My soul melts away for sorrow; strengthen me according to your word!

This is my comfort in my affliction, that your promise gives me life. (Psalm 119:28, 50 ESV)

Tuesday, March 9, 2021

Trisomy Awareness Month: "A Few of My Favorite Things"

It's that time again! Last year we were kicking off a worldwide pandemic when Trisomy Awareness Month arrived. For heaven's sake, let's not have any more discussion about THAT, lol. Moving right along to Trisomy Awareness Month 2021...



A trisomy mom, Chelsea Spoelker, provided some graphics and prompts for sharing this month. The graphic above portrays one of the most commonly noticed characteristics of Trisomy 18 babies: their clenched fists. Verity's fists were very tightly clenched at birth, but with gentle stretches and therapy, her hands are much more pliable now--without splints or surgery.

You can see her overlapping fingers & clenched fist here.


Those who have followed our journey from the beginning have already read or heard about our diagnosis day, the pregnancy, the birth story, coming home, etc. So I have chosen to pick out some of the topics Chelsea suggested and share in the form of blog posts rather than social media posts, which are here today and gone tomorrow for the most part! I have loved seeing my Trisomy Tribe light up Facebook and Instagram with pictures and stories of their sweet babies! I truly feel that awareness and education have spread so much since we first got our diagnosis 4 1/2 years ago.

For today's post: 

A Few of My Favorite Things

Where to start?! As with all my children, I love so many precious, unique things about Verity. Here are just a few...
  • Her wild hair that has a mind of its own
  • The little "notch" on the right side of her mouth. (There's also the teeniest, tiniest pin prick of a not-quite-big-enough-to-be-a-dimple "hole" next to this notch. I have no idea if there's a technical, medical term for this unique feature, but I don't care. I love it.)
  • Her cute little elf ears. (They also have "notches" along the lobes.)
  • Her happy squeaks and squeals.
  • The way she smiles and laughs when she sees Daddy.
  • Her joy in simple things...like a birthday balloon that is starting to sag but still captures her attention.
  • Her sweet innocence. She knows no evil. She is completely, utterly dependent on her caregivers, and yet she knows no worry or concern that her needs won't be met. She loves and is loved unconditionally.
  • Her generally content demeanor. I remember when we were desperate to help her find relief in the early days, uncertain why she was so unhappy. And now...it's rare that she is NOT content or happy. 
  • The way she watches the world go by when we are riding somewhere. (She loves her bus rides to and from school and also enjoys being in the van with the family.)
  • Her impish grin when she knows she's playing a silly game or being a stinker!
I've realized that some of the answers I would give touch on other topics, so I'll close for now. I hope you've enjoyed this list of a few of my favorite things about our Verity Irene!

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