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.

Monday, May 15, 2017

3 years and two days

My precious angel

I woke up on Saturday morning knowing that its three years since I last held you and felt your touch, three years since your heart was beating next to mine and then beat no more. It was a hard day but somehow we have learnt to get through the difficult days. Time does not heal, we have just learned to deal with it with out showing it.

A few weeks ago daddy and I decided to go to the movies and watch "The shack". Now if anyone has seen this movie or read this book and lost a child, they will know exactly what emotions ran through me. Now I have never been able to physically feel your presence like daddy does but somehow you knew you needed me to know that you were with us. Through the adverts .....nothing, the beginning of the movie ...... nothing, but when my emotions were unbelievably strong, there it was, the only way you could get my attention.

Now because of your feeding tube and the valve in your tummy not closing, after most of your feeds you would bring up and its a smell that is very distinctive and one that I could easily associate with you, if you wanted me to .... and that is exactly what you did.

So to carry on, from the time I started crying watching this movie, I could smell it, right up to the end of the movie and then, when the credits started rolling, ..... nothing. As suddenly as it came, it was gone.

I always ask you to somehow let me know when you are near and I guess you knew I would need that comfort whilst watching this movie - so so so close to home.

Thank you my angel boy. Love you to the moon and back

Till we meet again
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