I have to completely stop what I'm doing today and share this with you.
I don't often have these moments but I wish there were more.
Where I stop and realize how blessed I REALLY am with a beautiful, healthy child.
So, yesterday-one of my mom blog friends shared a local story of a child denied a transplant from CHOP.
My heart sunk when I saw her post - but like in any emotional situation, I wanted to learn more before I allowed the anger and the 'what the' to swell inside me. In all honesty I've been trying VERY hard to not judge by emotion but to learn facts first.
With that being said... I can't help but feel my own emotions.
I actually have never heard of Wolf Hirsch-Syndrome. But since I've been doing my radio show on Ben FM, I've really gotten to hear and learn about so many parents with children that have a chromosomal disorder.
A woman who I truly admire introduced it to me. Lisa is such an inspiration to me. She's such a positive person and really carries such light to life as a mom with a child with a disability.
It's really mind numbing for me to wrap my head around the entire scientific side of chromosomes and how the human body is created. It's natural. It's not made by a robot or a machine even.
And the thought that one teeny, tiny spec of dust (if you will) that creates a human can make or break all things living is deafening!
I know. That sentence didn't exactly make much sense. To you. My sentences make all the sense to me. lol
What I mean is-life is complex. (crosses eyes) I think thats what I mean.
I guess I could go in other directions with this. But moving forward - This story is all over the social media world today. What I'm understanding is that this child, Amelia, has been denied a transpant because of what Chrissy (Amelia's mom) relays the doctor as saying: “Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays”.
Now, by now you can easily recognize me dancing around the story.
Cause I'm not really sure what is appropriate. And isn't going to offend anyone.
But as I read what moms around the country are saying about this - the emotions are so powerful. Another one of the PSMM (Philly Social Media Moms) does some outstanding work for children and their rights. Mary Ellen Mannix shares her thougths on the entire story. Speaking of her story... wow. She created this website, James's Project. The tagline for her site sums it up to a tee. "Blogging so when babies can't shake their rattles..they are still being heard." She started this site after her son James died of preventable medical errors.
With all this being said.. my heart is really heavy today.
The comments continue to stack up negatively on the CHOP'S facebook page.
With putting my personal opinion of this story completely to the wayside.....
I have gratitude today.
Grateful in so many ways.
I'm working to get the details and true facts on this story. In the meantime-please feel free to share your personal thoughts, opinions, concerns.
And if it's in your heart to share your personal story....I'd be honored to hear it.