Sunday, March 8, 2015

Trisomy Awareness: Belief (Day 8)


Share on the fb page, TrisomyFamilies, and their blog, support4trisomyfamilies.blogspot,  And HASHTAG ‪#‎trisomyfamilies‬ ‪#‎trisomyawareness‬

Today's key word is Belief  ......

In my head, while I was pregnant with Noah - I didn't really realize how scared I was.  How fearful I was.  I didn't want a lot of stuff at the house because ... just in case.... I didn't want to come home to anything that would remind me that I lost a baby.  I would walk into the baby departments and I would pick things up, stroke them longingly and force myself to put it back, because how could I buy something for a baby I didn't even know I'd get to bring home.

Most of these thoughts were self conscious.  It wasn't the belief I was going over my head, the one that had become my new mantra .....

My mantra ....  I just want to spend any time with him that I can get.  Even a few minutes alive is better than nothing.

13 years later, I'm still loving every moment with him....

Noah has Mosaic Trisomy 16.  Trisomy 16 is not compatible with life. There are zero known cases where a child with Trisomy 16 has survived, infact, most pregnancies resulting in a Trisomy 16 baby end before the first trimester and is said to be the leading cause of miscarriage (according to some literature.) There are less than 100 known cases world wide of surviving children with Mosaic Trisomy 16.  When Noah was born in 2002 it was around 35.  The advice given to parents who find out about this diagnosis during pregnancy is to terminate.  That was NOT our choice.  We were told he wouldn't live, we were told he wouldn't come home.  He wouldn't even survive the pregnancy.  We were told that IF by some MIRACLE he came home, he would be so mentally and physically delayed it "wouldn't be worth it" .... and yet, my son, who has Mosaic Trisomy 16, is 13 years old.  He is beating the odds because we didn't listen to what they medical community said and we trusted our journey.  I had to prepare myself for the chance he wouldn't make it, but I had such high HOPE that he would.  He shocked and amazed everyone, and he continues to!  He is The Boy Who Lived! There are a lot of Chromosome abnormalities.  They are not limited to Trisomies.  There are additions, deletions, and multiple changes in the Chromosome make-up.  Educate yourself!!  Ask me questions about our journey!  We love telling Noah's story! 

No comments: