your cot there. I don't think I will ever get used to it. Seems so much harder to sleep at night now, knowing I cant just reach over and touch it.

The hardest part is I don't actually know how to deal with what I am feeling, its like the anger has set in and I just want smash everything in front of me - its as though I am a ticking time bomb.

Why - why - why

There is a huge gaping hole in my heart and in my life which will never be filled again.

Miss you and love you so much binky bumbs -