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.

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.

How Little We Knew!

As we begin a new year and look forward to Verity's 2nd birthday in less than 2 months, I can't help feeling rather sentimental. Three years ago I had no idea what kind of a roller coaster journey lay ahead of us. Two years ago I was pensive and terrified in the final stretch of a precarious pregnancy. One year ago I was astonished and delighted that we were approaching that huge milestone, The First Birthday, which we heard only 5-10% of Trisomy 18 babies ever reached.

I thought my heart was full being the mother of 8 wonderful children. Now? Now it's absolutely overflowing! Getting to be Verity's mommy is icing on the cake of my personal journey in motherhood. I'm so thankful God prepared us to be her special family.

I remember the terrifying days following her confirmed diagnosis halfway through my pregnancy. We thought we would have to bury our baby shortly after her arrival. How little we knew how strong our baby would prove to be!

I remember the secret fears of not knowing how to take care of this different child, even wondering if I could possibly love her as much as my other children. How unexpected the journey of becoming an expert in Verity's care simply because we love her unconditionally!

I remember the dread and anxiety looking at the countless unknowns. The "what ifs" threatened to overtake me and carry me into a sea of depression and despair. How little I fathomed what joy this small but mighty bundle would bring to us all!

Verity Irene is plunging headlong toward her 2nd birthday (Feb. 28). She is not a scary statistic. She is a beautiful, joyful, playful little girl. She completes our family. She touches the hearts of strangers. She has made us all better people simply for being part of our lives. When I was pregnant with her, I read similar testimonies from other special needs families, some of whom have grown very dear to us over the past couple of years as we have gotten involved in online communities. I clung to those words, other people's stories of love and joy and hope. And slowly I began to dare to believe that maybe...just maybe...someday that would be OUR story, too.

And now--it is. It has been all along, really. Perhaps at times we were so busy trying to survive we didn't realize what was happening...the struggles and fears and difficulties only highlighted the beautiful tapestry woven with threads of love and joy and hope.

If you or someone you know has received a scary diagnosis for an unborn or recently born child...please know first of all that you are not alone--you're not alone with this specific diagnosis, and you're not alone in feeling all the strange, unfamiliar, even contradictory emotions that seem to be overtaking your soul. Have courage--dig beyond the statistics and find the families who will become your tribe, those who are already walking the path you've been unceremoniously dumped on.

Most of all, reach out to the One who created you AND your child. Know that He never makes mistakes. There is purpose far beyond what we can see and touch.

And it is GOOD.

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 Other Side of the Coin

Tomorrow is Verity’s first birthday! Tomorrow we celebrate having her with us for a whole year. Other first birthdays have come and gone, but this one—pardon the pun—takes the cake! When we learned Verity’s diagnosis, I thought I would be planning for a funeral. Never did it cross my mind in the weeks following that awful phone call that maybe, just maybe, we would someday be printing invitations and buying streamers and looking at cake ideas for her first birthday party.

There is another side to this coin, however, and I want to share a quick glimpse at the life of another Trisomy 18 girl named Nori. Here she is—isn’t she a doll?

Verity and Nori are birthday buddies! Both girls will turn 1 tomorrow! I’ve only recently begun to get to know Nori’s sweet mama, who lives over a thousand miles away. And though our daughters share a birthday and the same diagnosis, their stories are so incredibly different.

Verity spent 18 days in the NICU. Nori is still waiting to go home!

Verity has had 2 surgeries (tenotomy and g-tube). Nori has had 4, including open heart surgery.

Verity’s biggest problems seem to be GI related. Nori has a trach, has endured chemo, and is now cancer free! (I know, right?! She is INCREDIBLE!)

Two Trisomy 18 families; two very different stories. I am so thankful that sweet Nori is doing all right (although suffering some minor setbacks that keep delaying her from going HOME), but there is no denying that she, her parents, and her siblings have had a much more difficult road than we have traveled with Verity. (To read more, please see the fundraiser page a friend has set up for them.)

But…both girls are alive. They’ve beaten so many odds, and they will celebrate a huge milestone tomorrow.

And that—that is really the other side of the Trisomy 18 coin, the fact that we celebrate what so many cannot.

I can’t deny that as excited as I am to sing “Happy Birthday” to Verity tomorrow (and again at her party on Saturday), there is a tinge of sadness that I just can’t shake. I now know too many mamas who will never get to wish their babes a happy first birthday—or perhaps even another birthday. I know too many mamas who didn’t even get to meet their little ones alive. I ache for the parents who aren't sure if they really made the right decisions, for the siblings who don’t understand why they can’t kiss baby brother or sister one more time.

