Mary's Prenatal Diagnosis

Christmas 2016 was not the most joyous in my collection of yuletide memories. I was "great with child," but even more burdensome than my cumbersome belly was the weight of anxiety heavy on my heart and mind. We were two months away from our due date with Verity (FT18), and though I had learned much in the couple of months since our diagnosis, I felt I had absolutely no idea what to expect in the days and weeks ahead of us.

This year, we are grateful and blessed to be celebrating our 4th Christmas with Verity Irene. And while our everyday life now is characterized by an unexpected sense of "normalcy," I will never forget the uncertainty and angst that blanketed our holidays that year.

I'm sure Mary felt those emotions as well! She had a "prenatal diagnosis," if you will--it was revealed to her that she would carry a special child, too! Can you just imagine the uncertainty SHE felt?! Where and when would she deliver her baby? What would the outcome be of a pregnancy that from the outside looked to be illegitimate? How would she attend to the special needs of a child who would be like no other?

God's heavenly purposes are carried out in each and every individual, including the precious babies who have an "anomaly." It is true that some are called to heaven before even taking a breath on earth. And it is true that some get to experience life only for a short time. Our thoughts and prayers are with those families who are mourning and missing those babies. And we continue to pray for the ones who are still growing and for the mamas carrying them, waiting for the next chapter in their own lives to unfold.

From the Jacobson family to all of you--I wish you a merry Christmas. May you savor the quietness of the season and experience true rest...may you know the grace and peace that only comes from the real reason for the season.

P.S. If you or someone you know has received a prenatal diagnosis, I'd love to offer encouragement and support. 

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!

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.

Where's the Hope?

On Thursday I checked our mail for the first time in a few days and found a sweet package for Verity. I love the message from my friends at Hope for Trisomy*. These tangible gifts of love and support brightened my day. (Thank you, Erin!!!)

On Friday I learned that Karson, a sweet, beautiful, recently-turned-five-year-old girl with Trisomy 18, went to be with Jesus. I had gone to bed praying for her after seeing her mama's frantic post about a last-ditch effort to save Karson with ECMO. It didn't work.

Where's the hope in that?

This jolt to the Trisomy community reminded me of another recent bitter loss. On the 4th of July I saw photos of smiling Maddy radiating sunshine in her red-white-and-blue, and the next day she was gone. Just...gone.

Where's the hope in that?

My sweet friend Kirsten was forced to say goodbye to Heath, a special needs boy who left her womb early to join brother Gavin (who had Trisomy 18) in heaven.

Losing two special boys back to back. Where's the hope in that?

Fernando went to heaven on Good Friday, just before getting to celebrate his 4th birthday. He left behind loving parents and a proud big brother who wanted to tell his new class last week all about how special his brother in heaven is.

A grieving family left with only memories. Where's the hope in that?

As I sit reflecting on what is happening in our little Trisomy world, I ponder and pray for families who are facing chemo...getting tests done and waiting for answers...preparing for open heart surgery...caring for their little ones through sicknesses at home and in the hospital. (We ourselves are on the tail end of a fight with aspiration pneumonia that landed Verity in the hospital for a brief stay.)

In the midst of it all...in the midst of tests and sicknesses and therapies and surgeries...we hope.

Hope for Trisomy? Yes. Yes, there is.

Our own Trisomy journey has taught us that hope looks different at various points along the way. During pregnancy, I hoped I would meet Verity alive. Now, 18 months later, we have hope that someday Verity will sit up by herself, move herself around (whatever that looks like), and communicate with us (whatever that looks or sounds like).

We have hope that we will have many more experiences with our girl this side of heaven.

And yes...even though we don't really like to think about it...our hearts still hold onto the truth that ultimately, we DO have the hope of heaven awaiting us, an eternity in which Verity and her Trisomy brothers and sisters will laugh, sing, dance, and play without hindrance.

I can't pretend to know how it feels to lose my child. I only know how hard it hits me, every time it happens, even though in most cases I've never met the family in person. But the death of a Trisomy child affects everyone in the community. It's all too easy to put ourselves in the place of the grieving parent, because it's something we've all imagined happening, whether we admit it to others or not. But does the threat of death remove all hope in life?

What about this? Does the reality of a difficult life remove hope FOR life?

