Saturday, March 7, 2015

Trisomy Awareness: INSPIRATION (Day 7)


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

Today's key word is INSPIRATION  ......

Let me tell you a little bit about inspiration!  Nothing, and I mean NOTHING, is as inspiring to reflect on your life, your family, your everything, than watching your child fight for his or her life.

These little kids are sooooooo amazing with what they have to put up with.

It's not like they are really given a choice, and it really because what they see as "normal" because it's all they know.

Because it IS their "NORMAL" ...

Nothing is more heartbreaking, also, than having to basically force or talk your child into doing something that A: you know they don't want to do, B: will hurt them, C: will make them so unhappy.  It's hard to tell your child "It'll be alright" when you know they are do for a blood test, or surgery, or when you don't even know if it will be alright.

These kids keep going - they keep smiling and laughing - they keep waking up every day and enjoying their lives.....  AMAZING and INSPIRING doesn't begin to cover it.

As a parent of TWO of these amazing kids, four if you count the oldest and youngest with their less rare issues ....  I can tell you that I have learned we have to handle each kid a different way.

With Noah - you cannot tell him he has an appointment until the day of or his anxiety gets the best of him and he psych and stresses himself out.  When he does find out it's a repetitive bombarding of "Will they poke me? Will I get a shot?  Are they going to hurt me?"  And what do you say?  When I'm 99% certain nothing like that will be going on, I tell him so.  But I still haven't figured out how to handle when I don't know.  Because there have been times where we have gone in and they have wanted to do tests when I thought they wouldn't.  So now he doesn't necessarily trust me on that matter anymore, so he spews it at the doctor as soon as he sees them.  He carries around so much anxiety and it stems mostly from the countless tests, surgeries, hospitalizations, pokes, prodding, and the trust between him and the medical community is lost.

Nathan has his moments where he's like Noah.  He sees a particular clinic and he'll start yelling "Nooooooooo I don't want to go there!"

And it's heartbreaking because no child should be afraid of their doctors, of the clinics, etc.  It's hard to see them react the way they do because it's coming from a place of fear.

I feel, at least in my experience, that the most important thing to do is to....

1: Make sure that they don't FEEL like they are DIFFERENT in their own home, as much as possible.

2: To support them in whatever way you can without drawing a bunch of attention to their medical issues.

3: There is no shame in bribery ....

4: Talk to them, be open to their questions, make sure you help them understand their medical issues without making them feel different.

5: Celebrate their medical issues.

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: