Autumn 2020 in Photos

Here are some representative photos from September through November...starting from the most recent and working backward because that's apparently how my phone and computer are working today, lol. Enjoy!!

Having a BALL in our swimming pool
ball pit that we keep in the basement!

Happy Thanksgiving! 

Look how open and flat her hand is!!!
 Remember her clenched fists at birth?!

Practicing sitting...we still can't leave
her because she is totally unpredictable,
 but she's getting there!

Resting before our big day of back-to-back
 appointments (details in previous blog post).

Our little Trisomy Rule Breaker
 enjoys playing in her perimobile device!

Snuggle time with Grandma J

Daddy took the kids to the pumpkin patch.
The corn pit was a favorite place for Verity!

This is the first day with our new perimobile device!
 Many people helped us out with our fundraiser.

At preschool, Verity has the opportunity
 to use lots of cool toys.

More practice with sitting unassisted...
this little piano is a huge motivator,
as Verity enjoys the sounds she can make on it.

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.

Let Freedom Ring!

This is an Independence Day post, but I will start with a flashback to Christmas vacation when I was tucking my 3 little boys in bed. Lucan, my 8yo, was talking about something (I don't recall what exactly) that would happen in the future, and he was rattling off the ages he and his siblings would be at the time. His words were matter of fact: "I'll be 12, Zaden will be 10, Seanin will be 8, Rhema will be 6, and Verity will be 4, if she's still alive."

If she's still alive?!?!

My breath caught in my throat, and a knot formed in my stomach.

I don't remember how that conversation ended, whether I said anything in particular or not. I only remember standing outside of the bedroom after the door was closed and sobbing my eyes out.

Two months later, on February 28, 2018, Verity turned one year old. It was a huge milestone. Statistics we had heard since Verity was in utero indicated if she reached that one-year birthday, she would be one of the 5-10% who did.

The very next morning, March 1, Lucan ran upstairs to find his baby sister. When he saw her, his eyes grew round, and he shouted with excitement, "She's still alive!!!"

The weight of his surprise settled on my shoulders with a heavy realization: my sweet, tenderhearted son thought Verity would succumb to statistics now that her birthday was over.

And it hit me that twice now, my son had voiced the uncertainty of the burden under which we all were living, even if we didn't talk about it or acknowledge it...even if we didn't realize it was there to begin with.

Verity's birthday party came and went. Appointments, therapies, sleepless nights, little developments and progress, an overnight stay in the hospital, a bit of regression, more appointments and therapies, another hospital admission, recovery, more appointments and therapies, more developments...days slipped into weeks, which turned into months. And at some point in the middle of all this daily LIFE, I experienced a startling realization.

We had spent pretty much all of Verity's first year of life holding our breath, waiting...in a sense...to see if she would die.

Does that sound absolutely awful? I was heartbroken when I realized how true it was. We had said goodbye to more little ones in our Trisomy community than I could have imagined possible. Some of our closest little friends were in and out of the hospital, some fighting for their lives and making miraculous recoveries, while others fought valiantly only to slip away.

The unspoken question in our house for so many months--How long would Verity be with us?--somehow evaporated. We submitted requests for therapeutic and adaptive equipment. We registered for the Support Organization for Trisomy family conference. We stopped subconsciously wondering whether our baby would leave us and simply enjoyed living with her.

Do you know what that is, friends?

Freedom.

Freedom from fear and worry.
Freedom from uncertainty.
Freedom from depression and anxiety.
Freedom to savor and relish the little things.
Freedom from expectations.
Freedom to simply...be.

I'd be lying if I said we never feel fear creeping in. (A bout with aspiration pneumonia terrified me as I watched my baby struggle to breathe.) And I'd be misleading you if I said I never deal with uncertainty, or if I said I have managed to perfectly enjoy and cherish Every Single Moment instead of being concerned with what's for dinner or whether the toilets have been cleaned recently.

But overall? Our lives are characterized by far more joy than nail-biting fear. This is a testimony to the grace of God in our lives, to the growth He has allowed us to experience because of the sweet and precious gift He gave us in Verity.

I've told friends that I feel as though we have come out of a long, dark tunnel, that we are finally able to see the light and the beauty every day even though some days are still really hard.

And that to me is FREEDOM.

The Spirit of the Sovereign Lord is on me,

    because the Lord has anointed me

    to proclaim good news to the poor.

He has sent me to bind up the brokenhearted,

    to proclaim freedom for the captives

    and release from darkness for the prisoners,

  to proclaim the year of the Lord’s favor

    and the day of vengeance of our God,

to comfort all who mourn,

     and provide for those who grieve in Zion—

to bestow on them a crown of beauty

    instead of ashes,

the oil of joy

    instead of mourning,

and a garment of praise

    instead of a spirit of despair.