It's worth pondering. I remember the point during my pregnancy when I realized it was time to stop preparing for Verity to die and start preparing for her to LIVE. And I had to face the fact that her LIVING would look much different than any of our other children's lives.

Where's the hope in that?

Where's the hope?

I'll tell you. I see hope every day. I see it in the smile of a little girl who didn't smile for months. I see it in the giggles and grins she now gives her brothers and sisters. I see it all over her face when her daddy comes home and sings her special song. I see it in the twinkle in her eyes when she pushes against me wanting to be rocked. I see it in the kicking of her legs, the workings of her fingers, hands that used to be clenched so tightly. I see hope in motion as Verity rolls herself and works hard during therapy, doing things we never dreamed she could do a year ago.

I see hope in the form of a wheelchair that will grow with her. I see hope in the form of a committed family chipping in to make sure Verity has what she needs when she needs it. I see hope in the love and care her nurses have for her as they cheer her on each day and night they spend with her. I see hope in a medical community at large that is finally starting to understand the potential our kids have to grow and thrive with proper interventions.

I see hope everywhere Verity's life shines.

And it's a beautiful thing.

"...and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us." --Romans 5:2b-5

*Hope for Trisomy's Addy Grace gift is inspired by the life of Addalyn Grace, who lived for 26 months with Trisomy 18. Sweet Addy was one of the "older" children I connected with through my newfound online community. Her mom, Erin, did a special post every day in March (Trisomy Awareness Month), which I looked forward to every day since at the time I was in the NICU with our newborn Verity. Erin's love for her only daughter was so evident...even more, her love for Jesus shone in every post. My heart broke when Addy unexpectedly went to heaven. Through the heartbreak, Erin and Jay continue to express the hope found only in Jesus Christ. They continue to be active in the Trisomy community and have touched far more lives than they will ever know.

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. 

Update: Spring Appointments

Recent posts have detailed the couple of respiratory illnesses that Verity had in March and April, so now it's time for a general update on the slew of other appointments we've had over the past few months! October was our busy month in the fall as the referrals finally went through and we started seeing her specialty providers, and April of course was the 6-month mark for follow-up. So here is the list of what all we've been up to!

March 22: Pulmonology
The pulmonology follow-up was scheduled even before Verity's first illness struck, but it was timed well as she had been out of the hospital about 10 days or so. At that time her lungs sounded amazingly good, and since we had never had any lung issues before, the doctor said she would leave it up to the Sleep Clinic doctor as to whether or not she would continue to follow Verity. Of course, little did we know that Verity would have pneumonia about a month later! Sleep clinic is scheduled for May 25...

April 2: Ophthalmology
We drove 45 minutes to get to Ft. Carson to spend a whopping 5 minutes with Dr. B, who assured us Verity's eyes are looking great and he doesn't need to dilate them again until our fall appointment. Okie dokie then.

April 17: Orthopedics
At this follow-up appointment we got another hip X-ray, which indicated her left hip is still stiff but not any worse than in the fall. Her feet are looking good and we are to continue using the bar (supposedly naps and nighttime but in reality more like 2-3 hour chunks a couple of times a day).

April 19: Pediatric Visit
We needed a doctor to look at Verity's umbilical hernia, which was repaired with her G-tube surgery May 2017 but has been flaring up again recently. She ordered an abdominal ultrasound. (This is the day we realized Verity was getting sick, and at 3am the next morning we took her to the hospital, where she was diagnosed with aspiration pneumonia.)

April 24: Renal ultrasound and barium enema
The ultrasound looked normal (per the follow-up the next day), and the barium enema did not reveal any particular reason for Verity's difficulty pooping, although it did show a "tortuous" pathway. (Once she gets started going she does pretty well, but we frequently have to give her a liquid suppository to start the process.)

April 25: BAHA fitting
Verity got her Bone-Assisted Hearing Aid, which fits on a headband! We learned lots of details about how to use this device and have a whole bag of STUFF to go along with it. She wears it in stints, as it is very overwhelming for her to have it on all the time at this point. Slowly we are working up to it! She isn't terribly responsive, although we know for sure when she is DONE!

April 30: Adaptive Stroller Shopping
We went to an equipment provider that we know of through The Resource Exchange (our home therapy program) to look at and take measurements for an adaptive stroller for Verity.

