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, July 28, 2011

confusion and fear

Morning my precious angel. This week has been a relatively tough week, you have been ever so niggly and between 8 and 12 at night you dont stop crying.

Mommy has been having a really emotional week but somehow without realising I have pushed it aside, but yesterday I was no longer able to keep it in anymore - my tears welled up and just kept sliding down my face, at the most difficult times of course - when I was driving - but I guess this is my alone time and when I can scream shout and cry without worrying about anyone else seeing me or offending them or making them tearful. My chest felt so tight and I kept hearing this awful sound, eventually realising it was me who was wailing, it was me who couldnt stop crying.

Daddy and I have both noticed some changes in you and it scares us, although you get more feeds per day you seem to be losing weight and just stay continiously hungry. The way you communicate with us has changed - not quite sure how but it has. What scares us the most is that your breathing patterns have changed. You lose breath far to quickly and when you get the slightest bit excited it tires you, and your breathing just seems to become too much of an effort for you - making you sound like you have the most severe case of croup and I can hear it hurts. It takes so long to settle you when you cry and it never used to. There are times when it seems like you are talking to your angels and then all of a suddden screaming at them - it confuses and scares us.

Although we know the statistics and what medical research tells us and as hard as you think you can prepare - we just cant. Daddy and I fear your time with us wont be as long as everyone expects. There are times when we feel as if God is calling you and you just keep fighting so hard to stay - especially this last week - and only now realising that this is why I have been emotional - I have pushed it aside and been in denial. We are scared beyond measures. I am scared I wont be able to go on,  that my heart will stop with yours. I am scared for Daddy and your sisters. I am scared I wont be strong enough for them that I will be unable to comfort them cause I will be in such a state of dispair. My heart is broken and everyday it feels like a piece is chpped away and I will never get it back - just like every second I spend with you, comes and goes and I want more and more and more and I am scared I wont get more. I am scared if I shut my eyes I will lose all perspective and that I wont be able to see you or feel you, that you will be gone within a split second.

I am scared I cant take the hurt away, I am scared that I havent loved you enough - not that I think I could love you more than I already do, but every day I do love you more and more. I am scared that I havent kept you comfortable enough. I am scared that I havent taught you what I was supposed to teach you and most of all I am scared I will never realise your reason for being here, for coming to me and daddy and giving us more joy than what we could have ever expected.

My heart is aching, it feels like its being torn in all different directions and then squeezed till it cant be squeezed anymore. I am scared I wont survive losing you and keep your memory going.

I love you prevcious angel - more than anyone could ever know !!!
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