And honestly? I don't understand it either. Why do our babies live and others don't? 

Sometimes we hear well-intentioned sentiments. 

"She is so loved! That's why she's doing so well." But...other children were (and still are) loved.

"So many people have been praying!" Well, I'm sure people prayed for the children who passed, too. (I myself have prayed fervently for little ones who didn't make it.)

"God has special plans for this girl." Yes, just like He has plans for all children...but some plans clearly include welcoming little ones to heaven before their parents.

Do you see the dilemma? On the one hand, so much to be thankful for, so much joy and hope. On the other hand, such sorrow as I cannot—simply cannot—wrap my head around, for I have not (yet) been called upon to walk that road. (Jesus, be merciful...help me whenever that time must come.)

I suppose that in a sense, I am still living in a cloud of uncertainty much like during the pregnancy with Verity. Tomorrow isn't guaranteed for any of us. Yet with 364 days behind us, life with our little girl is, quite simply, Today. 

Today...I will take care of you as best as I know how.

Today...I will hold you close.

Today...I will thank God for the gift of you.

Today...I will love you with all that I am.

For everything there is a season, and a time for every matter under heaven...Ecclesiastes 3:1

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:24

Living the IF

A year ago I felt the weight of my heavy pregnant body a little bit less than the weight of the uncertainty and dread that had been pressing on me ever since Verity's prenatal diagnosis. As much as I tried to be hopeful and faith-full, the unknown stole so much joy from those final weeks of waiting for the arrival of our sweet baby, a precious little girl whose very existence brought more ambiguity than any other anticipated event of our lives.

At the same time, I couldn't help but be grateful that we did receive Verity's diagnosis early, even though a prenatal diagnosis can sometimes actually be detrimental. The last few months of my pregnancy allowed me to research and prepare myself and my family for some of those "What ifs" that lay ahead of us:

What IF our baby actually lives instead of dies?
What IF we bring her home from the hospital?
What IF we go from parenting 8 healthy kids to adding one more...with special needs?

What in the world would that look like??

Well...what does our life look like now?! Because we are living the IF.

Our baby IS alive. We DID bring her home from the hospital. We now have NINE children...and yes, one of them has special needs!

So what does our life look like?

It looks like bottles and pump parts in and around the sink, waiting to be washed or drip drying on the rack.
It looks like once-unfamiliar equipment (feeding pump, pulse oximeter, suction machine) being part of daily life.
It looks like an impressive binder and filing system to hold never-ending medical paperwork.
It looks like therapy sessions twice a week and specialty appointments several times a month.
It looks like parents falling asleep in the middle of meetings and movies.
It looks like brothers and sisters coming and going, kissing Verity, playing with her, singing to her.
It looks like jumping up and down when Verity gains a few ounces or reaches for a toy.
It looks like cuddle sessions instead of the "shoulds:" I "should" be cleaning; I "should" be working; I "should" be prepping dinner.

It looks like love
and laughter
and living in the moment
and appreciating the little things.

And yes...sometimes it looks like tears
and tantrums
and turmoil
and terrifying moments.

I can't lie: this isn't an easy life. It's not what we would have chosen. But it IS what we choose now, over and over, day after day. "Living the if" has changed our lives for the better. "Living the if" means living in the grace and strength of a God who created Verity perfectly, whose plans and purposes reach far beyond our comfort zone. "Living the if" keeps us humbly walking in the path of Christ, who allowed Himself to be broken and poured out on our behalf.

I suppose it wouldn't be entirely honest to close there, because, as you might imagine, our present day reality doesn't mean that we don't still live with a different set of "What ifs." And the truth is, I still wrestle with the reality that "Living the IF" for our family means something entirely different than many other Trisomy families have experienced. But...for now...I choose to focus on the celebration of life in this, Verity's birthday month, and instead will save that topic for another day.

Christmas Thoughts

Y'all...we are about to celebrate Verity's first Christmas! A year ago, I was "great with child" and full of fear and uncertainty. Would we meet our little girl alive? How long would we have with her? What would her needs be, and how in the world could we take care of her along with 8 other children?

