Letters to Lior: June 2014

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.

Friday, June 20, 2014

Our go to place

My precious baby angel - the days seem to go by so fast yet so slow. It has been a little over a month now that you are dancing in heaven. Time has gone by so quickly yet it feels like a life time. We are missing you so so much and there is just such and empty void in our lives, at home and everywhere else.

My arms long to hold you one more time, my lips long for one more sloppy kiss, my nose longs to smell your breath, my eyes long to see those beautiful sparkly eyes and my skin longs to feel your warmth - I MISS YOU, I MISS YOU, I MISS YOU - I just don't know how else to say it.

I look at your photos and I wonder how much your face would have changed in the time that you have been gone - its so hard not being able to see new and updated pictures - its so hard not feeling your presence.

Daddy and I decided that we needed to do a garden at home - our go to place for when we need to talk to you and "be with you". Its taken a lot of hard work and a lot of helping hands from the family and it is looking awesome. I cant wait till all the flowers bloom.

There is a beautiful lantern which shines to bright - just like your little light will always shine

A little angel who will always watch over us - just like I know you will

A beautiful bench with a lovely wind chime where we can sit and talk to you. Although your garden looks absolutely beautiful now as is - when its full of colour it will remind me of your beautiful and colourful spirit - one that never seemed to dim no matter how you felt.

There are beautiful rose bushes that are waiting to grow - for God's beautiful rose that he had to come and fetch.

We love you to the moon and back baby boy and miss you immensely.

Love Mommy