18 Ways Verity Has Changed Our Lives

This is our FIFTH year to celebrate Trisomy Awareness Month! March is the third month, and as a trisomy condition means there is a third chromosome, it makes sense that March 18 would be Trisomy 18 Awareness Day! In honor of the occasion, here are 18 ways our sweet Verity Irene has changed our lives...

1. We are much more aware of the needs of individuals who are "different." Not only that, but we are also sensitive to the needs of parents and siblings of special-needs children. It truly does take a village to support not only those who have a special condition, but also their caregivers.

2. We are more patient. (In general. On most days. OK, really, this is still a work in progress...but Verity has furthered the progress!)

3. We are more compassionate. I love seeing my other children interact with Verity! (I sometimes wish the compassion went beyond Verity to each other, sigh...)

4. We have learned we can exist on an average of 1.7 hours of sleep...in an entire week. (But we are VERY grateful for Verity's CPAP, which has increased that average exponentially since she got it almost 2 years ago!)

5. We have developed lightning-quick reflexes in order to grab the suction machine, catch projectile vomit, or stop the feeding pump when we realize it is feeding the floor (or the bed or the carseat or...).

6. We've learned to navigate insurance, doctors' offices, MyChart, Relay Health, therapists, and an ever-changing calendar. We may not enjoy dialing those numbers, but we can make phone calls to get answers AND action.

7. We take nothing for granted...

8. ...And yet we exist in a type of holding pattern for "normal" as it is defined for the moment.

9. We are thankful to know and interact with an amazing community of professionals including home health care nurses, doctors, therapists, teachers, and more who help support Verity in reaching her highest potential and living her best life.

10. We are now firmly entrenched in the Trisomy Tribe, an amazing community of families all over the globe, all connected because of an extra chromosome, as we share joys and triumphs, griefs and agonies.

11. We have opportunities to share HOPE with others because of our own journey. 

12. In fact, Verity is THE reason we are venturing into the world of non-profits as we set up an official ministry to support families like ours! While it is very much a work in progress (to include a web site still under construction), we are excited to move forward and carry out this vision that has been on our hearts for several years now.

13. We have a new vocabulary, not unlike the months I was a new bride/Air Force wife learning the acronyms! Sats, pulse ox, CPAP, VSD, ECMO, AFOs, DME, and more...I never would have known what these were if it weren't for our and our friends' journeys.

14. "Accessibility" is no longer an abstract concept.

15. I can't necessarily speak for all my other family members...but personally, my prayer life has deepened.

16. We live in gratitude. Literally every day we thank God for the many, many blessings we enjoy.

17. We find joy in small things. (Verity's giggles and squeals are a near constant source of delight.)

18. Our faith is stronger than ever. We aren't living in denial--we know we may face unspeakable grief at any moment. But the God who has brought us through the difficulties of life this far is the same God who perfectly and wonderfully made little Verity, our precious gift wrapped up in Trisomy 18 packaging. We can trust Him with the future.

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!