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!

From Diagnosis to Delivery - A Resource for Moms with a Prenatal Diagnosis

It's been just over 4 years, but I well remember that difficult season of life: getting a phone call from my doctor and learning the baby girl growing inside me had what was considered a life-threatening diagnosis (Edwards Syndrome, or Trisomy 18). The following days and weeks were a living nightmare. My husband and I prepared for our baby's burial, and I was pretty much a weepy, emotional mess. Thank GOD for online connections! After about a month or so of feeling overwhelmed by negative information, we were introduced to online resources that actually showed REAL families living with children who had the same diagnosis. My eyes were opened to the positive stories of hope, and I began to turn my heart toward the idea of a different outcome than I had been led to believe initially. 

Of course, this also meant I had a whole different set of questions to address! The learning curve was steep, but as I look back, I can see how incredibly far we have come. Now our Verity is almost 4 years old, and our family absolutely adores her. I just cannot imagine life without her! But I will confess I was terrified to be the mother of a special needs child, especially when I already felt overwhelmed being the mother of 8 other children. 

From the moment of our diagnosis to the beautiful experience of Verity's delivery, my pregnancy was an emotional roller coaster. And beyond delivery came more learning. I won't say it's an easy road, but I wouldn't have it any other way. And because of the JOY and HOPE we have as a family (which ultimately comes from Jesus), I am now in a place where I am able to offer a bit of wisdom and experience as a resource for moms who have a prenatal diagnosis and are drowning in a sea of emotions.

We have a new private support group for those moms! I also have a free guide, From Diagnosis to Delivery. Please help spread the word! This is a journey best traveled with loads of support!

The Good, the Bad, and the Ugly

Many good things are happening in Verity's little corner of the world! Let's celebrate!

PRESCHOOL! Verity gets to ride the bus Monday - Thursday and join her little classmates for morning preschool. We are so thankful she can do this in person, as we have seen good things happening for her development. She does get tuckered out and once even fell asleep in class, ha! But the experiences she is having and interaction with her teachers and classmates are all having such a positive effect on our girl. We are grateful for our nurses who accompany her there and back and give us great reports and photos!! 

CRAWLER--after sitting in the NuMotion office for NINE MONTHS due to insurance issues (hmm, enough time to grow a baby), a beautiful Creepster Crawler is finally OURS! We use it to help Verity do some weight bearing in the quad position. She has gone from utter dislike to tolerating and even seeming to "enjoy" (that may be a little strong) the device. The ultimate goal, of course, is to help her understand that SHE CAN move herself! We are still working on sitting up on our own as well. I don't yet have a picture of her in the crawler, but here's a photo of her sitting without our support doing one of her favorite things: playing her little piano! We do have to watch her carefully, as she can hurl herself out of the chair unexpectedly, but it's so great to see her making these strides. 

Other developmental things:

• Blowing bubbles...spit bubbles, that is!
• Smiling and laughing spontaneously
• Interacting with her toys on her own
• Responding to her siblings and enjoying play time
• Surpassing 24 pounds! She's still teeny, but man, is she getting SOLID! She's so strong and healthy!
• Using her core more and more...she's close to sitting up on her own and COULD if she wanted to!

Unfortunately, we must deal with some bad things as well...mostly recurring UTIs for our poor girl this year. We are treating the 6th one! Different bacteria have grown out at different times. We've done some testing (VCUG and abdominal x-rays, plus her regular renal ultrasound). She still has kidney reflux on her right side, but nothing that suggests we need to do any kind of surgery or procedure. After this current round of antibiotics, she will do 2 months of prophylactics (low dose of preventative antibiotics). And I plan to get pretty aggressive with our home treatment/preventative plans as well.

And the ugly?

Well, I probably don't have to tell you the ugly part. Our nation is deeply divided. I don't even recognize this country anymore. Truthfully, I've blocked out many of the things that rile me up, choosing to focus on what needs my immediate time and attention. That doesn't mean I don't pray desperately for our nation, for the leaders current and future, and for the citizens of this country. 

It DOES mean I soak up all I can from life with Verity...

All the snuggles. (She's often rather affectionate!! We take it in when we can, because it doesn't last long!)

All the love.