May 3: Echocardiogram
Our cardiologist is very optimistic about the way Verity's heart looks right now. Her large VSD has completely patched up! She still has a teeny tiny one that causes her heart murmur, but everything is balanced, and he does not think PH will be a problem. Whew! He feels comfortable waiting another year before we do another echo.

May 4: Post-hospital follow-up with PCM
Verity had been off oxygen for some time before we had this appointment, and she looked quite well. Her PCM was pleased.

May 7: Abdominal ultrasound
This was a pretty quick appointment, but we didn't hear anything about the results until I asked a week later. We have a referral to see a pediatric surgeon since clearly the hernia is there.

May 15: Dietitian assessment
Our Verity weighed in at 14 pounds, 14 ounces!! And she is 26 inches long now!! In less than 2 weeks, she will be 15 months old...15 pounds by 15 months!!! Clearly she is growing and thriving on the Nourish formula. Now that she is 100% on this whole-foods mixture (plus plenty of water), our next step is to meet with the GI doc and formulate a plan for compressing her feeds so that she can get on more of a bolus feeding schedule. Her vomiting can still be a problem, particularly when she is bearing down to poo or pass gas, but it is much less frequently to be sure. I'm not going to lie...I would LOVE for her to not be hooked to the feeding pump 24/7. But...counting my blessings. Our baby is growing and thriving and becoming SO much stronger and sturdier!

In between all the above listed appointments were nearly weekly visits to the chiropractor as well as nearly weekly occupational and physical therapy sessions in our home.

COMING UP:
May 25: GI follow-up and Sleep Clinic

May 31: Surgery consult

June 6: Speech evaluation

June 7: BAHA check

Whew. That's all for now, folks!!!

New Resource for Trisomy Moms

March was Trisomy Awareness Month. I was pretty active in sharing things on Verity's Facebook page and a bit on Instagram (I'm fairly new to that world), but I completely neglected this blog! Some of us Trisomy moms were talking about what we wish we would have known, or what we would have told ourselves if we could speak from our present viewpoint to our distraught past selves when we first learned of our child's diagnosis.

From those discussions a blog was born. "More Than Ten Percent" seeks to share stories of surviving the first year as a Trisomy mama. The name comes from the fact that most of us were told at diagnosis that at the most, only 5-10% of these babies live to see their first birthdays. The truth is, when babies are given interventions, closer to 35% of Trisomy 13/18 babies reach that milestone.

If you'd like to see Verity's and my contribution to the blog, please check it out! And do read other stories as well. While there are similarities, each journey is so different. It just goes to show that doctors really have no way of knowing for sure what will happen. We pray that our stories can be a blessing and encouragement to parents who are struggling with a new and unexpected diagnosis.

Go, Baby, Go!

Verity and about a dozen other kids in our area got to participate in a neat program for special needs kids who particularly need help with mobility. The Resource Exchange (the program through which we get our weekly at-home therapy sessions) partnered with area sponsors and volunteers to provide little cars for the kids. (Almost 16-year-old Tobin lamented that Verity got a car before him, lol.)

Our family arrived at the event center at a local mall to get Verity fitted for her car. She was by far the smallest participant, so she needed a lot more modifications, which unfortunately meant that she wasn't able to participate in the grand parade at the end of the morning's efforts. But, we have a car! And while it may need a few tweaks, overall it seems to work for her, and we look forward to taking her out in it when the weather is nice and we have enough people available to make sure it's safe!

To see a video of Verity "driving" her car (she pushed the button to make it start!), you can go here!

Look! It's Trisomy 18 BLUE!
Perfect, since March was Trisomy Awareness Month!

The initial assessment: how can we keep her
seated safely?

See the big red button?!
That's what she pushes to make it go!

Lots of people brainstorming ideas for the best way
to make this work for Verity

Taking a break to be silly with Daddy

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

Resource Book PUBLISHED!

If you were following our journey shortly after Verity was born, you may recall the story behind the story Our Baby Will Be Different, a book I wrote to help prepare Verity's older siblings for what some of their baby sister's challenges might be. I am pleased to announce that the book is available for purchase in both a girl version AND now also a boy version! I am extremely grateful to our friend and illustrator Adam Turner for his gift of time and talent not only in illustrating both versions of the book, but also in helping me prepare the book for publishing in an on-demand format so that it can be available at any time for anyone who wants it.

