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.

Monday, March 5, 2012

My promise

Good morning my precious angel.

The weekend is behind us yet again - hmmmm time goes by so quickly. You have been well and I cant really complain about anything, although your sleeping patterns have changed a little - but atleast you are still sleeping -  not sure why but I am not complaining.

It was a relatively relaxing weekend and with the girls away we watched a dvd called Courage and all I can say is WOW - what an inspirational message to send to families. The crux of the story is about a man who never really spends time with his family until a tragedy strikes and he loses his daughter and it makes him take time to reflect on his family life and he makes a resolution to his family to be all that he can be.

Today I make a resolution to you, your sisters and daddy. I dont want to be a good enough mommy and wife, I want to be an awesome mommy and wife. I know I dedicate myself to you all, but I also know that there is so much more I can give.

I promise to be the best I can be and to give all I can give.
I promise to be strong for you when times are tough
I promise to give in and allow you to comfort me when I need it.
I promise to listen to your inner most feelings however you express them
I promise to be brave for for you and for me
I promise to keep God in our lives
I promise to try and keep the humour when times are tough
I promise to cry with you when you need me to
I promise to take every opprotunity in guiding you on the right path wherever I can through loving discipline
I promise to support you in every way possible
I promise to love you unconditionally
I promise to always keep you in my heart
I promise to lead by example
I promise to allow you to make your own mistakes and learn from them
I promise to comfort you when you need comforting
I promise to get right back up when I fall down
I promise to pick you up an carry you when you fall down
I promise to let your light shine through
I promise to advocate for you in everything that you are and in everything that you do
I PROMISE TO BE EVERYTHING I CAN BE FOR YOU AND FOR ME

I know there will be times that I will fall down - but I promise to keep going for all eternity.

Love you sweet pea !!
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