They will be called oaks of righteousness,

    a planting of the Lord

    for the display of his splendor.

--Isaiah 61:1-3

The Answer to "Does It Get Better?"

About 13 months ago I posted the following in the Rare Trisomy Parents group:

"I don't even know how to phrase this question. Verity is closing in on 3 months (on the 28th). That's awesome, of course. But her short life has been filled with things that understandably make her mad, uncomfortable, or both. The latest is the switch from casts to boots and bar, but it seems there has always been something. It's so rare that she's awake and not fussing or screaming. There are times, of course, when she seems reasonably content. But in general, when I think of her time since birth, it seems overall weighted toward the not-so-happy.

Does it get better??? Please tell me some day we will have some tangible reward in the form of positive responses, anything to let us know she is happy to be alive and knows she is loved. Life with a newborn is hard, I know, but my other babies were at least smiling and cooing and making faces back at us by this age. Obviously things are different with Verity, but it would give me something to hold onto and look forward to if I could tell myself something along the lines of, 'In another month or so she will be smiling,' or something like that.

I don't know if my question has to do with developmental milestones you've experienced or if I just need to hear that someday, life is going to be at least a little happier, a little less stressful than it is now. I don't regret the interventions we've done for Verity, not in the least. But...they've certainly been challenging. I'm exhausted, and the feeling of being overwhelmed only gets more powerful as time goes on.

Thanks for listening."

Oh. Oh my. Thirteen months is a long time, but how well I remember my emotional and mental state when I composed that plea for help. This afternoon I spent some time reviewing the answers posted in response to my question of May 17, 2017. I remember clinging to the sage advice and photos of smiling children that came in the form of dozens of comments. Many of those wise, sweet mamas are now close friends with whom I share daily life as we chat back and forth online. 

Little did we know back then that we were about a month away from seeing Verity smile for the first time, about 6 weeks away from hearing her laugh. Little did we know that though it would take many more months, we would start getting some stretches of sleep, even full nights (thanks to nursing help!). Little did we know we would see Verity--a child the head neonatologist suggested would lead a "futile life"--smile, that we would hear her babble and giggle multiple times a day. Little did we know she would light up when seeing Daddy come home from work every evening. 

So...does it get better?

Oh, yes. Yes, it does!!!

This morning, going on about 1 1/2 hours of sleep all night, Verity just cooed and smiled and giggled. I'm not sure how she survives on such a small amount of sleep, but she is certainly a happy girl much of the time, and when she's not, it is much easier for us to figure out what is bothering her. As I finish typing this post, it is clear that Verity is overly tired and ready for a nap--her left leg is kicking, and she is shaking her head back and forth with her eyes rolling back in her head. These are her sleepy cues. Now and then she gives a disgruntled squeal, as if to say, "I know I need to sleep, but I just can't get there yet." And yet...even so...she smiles! My heart is full.

Another time I will post about some of Verity's developmental progress, but today...today I remember how heartbroken I was at the seemingly constant distress our baby was experiencing a year ago, and all I can think about is how grateful I am for simply seeing her smile. 

A Year of Firsts

It's been quite a year. Though we've experienced many firsts in our years of parenting, our adventure with Verity has found us swinging between typical baby firsts on the one hand and...on the other hand...utterly foreign firsts which have somehow turned into our new normal. And while we have yet to see Verity reach certain milestones that our other babies may have reached or even surpassed by their first birthdays, the fact remains: we cherish and treasure each FIRST from this past year.

The first time we saw our tiny babe and heard her little cry...

The first time one of our babies went from birthing room to NICU...

The first moment her brothers and sisters met Verity...

Our first experience with a feeding tube...

Our first night at home with a myriad of cords and machines...

Our first trip with Verity to the ER...

Verity's first church service (which also happened to be her dedication)...

Her first casts...

Her first Easter...

Her first surgery...

Her first GI tests...

Her first boots and bar (soon followed by her first therapy sessions)...

Her first smiles (at 4 months old)...

Her first Fourth of July...

Her first move...

Her first Thanksgiving...

Her first sleep study...

Her first Christmas...

Her first New Year...

Her first Valentine's Day...

And soon...very soon...on February 28, her very first birthday...

Verity, you are the FIRST baby we have had the privilege of experiencing such a roller coaster of a first year with! You have taught us so much, sweet girl. I know I'm not the first person to say this, but you have touched more lives in your short time on earth than you can ever know. We will treasure each and every FIRST the Lord our God gives us with you.

We love because He first loved us...1 John 4:19.