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, August 15, 2017

Did I ?

Aaah my precious - so much in my thoughts and my heart today .... just like very other day.

Today my mind leads to something I sent in 2012 ........ My promise to you, daddy and your sisters and I cant help wonder ....

I promise to be the best I can be and to give all I can give  - did I give my all - did I give you everything of my being
I promise to be strong for you when times are tough - was I strong when times were tough, was I brave when I needed to be, was I strong enough to comfort you
I promise to give in and allow you to comfort me when I need it - did I give in and take the comfort when I needed it most
I promise to listen to your inner most feelings however you express them - did I listen to you ..... really listen to you .... could I have listened more and picked up more .... could I have known ....
I promise to be brave for for you and for me - was I brave enough for the both of us, in fact for all of us
I promise to keep God in our lives - did I keep him in our lives enough
I promise to try and keep the humour when times are tough - did I try smile and stay positive  in tough times, did I try and make it easier for you and for all of us
I promise to cry with you when you need me to - did I cry enough ..... what is enough
I promise to take every opprotunity in guiding you on the right path wherever I can through loving discipline -a miracle angel who changed my life in every way - you my loving child, disciplined mommy ...
I promise to support you in every way possible - did I do enough, was I enough ... could never have been enough
I promise to love you unconditionally - was my love unconditional, could I have loved more, could I have shown you my love any more, ....
I promise to always keep you in my heart - was and forever will be in my heart for all eternity
I promise to lead by example - was I and am I the right  example to you and your sisters
I promise to allow you to make your own mistakes and learn from them - have your sisters learnt, have I taught them what I needed to, have I guided them in the way  a mother should, the best way I can
I promise to comfort you when you need comforting - did I comfort you enough when you were happy and when you were sick, did I comfort and love you enough the day you took your last breath in my arms and your heart stopped beating
I promise to get right back up when I fall down - I'm too scared to fall down because in know if I do, I will never get back up -  ....... a promise I cant keep
I promise to pick you up an carry you when you fall down - have I picked your sisters up when they needed me to
I promise to let your light shine through - did I let your light shine enough for the world to see
I promise to advocate for you in everything that you are and in everything that you do - did I advocate your life, your love, and your being as I should have
I PROMISE TO BE EVERYTHING I CAN BE FOR YOU AND FOR ME - was I everything for both you and me , but most importantly was I enough for you. Was I what God intended me to be when he gave me your precious soul ...

So many questions, so many unanswered.
Love you and miss you my binky bums.

All my love for all eternity - Mommy