This upgraded version includes a list of some Trisomy resources in the back along with space for journaling "Our Story." It would be a lovely and meaningful gift for any couple who learns their baby has Trisomy 18 or Trisomy 13.

Where I'm at...All I Ever Wanted Was a Croissant

This photo...isn't it sweet? Kenna took it for me the evening of Mother's Day.

That was a good day. An early morning walk in cool and windy weather; breakfast cooked by my husband; actually sitting through a whole church service; a yummy crock-pot lunch; a giant paper sack card with markered messages from my kids (I may need to go over the yellow and orange ones with pen so I can read them again someday, lol); some afternoon down time; a relaxed outing with the family (complete with the inevitable meltdown from the 3yo who decided he didn't want to walk after all); and some uninterrupted cuddle time with my baby girl, who melted my heart by grasping my finger with hers. (A privilege not to be taken lightly--her fists are still tightly clasped most of the time.)

Today...today is a hard day. Not so much physically; Verity seems to be resigned to her new boots-n-bar fate (that's a blog post for another time). But emotionally. Mentally. Spiritually. Well, yes, physically too, because all of this is so exhausting. I just want to sleep.

There is much I could write. Much I have wanted to process through writing. Much I am willing to share...when I can. But for now, I will share this...

[If you haven't yet read or heard the "Welcome to Holland" parable, please read it first. It's very short.]

This response by a special-needs mama, "It's Not Holland," so perfectly captures what our lives are like nowadays. It is also very short.

Once you read this, you'll understand what I mean when I say that today is a day when I'm shouting inside, "All I ever wanted was a croissant!"

Swallow Study

Thursday was Verity's last appointment for the week, a swallow study to evaluate whether she is ready for/capable of eating orally. She wasn't allowed to eat anything for 3 hours beforehand, so we adjusted her feeding schedule accordingly. Since the appointment was in the morning, she was still pretty sleepy (she does her best sleeping after we wake up for the day!!). In fact, it was kind of hard to get her to wake up enough to feed well enough for the doctor and therapists to see much!

We started by using a tiny syringe to squirt a special liquid in her mouth with barium (I think?!) to make it show up on the X-ray. Once they were able to view her swallowing from the contents of the syringe, they moved to a bottle. I think she would have done better with this if she had been more awake, but at least the main encouragement was certain: there is nothing structurally that would prevent Verity from having oral feeds. This is definitely good news and encourages us to take the next steps and work hard to make sure she doesn't end up having oral aversions, as many Trisomy kiddos experience.

Can you see Verity's feeding tube?!
Her nose is pointing toward the left.

So, our plan for now is to start feeding her with the little syringe (1ml) about 10 minutes before normal feeding time. We will give her however much she will take until feeding time, and then do the rest via her feeding pump (currently using the NG, or tube through her nose, but planning to move to a G-tube which will feed the stomach directly). So far 3ml seems to be about her limit, but the good news is that she really enjoys it, though she has started to sputter a bit and not do quite as well toward the end, so it has been pretty clear when we need to move on. The nice thing about this transitional step is that we can involve the older kids, too!

I am also encouraged to continue attempts at breastfeeding, although I'm not terribly optimistic about this as she hasn't latched at all since before we left the hospital. We also have a preemie nipple we can use when we think she might be ready to try a bottle. She continues to suck well on her pacifier (though we have to hold it in her mouth).

I confess I am excited to get rid of the feeding tube; it is awkward and of course always keeps us on our toes trying to make sure it doesn't get dislodged. But I am equally excited about the opportunity to have some normalcy with feeding times! As Verity grows stronger and more alert, we look forward to feeding her in a manner more similar to her older siblings.

The First of Many Appointments

Monday morning we took Verity in to see our pediatrician at the military health clinic. I LOVE Dr. T, who has seen most of our kids during our time at this assignment. He is so compassionate and practical! I had taken Rhema to see him for her 15-month well-child appointment soon after we got Verity's diagnosis last fall, and I ended up in tears in the exam room asking Dr. T what kind of support they could give us if we were able to bring Verity home. His response at the time was so encouraging and reassuring! We had touched base with him last week via the NICU staff, plus Ted had met with him in person during his TriCare runnings around on base, so Dr. T was well aware of how things were going with Verity after her birth.

