Verity Is on the MOVE!

 Verity has places to go, people to see, and things to DO! 😂🥰

It's been over 3 years since the "Go, Baby, Go" event when we got this car. At the time, Verity was SO tiny. She had to be propped in place with all kinds of pillows and things around her to keep her upright and safe. She had no idea what to do with the big red button. All these other kids who were in the same age range were zooming around in their vehicles...and we were running around bent over helping her go.

I had such mixed feelings. On the one hand, it was so fun and exciting to do this project, and our therapists from The Resource Exchange worked hard to get Verity approved so that she could get a car. But on the other hand, I wondered...what was it all for?? My tiny little girl had no idea what was going on. Developmentally as well as physically, I just didn't know that she would ever be able to use this thing.

But we kept trying. And Verity kept growing. And now she's over 4 years old and weighs 27 pounds, 12 ounces. She is almost 36" tall. AND SHE KNOWS WHAT TO DO WITH THE RED BUTTON!!! Granted, steering is a skill we will have to work on, lol. But the point is...Verity is on her own timeline. She will ALWAYS be on her own timeline. We celebrate every milestone, or every "inchstone" as I heard another parent say. Other trisomy kiddos may be walking or talking or eating orally or doing any other number of amazing things we were told trisomy kids will "never do"--and we celebrate with and cheer for every one of them. Maybe Verity will one day do those things, but for now? Now, we rejoice that she can sit in her little car and make it GO by pressing a big red button. 

To God be the glory, great things He has done! 

Verity's Village - An Update on Our New Nonprofit

Things are happening fast around here, and Mom (aka Beverly) is spinning lots of plates at once...meanwhile...Verity has it made in the shade!

If you haven't heard our BIG NEWS, we have started a nonprofit ministry! Born of a dream that began in our hearts in the midst of desperate times in the early months of Verity's life, Verity's Village has taken shape in this first phase as a way to offer hope, encouragement, education, and practical support to families who receive a life-limiting diagnosis (of any kind) for their babies.

Our dream is to CHANGE THE NARRATIVE surrounding genetic anomalies...

from heartache...

...to HOPE!

If you've been with us since the beginning of this journey, you know the heartache we experienced after receiving Verity's diagnosis. Even when we were privileged to bring her home from the NICU after 18 days, we lived in constant fear for her life--after all, she wasn't expected to make it to her first birthday. Chronic sleep deprivation plus the stresses of a military move and life as a homeschooling family with 9 children led to some pretty dark times, to be honest. 

And yet...through it all...God's enduring faithfulness shone in the darkness.

And now? Life isn't easy by any means, but it's full of joy and HOPE. (And by the way...that HOPE would be present even if the Lord had decided to take Verity to heaven. We don't have hope simply because she is alive but because her life is eternal, and we will all live in heaven with Jesus someday thanks to His wonderful, gracious gift of salvation.)

Save the Storks gave us a generous $10,000 grant to launch Verity's Village this past spring. Because of that, we have filed our articles of incorporation and are waiting for final IRS approval for our nonprofit status. 

Meanwhile, though, we have made some huge strides! 

• We run a private, online support group for those who have received a prenatal diagnosis, providing practical support, education, resources (such as those listed below), and care packages. 
• We've published a special pregnancy journal for moms whose babies have a life-limiting diagnosis. 
• We have also published a 30-day NICU journal.
• I'm in the final stages of editing the book I wish I could have read when I was pregnant with Verity, From Diagnosis to Delivery: What to Expect When the Unexpected Happens During Your Pregnancy. 
• We are spreading the word about the services we provide to families in these situations through any means possible! We have sent out approximately 85 care packages in 2021. 

I'm doing as much as I can over the summer because soon the homeschool year will be upon us! Verity's Village needs to grow, grow, GROW because we NEED to reach more people. The needs are great. This is a HARD journey, and many (probably most) families come to us heartbroken already and feeling alone, afraid, and hopeless. We are here to walk them through this difficult journey and help them with the hard decisions so they can find hope, peace, and purpose no matter what happens. 

Would you like to know more? Reach out! We'd love to hop on a Zoom or get together in person (if that's feasible) to tell you more about our mission and how we've already been able to support over 120 families. You can view our temporary web site also to learn more...Storks is helping us with this aspect of our ministry, and we are still working on our logo and brand guidelines. Once that's finalized, we can go forward with our very own web site.

Would you pray for us right now? If you'd like to be a prayer partner or even support us financially, please reach out. We'd love to chat with you!

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!

Feeding Tube Awareness Week

It's that time again: Feeding Tube Awareness Week! If you know or care for someone who has an NG tube, OG tube, G-tube, J-tube, G-J tube, or any other combination of letters + tube, chances are you are already well acquainted with the Tubie Olympics! Some of the highlighted events include:

• The Emergency Button Change: how quickly can you reinsert a button after it has come out of your child's body? OR how quickly can you insert a new one upon discovering the balloon has sprung a leak?! Hurry! You have a short window of time before you have to pack everything and everyone up and get to the emergency room! But no worries: if you aren't quick enough, there's always the surgical option!
• Speed Clamping/Unclamping: When giving meds or water flushes, don't forget to clamp the extension tube BEFORE inserting that syringe into the med port! Otherwise you may find yourself entering an unexpected water event! Clamp, insert syringe, unclamp, push the water or meds, clamp, remove syringe and replace the cap. Even experienced parents sometimes forget to clamp/unclamp at the right moment. But no worries: a well-timed spray of formula, meds, or water is a fabulous reminder to do it right the next time! A secondary event involves remembering to unclamp the extension tube prior to starting the feeding pump. (See notes on "Silencing the Blasted Feeding Pump Alarm.")
• Feeding the Bed (or the Floor or the Car Seat or...): This event will have you springing into action to stop the feeding pump before any more food ends up, well, everywhere besides the subject's stomach. Maybe the tubing slipped out of the feeding port. Maybe the subject thinks it's hilarious to pull on the tubing or rolled over it in the case of an overnight feeding. (If this is the case, be prepared for an Emergency Button Change BEFORE dealing with the mess on the bedding.) Mental acuity is key as you assess the most important action to take first and then attempt to calculate how much food has, in fact, NOT been included in this particular feeding session.
• Silencing the Blasted Feeding Pump Alarm: Whether drawing attention in the middle of a church service or waking the dead in the middle of the night, this event pairs the need for quick reflexes with the inescapable desire to JUST MAKE THE NOISE STOP. Perhaps the amount of food in the bag was miscalculated, or perhaps the feeding bag got tipped so that air bubbles are in the line. Or maybe the alarm is going off simply because you forgot to unclamp the line to allow the food to flow through the line. Whatever the reason, the feeding pump is letting you know that there is either NO FOOD or NO FLOW, and you are responsible to fix the problem. Add more food or formula; prime the line to remove the air bubbles; and restart the pump...AFTER all ports are closed off and you have unclamped the line. 

I hope you've enjoyed this quick rundown of the Tubie Olympics! In all seriousness, we are so grateful for the technology that allows us to feed our Verity--without her G-tube, she would not be able to sustain herself. We are grateful for the supply company that sends us organic, whole-food formula, feeding bags, extension tubes, G-button kits, syringes, and any other supplies needed to feed our special girl.

What events are YOU an expert in?! What events did I leave out?!

A Special Pregnancy Journal

Recently I started a private support group for mamas who receive a prenatal diagnosis. In putting together resources for them, such as a place they can access medical research for themselves and their health care providers (who often don't have personal experience with the kinds of diagnoses the parents receive for their child), I realized there was absolutely nothing out there for those mamas in the way of a pregnancy journal. All the ones I found were happy, happy, joy, joy. Having been through a pregnancy fraught with anxiety and fear over whether we would meet my daughter alive or not, I decided it was time to create a special journal that would address the different aspects of this unique situation. While some aspects allow mamas to focus on the joy of a new life and the positive aspects, other sections help them work through difficult topics such as what in the world to do about a baby shower and how to formulate a birth plan.

The journal may be purchased here (where you can also get a sneak peek at the inside by clicking on the image) and would make a wonderful gift for anyone you know who is devastated to receive a prenatal diagnosis. I would love to get it in the hands of genetic counselors, palliative care teams, pregnancy resource centers, and other professionals who work with women who are carrying fragile babies. If this is you, or if you know of someone who ministers in this capacity, would you reach out? We would be happy to discuss options for bulk ordering to make this resource accessible to others! 

Contents include: 

• Journaling pages plus prompts to help you remember details
• Space to record your baby's diagnosis and unique needs
• Appointment trackers
• Ultrasound photo keeper
• Ideas for a baby shower
• "Letters to My Baby" section
• Birth Plan Brainstorming
• Hospital Checklist
• And much more.

Worth It

Two of my dear friends in the Trisomy community have had to say goodbye to their little girls in the last couple of days, and devastating doesn't begin to describe it.

I'm not going to lie...this journey is not for the faint of heart.

You learn to love and let go and it never, ever gets any easier.

You get close to families, follow their journey, find hope and light and joy and encouragement.

And then in the blink of an eye something happens...

And you're crying your eyes out in your closet, heart-wrenching sobs because a child who was doing so well is suddenly with Jesus and a friend's arms are empty and her heart is aching.

You know in your heart that heaven is where our children are healed and made whole for eternity, that they are dancing with Jesus and waiting for the day we will be reunited.

But.

The ache is still there.

And though we get pretty good about pushing the fear and the worry behind us, living in the moment and appreciating what we have, it's times like these that remind us...

Our child could be next. 

I hate that this is the case. I hate that I can't make it better for anyone else on this journey. I hate that no one can give us any guarantees. I hate that in the 4 years I have known what a rare trisomy diagnosis is and what it means, I have watched literally dozens and dozens of little ones leave this earth.

It hurts. A lot.

And yet...our lives are richer BECAUSE we are part of this community. The joys and triumphs and milestones--they are all the sweeter because of the difficulties. The friendships and community we've forged are so precious and valuable and LIFE-giving. 

To my friends who are new to this life, to those who have just received a diagnosis for their little ones...I hope seeing posts of loss and sorrow do not cause you too much angst and grief, although it's understandable that they do. I hope you see the hope and the beauty, the joy and the sacredness of this calling we each have, the call to love and care for a vulnerable little one. Because it's there, it truly is! 

Lots of hope. 
Lots of joy. 
So much love. 
So many precious memories and moments.

It's worth it. So very, very worth it.