I confess that fear and uncertainty are still very much a part of our daily lives...however, joy and thankfulness are powerfully present as well. This life isn't easy, as you have glimpsed if you've followed our journey any length of time at all. But by God's grace, we are moving forward one step at a time. Our little miracle is just over 2 months away from celebrating her first birthday, a milestone we never would have imagined she would reach based on the information we received at her diagnosis. In 2017, Verity:

• was born without complications and spent her first few minutes outside the womb breathing and crying on her mommy's chest.
• quickly progressed from CPAP to room air to no oxygen support at all in the NICU.
• went home after only 18 days in the NICU.
• began her own growth curve with breast milk via NG tube.
• had corrective measures for both of her clubbed feet, enduring castings, a surgery, and a boots-and-bar regimen.
• had G-tube surgery at 2 months of age and continues to be nourished via G-tube.
• moved with her military family to a new state.
• met with a number of medical specialists, all of whom have been extremely supportive of us in our efforts to help Verity have the best possible quality of life.
• has grown and developed in her own way and in her own time, thrilling and delighting hundreds (maybe thousands) of people around the world who have loved and prayed for her.

What a doll. What a miracle. What a GIFT. This is our Trisomy 18 Song of Triumph, and we will sing it loud for all to hear!

To GOD be the glory...
God, the author of LIFE...
God, the One who gives MEANING to life...
God, the One who chose to enter the human experience by sending Jesus to dwell among us...
Jesus--Immanuel--God with us--who lay down his life for us that we might have the opportunity to choose ETERNAL life.

We--Verity's family--wish you a blessed, merry Christmas. If you do not know Jesus our Savior, we pray that you will seek to know the God who created YOU, who loves YOU and gives meaning and purpose to YOUR life.

"For God so loved the world that He gave His one and only Son, 

that whoever believes in Him shall not perish but have eternal life." John 3:16

Verity's Arrival

February 27 (big sister Kenna's 10th birthday) passed fairly uneventfully...aside from the fact that I had contractions pretty much all day long! Since this had become more common in the previous week or two, I wasn't sure what to make of it, although the contractions were definitely noticeable and more uncomfortable. Many people had prayed on Kenna's behalf that she would not have to share her birthday (she herself was adamant about this), and while I was fairly sure the Lord would grant this request, I did wonder, especially as the evening got underway and it got harder and harder to rest!

Our attempt at a normal bedtime was short-lived. Ted got maybe an hour and a half of sleep before I woke him up and asked him to please wake the girls and Grandma. Our photographer prepared to meet us at the hospital, and I finished packing. (I must say, in retrospect, I did a rather horrible job of packing this time! Ah, well, the important things were included...who needs shampoo anyway?!)

Kenna has no recollection of the two separate conversations she had with her dad about us leaving for the hospital...so...she did not attend Verity's birth after all. Charis, Rhonda, Ted, and I prayed together in the kitchen before we left the house, with Grandma staying behind to hold down the fort. Tobin had awakened during the commotion and hugged us goodbye, but no one else knew we were leaving.

We arrived at the L&D ward at 1am. I was so nervous that we would find out this was a false alarm after all--despite having some pretty painful contractions at home, hardly anything happened during the drive, and the contractions I did have after leaving the house were really not very intense. But I had felt it was time to go, even though there didn't seem to be a clear sign like I had prayed for. Turns out the mama instinct was correct; I was dilated 6cm when we arrived, with my water bag bulging out but still intact.

It was so surreal actually being in labor after waiting and wondering for what seemed like an eternity. The fact that it happened in the middle of the night only added to the dream-like quality of the whole experience. Still, I appreciated the calm and the quiet: peace. Overwhelming peace.

As per my birth plan, we requested an epidural so that in case something happened and Verity ended up in distress, I would be alert for an emergency C-section. We waited what seemed like a very long time for the epidural; it may have been around 2:30am or even 3:00 before it was in. I was afraid that things would progress too fast and it would get to be too late to get one! Thankfully the contractions were so minimally uncomfortable; honestly, it was the easiest labor I've had, other than I was just so tired from being awake all day.

After the epidural was in place, my contractions seemed to slow down. In fact, Ted had time to take a little nap in the rocking chair! It seemed strange to feel so good during labor! The epidural helped, to be sure, but the contractions hadn't been unbearable even before that. The main annoyance, if you will, was that my body would shake uncontrollably during each contraction, even though I wasn't yet transitioning. During this lull, I enjoyed visiting with my nurse and my photographer friend (herself a homeschooling mama of seven beautiful kiddos). Charis calmly worked on a crocheting project. The nurse mentioned that they were wanting to start pitocin, but I asked if we could first break my waters since that has often led to a speedy delivery in the past. Everyone agreed, and so that was the plan of action.

