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.

Tuesday, July 22, 2014

Just about sums it up

Aah my big boy ....

The days goes by so quick yet seem so long at the same time. Time doesn't seem to be healing, maybe because I have tried to be strong and now it just doesn't feel like I can anymore.

I read something the other day which pretty much sums up how I feel .......

"I have arthritis of the heart and every inch of my soul aches.."

I don't think any other words can explain it better than that and if that doesn't explain it, then nothing ever will. My body physically aches, my heart physically feels like it has been broken into pieces or as if it is pulling so tight all the time. I am continuously tired and seem to cry a lot more.

I guess now and its probably only human, the questions now start and I seem to torment myself;

Was I a good enough mommy to you?
Did I give you everything you ever needed?
Did I cuddle you enough?
Did I love you enough, the way a special needs baby is supposed to be loved and for that matter the way any child is supposed to be loved by a parent?
Did I play with you enough?
Did I keep you comfortable enough?
Did I do enough to keep you pain free?
Did you know that I loved you so much, was I able to make you feel the love?
Did I tell you that I love you enough - even though I would say it out loud and whisper it to you several times a day?
Did I do what God expected me to do when he gave you to me?

And then the biggest question of all, WHY and HOW ... what actually happened that you were taken from us. Were you tired and just couldn't any more? Was your little body poisoned from your colon? Could I have saved you. If only I knew why. So many more questions and I cant seem to answer any of them or find any comfort in anything ..........

Never a second that goes past that I don't think about you.

Love you to the moon and back. Love you more than all the grains of sand in the desert. Love you more than anybody could ever imagine

xxx
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