Letters to Lior: September 2011

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, September 13, 2011

Letter to Miks

Precious precious baby girl, a daughter that any parent would be proud of. You have brought so much sunshine and love to so many people, taught them the meaning of unconditional love, taught them how to cope in the most difficult of times and still to remain positive and upbeat and smile throughout. You brought so much joy to your family especially your mommy and daddy, who were never, and will never be embarrassed about your diagnosis - they shared and continue to share you with the world, a world that is so much better for having "known" you, a world that has learnt so much from such a little soul, a world that is yet to learn more.

Although I never had the privilege of meeting you, I know only what mommy has told me and what mommy has shown me and I cant stop thinking about you and your big blue eyes. I sit here and imagine or should I rather say, see how all the other angels will "fall under your spell" - just as we did - how your big bright blue eyes and coy little smile will draw everyone in and they will love you just as the outside world has loved you and I am comforted to know that when the time comes, you will be there with open arms to welcome our little Lior.

Your little soul is at peace sweet baby - continue to shine your big bright light on mommy and daddy, let them know of your presence, let them bask in your warmth, love and protection, because I know, they carry you under their wings. Guide your siblings, cause you are a part of them, and they a part of you. Let them feel your amazing spirit.

Help mommy and daddy to shed their tears and laugh out loud with their memory of you and your special moments - cause special you definitely are.

Use your angel wings baby girl and fly high.

Love always