All the laughter.

All the sweet innocence of a precious girl who is sheltered from the brutal realities of a sinful, fallen world.

2020 Hindsight

My Facebook memories today showed me a rather raw, lengthy, "how I'm REALLY doing" post from 3 years ago. Verity was just about 3 months old, and while we had adapted for the most part into our "new normal," clearly our life was not easy. In fact, as I read over the words of that post, my 2020 heart went out to my 2017 self.

Oh. My. Goodness.

How did we survive those early months? That first year?!

If only I had known back then where we'd be in 3 years. It would have been so incredibly encouraging to get a glimpse of our family now. If I could have time traveled from then to now, I would have seen the following:

• First and foremost, Verity is ALIVE and THRIVING! She is living her best life, surrounded by so many people who love her and help her achieve more than we could have imagined when she was a tiny, unhappy baby.
• Also important: Verity now sleeps! Through the night more often than not! Her CPAP mask and machine have been a game-changer for all of us.
• We have HELP! Wonderful nurses who have become like family. (I continue to hear horror stories from other medical moms...but praise the Lord, we have been unbelievably blessed.)
• Our family no longer is moving from place to place with the military. Ted is retired, and we are homeowners living in a dream house on 3 acres of wooded property.
• My other kids are thriving. Not that we haven't faced challenges--some of which have been incredibly painful and significant. But by God's lovingkindness, our kids are growing in the grace and knowledge of the Lord Jesus Christ, to whom we cling daily for new mercies and strength every day.
• I no longer feel anxious or depressed, and I don't even remember the last panic attack I had. (Though medicinal options were a possibility...I found significant help with some natural solutions, and I'm so very grateful for what I learned during those dark, difficult days.)
• I feel closer than ever to my husband and to my Savior. (This. Is. EVERYTHING. There was a time I feared for my marriage and even my own self. It's a story for another day, perhaps...)

Again...I'm not saying that life is perfect. I AM saying I am joy-filled, content, and full of hope for the future. And since mamas usually set the tone for the family, I think it's fair to say the dynamics of our household are generally much more positive and far less stressful than they were 3 years ago.

I know it's not for us to see the future...but oh, how glad I am for the ability to look back on the past from wherever we are in the present. Seeing how circumstances change over the course of time is such a help for framing our responses to circumstances that seem endless and unchanging...

Father God, thank you that YOU are unchanging! Thank you that your love never fails. Thank you for your purposes, which are good and eternal. May we be lights, shining for you regardless of whatever we are facing Today. Jesus, you are the same yesterday, today, and forever! Praise you!

Trisomy 18 Awareness Day...in the Midst of a Pandemic

March 18, 2016. 
I had never heard of Trisomy 18, nor had anyone else in my family or circle of friends, and while I was somewhat familiar with Down Syndrome, Edwards Syndrome was certainly not on my radar. (Nor, I might add, was having another baby.) On this day, I was likely homeschooling 7 of my kids while chasing baby Rhema around the house, trying to keep her out of mischief.

March 18, 2017.
Verity Irene was a tiny little mite who had been home from the hospital less than 24 hours after spending her first 17 days of life in the NICU. She had an NG tube she managed to dislodge a few hours after this photo, resulting in a frantic trip to the ER that night. Good grief. We hadn't even made it a whole day and already there was chaos! How in the world were we going to manage caring for this fragile, precious little girl AND keep up with our 8 other kids?!

March 18, 2018.
Verity Irene passed a huge milestone: she turned ONE YEAR OLD! Statistics had told us only 5-10% of Trisomy 18 children reached their first birthday. I'm thinking those are old statistics...but regardless, who cares?! Does this look like the face of a girl who gives a flying fart what statistics say?!

March 18, 2019.
Verity has now passed her 2nd birthday. She's no longer a tiny, fragile little baby, though she is small for her age. She is developing at her own pace, and we cheer at her every accomplishment. The world might not award much significance to her achievements--or even to her very life--but we know without a doubt that she is a gift from God. She enriches our lives and brings us joy in a way only she can.

March 18, 2020.
Verity Irene, like ALL of our Trisomy friends, is clearly a Trisomy RULE BREAKER!! At 3 years old, she has blessed our family and a growing circle of friends just by being who she is, the unique person God created  her to be.

