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.

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.

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. 

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

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.

Photos of Post-Birth Assessments & NICU

Verity's Birth Story in Photos

Special thanks to my sweet friend Melissa of Melissa Pennington Photography 

for sharing her artistic talents with our family as a blessing to us...

and to all those who share in the joy of Verity's birth.