Trisomy 18, or known as Edwards Syndrome affects 1 out of every 3,000 live births (according to statistics) Of those born alive 90-95% die within the first year of life and only 5-10% live to see thier first birthday.
This was the terrifying news we recieved about Nolan alittle over a year ago February/09 was when we knew a new journey for our son had begun, even if it was short.We gave him a name and started talking to him everyday, we wanted him to feel our love.Nolan deffied every odd.Nolan is still defying odds everyday.
Tonight i feel like i really dont know if i will ever understand that he might pass one day...i really dont want this to happen, i shouldnt even be typing this, afterall he is doing soooooo great! but every once in a while it creeps up on me.I sit here when its queit or when i try to sleep...and think...long.Probably because some doctors or even nurses say things that feel like a punch even if its a small comment i think about it later. It's like it haunts me from the day we found out and being terrified everyday while i was pregnant that he might pass inside me, even though i felt his strong kicks daily , all the hopelss doctors and us pushing past them and keeping our baby was very emotional sometimes.I wish they could see him now, and understand this is why we gave our Nolan a chance.
I just want him to be with us forever, even if that means carrying him around, changing him, bathing him, feeding him and rocking him everynight till he falls asleep ...I want to carry nolan for the rest of my life.
Thursday, June 17, 2010
I want to carry you forever..
Posted by Amanda at 11:43 PM
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1 comments:
What a touching post. Amanda you and Nathan and Lexie have been such a wonderful family to Nolan. It is such a pleasure to read about how you love him and enjoy life with him.
You love him unconditionally, regardless of his delays. What a beautiful testament that is, especially these days.
It is so difficult to live with the uncertainty that one day our kids will pass away. Take heart; love never dies. Never. You will always have the love Nolan created with you. For now, we celebrate!! One year almost. Maybe you could send a picture with your touching words of love to all of those geneticists and doctors from the early days. Maybe it would help them to counsel differently for the next parents.
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