One of the blessings and answers to my prayers for Verity's delivery was that my favorite doctor, Dr. T who had been so proactive on our behalf, was on duty that night. Along with two residents, he was there during the last hour leading up to Verity's delivery. When he checked Verity's position, all of a sudden I felt as if we had entered a twilight zone: no longer was Verity head down, after weeks and weeks of always presenting herself in that position. We all agreed that a vaginal breech delivery was entirely possible; however, a quick ultrasound confirmed that she was actually transverse. Before I could blink, I was being tilted backward with MY head down! And hands were maneuvering my belly as the doctors worked to manually flip Verity into position. My sweet nurse reminded me that God was with us there, which snapped me back to reality a bit, and I began quoting Scripture aloud, any passage that came to mind, hearing her at my shoulder agreeing with my words, which were whispered prayers to keep me from panicking. [I'll list the passages at the end of this post--at least the ones I remember murmuring at the time--in case anyone is interested in reading them. :-) ]

The maneuvering worked, and Dr. T continued with his hands planted firmly on my abdomen to prevent Verity from moving again while my waters were broken. At this point I was at 8 cm, not completely dilated as was originally thought; the bag had bulged through and stretched the cervix to make it seem like I was complete. Verity's station was still fairly high, so we needed some contractions to bring her down and finish dilation. But contractions had pretty much stopped. So they upped my pitocin and sat me more upright to make use of gravity.

For a few minutes, nothing happened, so the doctors stepped out of the room to check on another laboring woman, and after another few minutes, my nurse decided to step out as well, telling me to ring if anything happened. No sooner had she left the room when I felt an enormous wave of a contraction with immediate pressure, so I rang that bell and she hurried back inside! We were ready to have a baby!

Easiest delivery ever from that point on: I pushed carefully a little at a time and there she was, all beautiful and dark-haired and perfect. I got to cuddle her on my chest for a few precious minutes while time stood still and I wept tears of joy unlike any I've shed over my other babies--and I've cried at seeing each precious face, because the miracle of life is something we never get over, nor should we. I watched Ted cut the cord and regretfully agreed after a short while that she needed to go; even love-filled eyes couldn't deny seeing that she was turning gray.

The NICU team was wonderful, and Ted, Charis, and Melissa (our photographer) accompanied Verity from that point. Perhaps I'll ask Charis to write a post about what happened from that point, because my experience was pretty generic post-partum, and who wants to read about that! Verity is the star of this story! But for my mama friends who care about such things, the only difficulty my body had in the aftermath of this particular birth is that my lower abdomen muscles ached in a different way than I've ever felt before, and this puzzled me until the doc reminded me the next morning, "Well, we did turn your baby!" Oh, yes! That did require quite a bit of activity that I wasn't used to, lol.

So, that is the story of Verity Irene's birth, fittingly occurring the same day as the Rare Disease Day that was happening on Capitol Hill.

Welcome, Verity Irene...

Born February 28, 2017, 04:05am

40 weeks, 3 days

5 pounds, 3 ounces, 18 inches long

My labor & delivery verses...in a variety of versions used in my memory efforts over the years:

I love you, O Lord, my strength.
 The Lord is my rock and my fortress and my deliverer,
    my God, my rock, in whom I take refuge,
    my shield, and the horn of my salvation, my stronghold.
 I call upon the Lord, who is worthy to be praised,
    and I am saved from my enemies.
Psalm 18:1-3, ESV

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10, NIV

Fear not, for I have redeemed thee; I have called thee by thy name, thou art mine. When thou passest through the waters, I will be with thee, and through the rivers, they shall not overflow thee, when thou passest through the fire, thou shall not be burned, neither shall the flame kindle upon thee, for I am the Lord thy God, the Holy One. Isaiah 43:1-3, KJV

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:16-18, NIV

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart. Hebrews 12:1-3, NIV

The Lord is my shepherd; I shall not want.
He maketh me to lie down in green pastures: he leadeth me beside the still waters.
He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.
Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.
Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever.
Psalm 23, KJV

Valentine's Day Check-Up

Yesterday we went in for what may very well be Verity's final ultrasound! It's hard to believe we have made it past 38 weeks with this pregnancy. I really am starting to think it would be just like God to have Verity be our "latest" baby and come well past the 40-week mark! (So far that award goes to Tobin, who arrived only 2 days after his due date...most of our babies have been early!)

My mother-in-law, Rhonda, accompanied me to my appointments, and Ted joined us there from work. What a blessing to share the ultrasound time with her this time! My mom got to see Verity in November during our Thanksgiving week ultrasound, Charis has accompanied us a couple of times, and Ted has seen all but one in person.

