She is THREE!!!

We had a wonderful birthday celebration on February 28, 2020, rejoicing in the THREE years God has given us with Verity Irene! We had an open house celebration, which...in hindsight...probably wouldn't have happened if we had known we'd be under Coronavirus quarantine-type measures shortly afterward. But praise God, all our friends and we are still healthy, and so we are grateful that we had the opportunity to celebrate with friends and family on Verity's special day! Verity wore 2 different party dresses after "anointing" one of them...so much for trying a taste of her birthday cake?! Oral eating may never be a thing for our girl, but we are so grateful she is HEALTHY and HAPPY and that we get to share life with her, because she is most definitely

Compatible

with

LIFE!!!

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. 

Birthday Bliss

Where does the time go?! It's been over a month since we had Verity's birthday party (theme: "Joy comes in the morning"), but I still smile in delight when I think about that special day. Out-of-town guests included my parents and two dear friends who flew to Colorado to spend some time with us and help prepare for the part. On party day, the weather was beautiful--sunny and warm--and we welcomed dozens of friends and loved ones who chose to spend part of their weekend celebrating this milestone with us. It was so precious to visit with everyone and to testify to God's faithfulness in this journey. 

We don't have any way of knowing how many more birthdays we will be able to celebrate with Verity, but somehow, now that we've passed the One Year Milestone, it seems as if we've let out a collective sigh of relief. We don't take for granted the time we have with her, but neither are we anxious about impending doom, a feeling that weighed us down for much of the past year. We know with Trisomy 18 we will never be completely free of a hovering "what if," but Lord willing, we are learning to treasure the moments we do have--not only with Verity, but with each of our children, for we know that our lives are but a mist in light of eternity. May we rise each morning with joy in our hearts no matter the circumstances.

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

Happy Half-Birthday, Verity!

August 28, 2017

Our little Verity celebrated her HALF BIRTHDAY! What an amazing milestone. She continues to write her very own special story, as we showed on her cake: a half cake for her half birthday, made (of course!) with love by big sister Charis. Verity even got to taste some frosting, her first taste of something other than breast milk!

We love you, sweet Verity. We look forward to seeing the next chapter in your story!