It is a strange time we live in to be sure. As I type this post, Trisomy Awareness Month has been overshadowed by COVID-19. I am not fearful, per se, of the virus invading our home, although I acknowledge it could definitely happen. I choose not to live in fear, but we are definitely taking precautions. Of course, some of those are not of our own design, as schools have shut down, my oldest daughter's university campus is closed for the year, churches have switched to livestreaming, appointments are pushed farther down the calendar, and so on.

But here's the thing on my mind during today, my fourth Trisomy 18 Awareness Day: IF my child gets sick (whether due to COVID-19 or another illness), and IF we need to get her into the hospital...WHAT IF the hospitals are overrun? What if by the time we get triaged, there aren't enough beds or equipment for what my special girl needs?

And even if it isn't Verity, WHAT IF this happens to our little Trisomy warrior and princess friends??

WHAT IF doctors find themselves having to choose WHO gets life-supporting equipment, time, effort, and resources?

What will happen to those society has already labeled "incompatible with life?"

THIS is why I think Trisomy Awareness Month is important to talk about, even though our newsfeed is already saturated with articles about the virus, the economics, the responses, and whether what we're doing is enough or is overkill.

Wait. "Even though??" No, ESPECIALLY since we are in the middle of a pandemic! This is ESPECIALLY why I think bringing awareness to some of our most vulnerable citizens is important.

And so here I am, standing in my little corner, washing my hands and keeping my family at home, shouting from my computer.

Please...please. Please think of people like my precious Verity, like her friends, and like their grandparents or others who are especially vulnerable. Please don't scoff at recommendations or skip out on washing your hands.

Let's get through this together, OK?

A Year in a Post

Wow. It's been over 13 months since I wrote a post on this blog! How easy it is to pop a photo or video on Facebook or Instagram and share a slice of life. And yet...how fleeting it is. I miss journaling about the intricate details of our life. I miss being more thoughtful and processing precious moments.

How has it been a year since we celebrated Verity's 2nd birthday?! This evening, on the eve of her 3rd birthday, I decided to dust off the cobwebs from this blog and look back over the past 12-ish months to see how far we've come! Ready?! Here we go!

January - February 2019
Verity got 2 piggie tails for the first time! Finally enough hair! Also a new set of AFOs to help hold her feet in a flexed position following her tenotomy surgery in November 2018, after which she wore casts for several weeks. These AFOs were stinkin' cute, but unfortunately not very functional. We went back multiple times to make tweaks, and at one point we had 3 therapists involved with the orthotics guy, who is a genuinely patient and good man and has worked tirelessly with us to get things right! The third pic below shows Verity the day of her bronchoscopy, a sedated procedure which allowed the ENT and pulmonologist a good look at Verity's airway and lung "juices." We learned that Verity's anatomy was not causing her OSA (obstructive sleep apnea), i.e. the ENT did not need to remove tonsils or adenoids. We also learned that while Verity still had problems with emesis, she was NOT aspirating into her lungs. Hooray! But boo...Verity did have to start prophylactic antibiotics after having a third UTI in several months.

2ND BIRTHDAY! February 28, 2019
A celebration with our church family after the service. Our little unicorn got a special handmade unicorn!

March, April, May 2019
First haircut, ball pit (we graduated from a cardboard box to a plastic swimming pool that we can pull out and play with in the house), therapies, park days, Easter (and naps), getting arm braces to help with weight bearing, and another sleep study, which resulted in us getting a CPAP set-up for Verity in early summer. It has made SUCH a difference for her (and our!) quality of sleep!! We got another good report from the cardiologist, who only sees Verity once a year now.

