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, October 23, 2013

Not a natural chain of life



Good morning my precious.

Mommy has a very grateful but heavy heart today, and I know that no matter how "on guard" I am or try to be, thoughts creep in and last night was one of those moments.

I was watching a movie called The Christmas Shoes and it was about two families who, through sad circumstances cross each others paths. One where the father spends all his time working and pretty much none of his time with his family and the second family who spend all their time together and the mother has a heart condition which cannot be fixed. The family prepare themselves for the inevitable and "mom" says goodbye to her family, a very heartbroken husband and her very young son.

At this moment these thoughts started creeping into my head and as strange as it sounds, my first thought was that this is how it is supposed to be. Parents are supposed to gain their wings before their children and not the other way around. Not me having to let you go, but you having to let me and daddy go and living your life to the fullest. Growing up and going to nursery and primary school and then onto high school. Experiencing falling in love for the first time and treating your girlfriend like a queen, just like daddy does me, and finding that special lady that you want to spend your life with and me crying tears of love and happiness the moment your bride walks down the isle and I know its that time when I need to let go and allow another woman to love and cherish you. Getting to see you experience the joy of parenthood and me experiencing being a grandmother to my only son's children.

It saddens me to know that this will never be, for our lives will take the course of an unnatural chain of life. You will never grow to have a physical verbal conversation with me, - yes you converse with me and yes its awesome. I wish I could understand what you say and what goes through your mind. You are at the age where we should be running around after you playing hide and go seek, teaching you to kick a ball and making sentences and painting and drawing, all the things a 3 year old would do.

Yes as much as you are a blessing to us and as healthy as a trisomy child can be - my mind still has some of those thoughts and not that I alway show it, but there are those moments when my heart cries out, in actual fact it sobs, BUT I know that you are our special blessing from God, and as hard as it is, it is most rewarding and if we had to make a decision, like the one we made on Old Years Eve in 2009, where daddy and I decided that how you would come into this would be up to you and God alone - we would most DEFINATELY make the same decision again.

Somehow I think you knew I was feeling this way because early hours of this morning you woke up and wanted to know nothing but being in my arms and cuddling in bed with me, no crying or moaning, just snuggling into my neck and sleeping peacefully and soundly.

Love you more than words could say my angel !!
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2 comments:

  1. BeeGeeFebruary 10, 2014 at 10:51 AM

    Ugh, this one made me cry. It is bitter sweet to be lost in the moment with all the love you have for him now. But knowing what the future bringscan be so unnerving. I'm glad that he was able to pick up on your mood that day and just give you the loving that you needed at that time.

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  2. LiorFebruary 10, 2014 at 2:32 PM

    Thanks BeeGee - I think a lot of the time he picks up on my feelings

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