Letters to Lior: April 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.

Thursday, April 14, 2016

Its your birthday month

My precious angel
15 more days and it is your birthday - 6 years old yet forever 4 years and 14 days.
Oh how I miss you. I miss your smile, touch, smell, cry, your laugh, your deep breathing whilst sleeping, feeding times, bath time, your shouting and your intense concentration when you wanted something or watched cricket on TV. I miss you banging your head against mine and the way you used to swing your legs up and down when you would lay in bed with me and daddy when you didnt want to sleep, and the way you always used to put your lips together and make a "mmmmm" sound as if you wanted to say mama. I miss hearing your giraffe rattle that you loved so much and seeing your chair rocking to and fro every time I come home from work. I miss the way you always used to look into a specific corner of the room and smile or laugh, as if someone else was there with us.

The days seem to be a little longer, I so want your birthday to come so that we can celebrate you, yet at the same time I don't want it to - because it is too heart breaking knowing you are not with us. I think about it every day and then the sadness and hopelessness kicks in and its migraine after migraine. I see how daddy is emotionally taking strain the closer it gets - and my heart breaks for him and your sisters because I am helpless in making it better for them.

The other day I saw a post asking if you could describe your trisomy journey in one word what would it be. I thought about it for a while and there really isn't only one word that can be thought of. Yes there are many "one words" I can say but just one does not describe the life we had with you. It was miraculously amazing, majestic compassionate, perfection, honoured, pure and unconditional love, indescribable, terrifying, scared, helpless, hopeful, tired, exhausting, inspirational, pure joy, pure sadness, exquisite, empowering, challenging, blessed, rewarding and so so so much more - yes there are some "not so great" words, but that was part of our journey. Let me just say though, the good far out weighed the "not so good" and yes if anything, life was put into perspective and having had you in our live is the most rewarding thing anybody could ever have asked for - and now you are an angel in heaven looking down on us.

Love you my sweet angel boy