Monday, March 2, 2015

Trisomy Awareness: Trust (Day 2)


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

Today's key word is TRUST ......

One of the toughest things - I think - being the parent of child with medical issues ... is to ask them to trust you when you know that during appointments, there will be needles, or taking them to the hospital for surgery .... or watching over them in the hospital as they go through countless tests to try to figure out WHAT IS WRONG so they can fix it.  

You don't want to cause your child pain, you are built to protect them from pain.  So having to willingly - basically - hand them to others that will cause them pain - and asking your child to TRUST you for it ..... 

It's hard.  It's one of the hardest parts of being a parent of a child with medical issues.  

And yet they always look up at you with those loving eyes....  and those beautiful smiles keep you going when the guilt wants to suck you down.  They teach us so much more .....  

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! 

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