Our appointment was so incredibly positive. Verity had gained weight and was tipping the scales at 6 pounds, 1 ounce (up from 5 pounds, 12 ounces the night before we were discharged). Dr. T was practically bouncing up and down, he was so excited to see how well Verity was doing! He literally could not keep from grinning as he said, "I usually try not to be overly positive in times like this, but when I look at her and all her stats and how well she's doing--it's really hard for me NOT to be super positive about her!" Oh, happy day! He answered the questions we had, talked us through our assignment transition process, and noted the case worker would meet us next week. He also wanted to schedule us to come in next Monday so he can have an opportunity not only to check up on Verity but also see how we as parents will then be coping with everything after having some time to settle in at home. He noted that we will have plenty of appointments to keep us busy and didn't want to add to our stress, so he won't make us come in randomly--however, we can say the word and come in anytime we feel we need to. And of course he wants us to do the normally scheduled well-baby appointments.

I'm starting a list of questions to ask him at next Monday's appointment, to include whether we can try continuous feeding at night to allow us parents a wee bit more rest. I'd also like to know exactly what evaluations she will be receiving in the coming months. Here's what I do know...all these appointments were scheduled on our behalf before we even left the hospital:

29 March = consultation with orthopedics
19 April = echocardiogram, immediately followed by a consultation with cardiologists
23 May = audiology testing with possible additional follow-up immediately after initial testing if further tests/info needed
19 June = comprehensive medical evaluations (4 hours) with a host of specialists

It's that last appointment for which I'd love a breakdown; what exactly will this entail? Other Trisomy parents highly recommend a sleep study to check for apnea and a swallow study before bottle or breastfeeding. I'd like to know if those are scheduled for that day and if not, see if we can get something scheduled before we move in July. Verity will be nearly 3 months old by the time we have this comprehensive appointment; I have no idea if she will be able and willing to nurse prior to that time or not, but I intend to keep trying!

Meanwhile...we are just plugging away at home, trying to figure out how to not only keep Verity fed and happy but also the army of other people God has put in our lives! We are grateful to have both grandmas with us for a short overlapping time. Ted's mom will head back home in about a week and a half. Hard to believe she will have been with us about 2 months!! It has been such a blessing to have her here, and we will miss her AND the wonderful help she has provided. My mom is able to stay somewhat indefinitely, and I'm thankful that we will have her and her years of nursing experience to help guide us as we navigate our new normal.

Information Overload!

Happy two-week birthday, Verity! It's amazing to think of all that has happened in two very long, short weeks. As we wrap up Day 15 here in the NICU, I'm finally getting some quiet time to chronicle today's happenings. First, though, a gratuitous shot of our very-much-compatible-with-life baby girl. Ain't she something?!

It's amazing how even a few ounces of weight gain can make a wee one look so much more filled out! As of last night, Verity was 5lbs, 7 oz, up 4 ounces from her birth weight. Tonight, she was 5 lbs, 10oz! Wowza!

Last week we were hearing optimistic ideas about us heading home Monday or Tuesday of this week. That is obviously not happening, but given our circumstances, I am quite all right with staying put a few more days. Here's today's story summed up in a single photo:

Does that make your brain explode? Because part of me wants to walk away rather than have to deal with all of those cords. But the rational part, the part that tells me to take a deep breath because WE CAN DO THIS, reminds me that these machines represent LIFE for Verity. And this afternoon in the NICU was all about the machines.

First, though, we squeezed in some regular ol' family time. Ted brought 6 kids to the NICU in the late morning. (Our older two are with my mother-in-law at a speech and debate tournament this week.) Rhema had a chance to "hold" her baby sister for the first time...stinkin' cute:

I took Arden, our 13yo son, out of the NICU for a surprise milkshake treat so I could spend some one-on-one time with him. I got to tell him personally how much I appreciated hearing various reports about how amazingly helpful he has been with his siblings. He really has a gift with younger children! And since Charis and Tobin have been away so much with their school and church activities, Arden has had to pitch in extra to help out. I love that kid...and yes, I can still call him a kid, even though he's taller than I am and starting to shave...! Oy! And I noticed today that his voice is deeper. What the heck?! When did this happen???!