JUNE 2019
We had a quick road trip to Iowa to drop off our son for a mission-type camp and then visit friends for a few days. Back home, we saw Verity's urologist for a check-up after her regular abdominal scan (which looked fabulous), and he stopped the antibiotics. Hooray! The photos below are a few of my favorite pics from our summer photo shoot with Melissa Pennington, which took place in Iowa:

JULY - SEPTEMBER 2019
Honestly, I don't remember a lot of detail from this time period, mostly because the property management agency managing the house we were renting informed us that, despite telling us less than 24 hours earlier we could renew our lease, instead served us a 30-day notice. Long story short, we busted our tails to get out of that house and into a God-provided dream home in the woods! What could have been an incredibly difficult ordeal for our big family turned out to be an opportunity to put roots down in a location we deeply love (Colorado). Verity was blissfully oblivious to our stress, as you can see in these random photos from this time period...others shown are big brother Tobin (helping Verity fold her hands during prayer time) and our sweet T18 friend Ember, who came through our neck of the woods over Labor Day weekend!

OCTOBER - NOVEMBER 2019
Visit from Grandma and Grandpa K in October...we enjoyed a day at the pumpkin patch (pictured: Verity rolling in the corn!) before the first snowfall two days later! We started the process of learning what our options are for preschool and therapies once Verity turns 3. The picture of Verity and me in purple was taken during an initial evaluation with the Child Find coordinator in our school district. (We wore purple...despite our smiles, we remember and honor our friend Beckett Hope, who unexpectedly went to meet Jesus in early November.) Verity is shown next in her CPAP mask at night, with a little silk sleeping cap made by one of her nurses since Verity had rubbed a bald spot on the right side of her head (combo of preferring to sleep on her right side + CPAP mask). The bald spot is still there, but smaller, and not nearly as noticeable! Another big event for our family: Verity's daddy retired from the Air Force after 22+ years of service! Having been told that in order to stay on active duty status, we would have to relocate our family, my husband decided enough was enough. It's been a good run; we are proud to have served our family; but it's time to grow some roots! Verity was a huge part of that decision. She is stable with caregivers, therapists, and specialists who know her history and are invested in her well-being. Additionally, we have kids graduating from high school who have been dragged around the world their whole lives, and we are thankful we can give them a place to truly, finally, call HOME. Spending Thanksgiving with all our Colorado family was especially sweet--our first Thanksgiving in our new home, with Ted officially retired. God is good.

DECEMBER 2019 - PRESENT
The ponytail photo I thought was a fun comparison to the first one of this massive post with her two teeny ponies. She's grown a bit, and so has her hair!! Christmas was so magical this year...Verity really engages more with her surroundings, and she stared at the Christmas lights, absolutely mesmerized. When lying on the floor near the tree, she managed to scoot and wiggle her way underneath the branches, where she could play with the lights and tree itself. The other pictures are a slice of life...she's not fond of therapy, but she does occasionally bear some weight on her legs! She isn't yet sitting up completely by herself for more than 30-60 seconds at a time, but we know she COULD if she WANTED to! She isn't officially crawling, but she can maneuver and roll around. She has a Kid Walk on loan, which allows us to get her standing in her AFOs, and then she is free to make it move. (I'll try to get a video, but that will have to be posted on Facebook.) I know there were a lot of appointments the latter part of 2019 as we crammed things in before Ted went off active-duty status. Nothing major happened or changed, though we did start patching Verity's right eye for longer periods. (We started doing that in May when we noticed her left eye getting a bit lazy.) She continues to grow at her own pace, finally breaking past 20 pounds and measuring about 32 inches. We continue to work at increasing her G-tube feeds slowly.

Without a doubt, our girl is living her best life now! Lord willing, I will chronicle the details of this year's adventures here on our blog more faithfully so we can have concrete details to refer to in the future when today's memories grow fuzzy. Meanwhile...I think it's telling that I did set aside a medium which provided such needed outlet during a traumatic time--immediately after our diagnosis through the steep learning curve of the months that followed. We got caught up in the daily routines of life...in fact, we've taken our life for granted, something I swore I wouldn't do. Oh, we have had harsh reminders, to be sure. More little ones went to heaven last year--for me personally, the losses of Kace and Beckett were probably the most difficult, but it's NEVER easy reading about another child with a Trisomy condition who leaves parents, siblings, and friends behind. I always squeeze Verity tightly, even when she wants to wiggle away from me. But then more time slips past, and I lapse into the ins and outs of our busy life. Oldest daughter is getting married this summer; oldest son is graduating from high school. Our 4th child became a teenager today, and my little ones...aren't quite so little anymore.

I guess it's all I can do to cherish what I can, when I can.