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, April 23, 2012

How quickly time goes by

Good morning my precious angel !!

 
Today there are so many emotions running through my heart. Almost two years ago we were basically told you will never be, and if you are, you will be severely deformed and not compatible with life.

My heart is ecstatic because "YOU ARE" and YES you have what some people would call deformaties ....... but you are perfect in our eyes. From not living longer than an hour to being two years old in a few days time keeps me in complete and utter awe. My heart is so full of love and light because we have had almost two years more than what we were told.

I am also heartsore today cause  I just wish I could freeze time. Not in a negative way that I dont want you to grow and flourish, but in the way that I will never have to let you go. In a way that when I wake up every morning I know I will be able to see your smile and know you will always be there for the rest of MY life, in a way that I will never out live my son, in a way that you will be able to see me grow old and me see you grow old, in a way that my son will have to bury me and not the other way around :-(

My heart is also celebrating because in a few days time you will be TWO years old - who would have ever thought. From what we were told, we didnt, but we have always believed and had faith and from what we know now, we still believe and have faith!!

Every day you teach us something new and no matter how hard it gets you always try, you always have a smile. You are so persistent even if you dont get it right. When you want to touch my face, there are times that it takes about twenty tries before you get it right, but you never give up. You aim as if you are about to throw and arrow and your arm will move back and forth ...... back and forth and then ...... yes you eventually get it right and the satisfaction on your face is priceless and the melting feeling in my heart is just as priceless. There are times when you get so frustrated but still you never give up. Thank you for teaching us to never give up my darling baby. Thank you for teaching us to believe and have faith. Thank you for teaching us to live, love and appreciate every moment.

Thank you for choosing me and daddy to take care of you. Thank you for allowing us to love you and most of all THANK YOU for loving us and trusting us no matter what.

Love you angel boy

2 comments:

  1. HAPPY 2ND BIRTHDAY LIOR!!!! Hope your day is beautiful and full of blessings. Smash a piece of cake for me! hehe What a great day it must be for you Mom, two wonderful years and lets pray many more to come. Take care :)

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