After we returned to the NICU, I finally got my lunch and had some time to discuss some things with Ted; we hadn't even begun learning about the aforementioned machines, but our heads were already spinning from dealing with other matters. Our pastor joined us in the family lounge for a short visit, having come to the hospital to pray with another family, and it was perfect timing and a much needed chance to talk and pray with him about some joys as well as concerns.

Meanwhile, our case worker had been busy behind the scenes doing paperwork, making phone calls, and setting up training times for us. First up, training with respiratory therapists on how to use two machines that will help us monitor and care for Verity: a pulse oximeter, which will help monitor her heart rate and oxygen saturations (allowing us to sleep more easily at night and monitor her at times when she may not be in the room with us), and an electric suction machine. A bulb syringe should work fine when things are "normal," but in the event Verity aspirates and we need to clear her out so she can breathe, this suction machine will be good to have. We anticipate it will be an "in case of emergency" tool and not something we will use terribly frequently, but after our research and hearing from other T18 parents, we felt it would be important to have at home. Thankfully our doctor was happy to prescribe whatever we felt we needed to take Verity home, and our case worker handled the paperwork for us.

The respiratory training took close to an hour. By time it was over, it was 4pm, and our littles were done. They had been so very good; we kept Seanin and Rhema in the conference room with us and let them color while we listened and asked questions and signed papers. The others were in the family lounge probably watching stupid cartoons. But since Ted had arrived five hours earlier, it had indeed been a long afternoon for them all, so they headed home, leaving me to consult with the doctor and then continue with feeding tube training.

The only real bit of news the doctor gave me was that he didn't want to hurry us out the door, but rather wait until everyone is comfortable that we are truly ready to go home and feel confident taking care of Verity on our own. He is thinking Friday for our discharge, which will give us a good 48 hours or so to practice with our own machines. I might even switch to one of the "rooming in" options tomorrow or Thursday night; rather than being in the NICU, I'd be just across the hall in a hotel type room, where the nurses are just a few feet away, allowing me to "practice" caring for Verity without any oversight unless I ask for help.

So the feeding tube training was me by myself with the nurse...at 4:30pm...and I had not had a nap all day--I listened as well as I could and absorbed a fair amount, I'm sure, but my eyes were starting to cross I was so tired! I do wish Ted could have been there, but he can join us for the 11am feeding tomorrow. I decided to wait to use our own feeding equipment until tomorrow when I can wake up and feel a bit more alert!

Between all the meetings and discussions, not to mention pumping sessions (because let's not forget that every 2.5-3 hours I have to sit and pump!), caring for Verity, and trying to do normal stuff like, oh, go to the bathroom and eat...I headed into the dinner hour feeling extremely exhausted and overwhelmed. Seriously, being Verity's mom is a full-time job. I KNOW there is a learning curve; I KNOW it will get easier after we practice. I fully believe that God allowed me to experience such dramatic feeding difficulties with Zaden and Rhema to help prepare me for this journey. I'd like to think that eventually Verity will be able to nurse, but the truth of the matter is that for the foreseeable future, she can't do that. Simply keeping Verity alive will require intense time, effort, and energy on my part and, to a certain extent, the rest of the family's as well.

But. Lord willing, it will be a season--Verity will grow bigger and stronger; I won't have to pump quite so frequently; maybe she will even be able to nurse. For now, I will do my best to squeeze in as much of this as possible...

The "H" Word

Days 10 and 11
Aside from meeting with the cardiologists yesterday morning, the big news was that we heard the "H" word--HOME. Dr. A had a plan for getting us HOME early next week! I am combining these two days' updates because much of today's activity came out of discussions we had yesterday.

So, the doctor's goals and ours are the same: to get us home soon, but more importantly, to get us home safely. I so appreciate how clearly everyone is rooting for Verity to thrive and are working with her best interests in mind. This is all too often NOT the case for Trisomy families, and sadly many of them don't know differently and follow recommendations based on inaccurate information. Dr. A's two biggest things were making sure Verity could breathe well on her own (check!) plus making sure we had a plan of action for keeping her fed and growing.