Verity's heart rate was great, over 150bpm, and as usual she was wiggling all over the place. She is head down, and we got a great look at her little legs, knees and feet (but no pictures) that showed some meat on those little bones! Best of all was the news that she is weighing 5 pounds, 15 ounces, an astonishing amount of weight gain in 4 weeks...last time she was 4 pounds, 1 ounce! This puts her in the 8th percentile, up from the 4th where she was holding pretty steadily over the course of a few months. This also gives her an even better chance of faring well during and after birth. Her big sister Kenna, the earliest of our babies, arrived at 38 weeks and weighed 6 pounds, 5 ounces. It's entirely possible that Verity will outweigh Kenna depending on how much longer she "cooks!" Our doctor seems to think all is going well and reiterated that the nurses are all on alert and ready for our arrival when the time comes.

Over the next couple of days, I have a project in mind: sorting through Rhema's newborn clothes and setting the smallest ones aside for Verity. Confession: these outgrown clothes have remained in bags in our basement because I couldn't muster the strength or energy to go through them, uncertain of whether they would ever be worn by another one of our little ones. But now...today...I feel pretty darn sure that we'll be bringing our girl home from the hospital! It's time to NEST!

Celebrating LIFE

A few weeks back our small group leader approached me to discuss the fact that some ladies in our church were wanting to put together a baby shower to honor Verity's life and to be a blessing to our family. I was so incredibly touched, especially when she asked for my input and acknowledged that no one was quite sure how to go about doing this given our situation.

Mamas in my FB Trisomy community gave some valuable input, which I passed on to Connie, and the ladies did an amazing job of putting together what truly was a celebration full of joy and meaning. Our church family showered us with love and blessings last night, and we are humbled, encouraged, and thankful.

The event was open to husbands as well as wives...I believe this was our first couple's shower, now that I think about it! It was so nice that Ted's mom is also here with us and was able to be a part of the evening. We left our kids at home in the capable care of their teen siblings along with another larger family who joined forces with them for what was, I'm sure, a rowdy and delightful evening for the kids as well, lol.

The potluck dinner was wonderful with plenty of good fellowship and fun shower games to keep us engaged. As I looked around the room at the nearly 3 dozen people who had gathered with us in person, I was overwhelmed not only at who was there attending our celebration in person, but also at the many who have expressed their love and support and were not able to be physically present, whether from our own small church community or from vast distances.

Our pastor shared some thoughts from Psalm 139, a beautiful and profound message. He has given me permission to share publicly, which I will do in a separate post at another time. Then we closed the evening singing "10,000 Reasons," "Blessed Be the Name," and "Great Is Thy Faithfulness." It was a beautiful and precious time with our brothers and sisters in Christ.

At home, Ted and I had some quiet moments reading the beautiful messages folks had written for us. The gift card and money tree is a blessing that will keep on giving as we reserve the resources and wait to see what Verity will need. And our freezer already has a stash of meals that will be easy to prepare when things start happening and Mom isn't home to oversee the menu plan.

I confess I was uncertain going into the event whether I would end up being emotional, but honestly, it was truly such a celebration with so many dear friends that there was no sadness at all, only joy and thankfulness in shared acknowledgement of precious truths...

"Whatever may pass and whatever lies before me...let me be singing when the evening comes...
Bless the Lord, oh my soul, oh my soul,
Worship His holy name;
Sing like never before, oh my soul, worship His holy name."

"Blessed be your name when the sun's shining down on me, when the world's all as it should be,
Blessed be your name.
Blessed be your name on the road marked with suffering, though there's pain in the offering,
Blessed be your name.
Every blessing you pour out I'll turn back to praise;
When the darkness closes in, Lord, still I will say: 'Blessed be the name of the Lord...'"

"Pardon for sin and a peace that endureth; Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow...blessings all mine, with ten thousand beside.
Great is Thy faithfulness, great is Thy faithfulness, morning by morning new mercies I see.
All I have needed Thy hand hath provided; great is Thy faithfulness, Lord, unto me."

Oh, yes! One other thing I think is worthy of reporting...Ted, his mom, and I were all approached at various times and told in no uncertain terms that I was NOT to write thank-you notes, that we had enough going on in our lives and no one wanted me to have additional stress! So sweet! But my mama raised me right, so I WILL write a note for Connie to put in the church bulletin...that was deemed acceptable, lol. I love the hearts of these men and women who didn't even want their names on the money tree envelopes.