Letters to Lior: May 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.

Monday, May 9, 2016

Mothers day

Hello my precious

In general conversation the other day with a friend we were talking about someone she knows and without realizing, she asked me how someone can feel so sad and so happy at the same time, it doesn't make sense.
The only way I can describe it was to say that its very easy to feel that way - take me for instance - I am very happy because I am ever so privileged to I have six beautiful children - three amazing and beautiful daughters, One little boy who was and always will be the biggest and most precious blessing of my life, two beautiful step daughters and a really special, generous, kind hearted and loving man who is always by my side - BUT - I am incredibly sad and heartbroken at the same time because I don't have my little blessing by my side. I don't have you to cuddle and kiss anymore and that is exactly how it feels every day, happy yet sad, but especially yesterday on Mothers Day.

My heart will always have a full yet empty feeling - I have so much to be thankful for but yet my heart feels like there is so little to be thankful for.

Love you and miss you always my angel.

Lots of love
Mommy