As for that first item, we have been thrilled overall with Verity's numbers. While there have been alarms ringing with elevated heart rate and lower oxygen sats from time to time, they are not concerning and easily explained: she's mad, she's having a small bit of reflux, the monitors got kicked off, etc. The cardiologists as well as the NICU doctor cannot detect any heart murmur, and what we've seen over the past week and a half or so is a good indication of Verity's "normal," and nothing about it is concerning. There are no signs of apnea, for example, a very common Trisomy 18 problem. So while I have tended to worry over any change in status quo, talking with various doctors over the last couple of days has given me a lot more freedom to just RELAX. Verity is doing great!

As for the second going-home-milestone, we were optimistic in thinking that a 30-day feeding tube placement would get us home early next week, probably Tuesday, and we'd be able to work on nursing at our leisure while making sure Verity gets the nutrition she needs to grow. So, today revolved around feeding tube efforts. The nurses placed it early this morning; an X-ray was taken close to lunch time to make sure the end of it was in the appropriate place (it wasn't and needed to be drawn back 2cm); and a doctor arrived close to dinner time to put the bridle on. The bridle would have essentially tied it off underneath her nose, securing it so that it wouldn't be able to be yanked out. Unfortunately, though they were using the smallest/thinnest option available, Verity's nose is still too small for this to work for us.

This is a disappointing setback to be sure. However, in the scheme of things, it is a setback that we can deal with, even if we don't like our alternatives. A G-button is not really a good option at this point; it must be inserted via surgery, and they prefer not to do surgery on one as small as Verity. It may very well be ideal in the future, but now is not the right time. The only other alternative seems to be that Ted and I will have to learn how to place the tubes that she has been using here in the NICU. While I'm less than thrilled about this (I nearly passed out watching the nurse insert it last week and left to go shower when they were putting in the larger one today), I know that we will do what needs to be done, and after awhile it won't seem like a big deal. But the hassle, not to mention the risk of it being pulled out (by Verity or a curious sibling), just makes me heave a sigh...these are the things no one signs up for...you just do what you have to do. Anyway...all of this could mean that we don't actually get to go home on Tuesday; we just kind of have to wait and see.

In happier news, and going along with the feeding report, a speech therapist came in this morning and sat with me during a nursing attempt. Thankfully it was a fairly good attempt! Verity latched and sucked and swallowed multiple times. This all takes a lot of effort for her still, and we are nowhere close to being able to count on nursing as a major means of acquiring calories, but the structure of her mouth plus all the cues she is giving us indicate that she is fully capable of nursing someday, and so this is what we plan to work toward.

And along those lines, I've learned so much from the lactation consultants here! Once again, I'm amazed at how much of a continual learning process this is...my nursing resume continues to grow, lol. We decided today that my supply, while adequate for Verity's needs right now, really isn't where I'd like it to be, and so I have some new tips and tricks to try for gradually increasing it.

We've increased Verity's feeds to 50ml (given over 30 minutes) every 3 hours. They continue to fortify with extra calories, but she's getting breastmilk every time instead of a mix of my milk plus formula. So hooray for that! Though her weight last night had dipped JUST a bit, tonight she was up to 5 pounds, 5.3 ounces, her heaviest weight yet.

We also had a visit from a physical therapist today to initiate conversations about various therapies that will help Verity; we should receive a visit from an occupational therapist soon, but I don't know if it will be tomorrow or after the weekend. Our state of residence has a program called Early Intervention that will allow us to receive home visits from therapists in the area, and once we are in that system, they can hand us off to our next location so we can continue with forward progress. (No word yet on whether I'll be provided with a personal massage therapist, which I desperately need after sleeping under stress on a hospital bed for 11 nights...! Bummer that I had to cancel a scheduled massage appointment because Verity arrived the day before, lol.)

In other NICU news, our doctor received an award from the university (well-deserved, I'm sure! I love her!), and a film crew was here today to follow her around and work on a video. Dr. A asked me if I would be willing for Verity to be one of the patients she would see while on camera, and I told her we would be honored! I got a little emotional when she asked (hormones!) and told her that we had prayed that God would put together just the right team to care for Verity after she arrived, and we were so thankful that God had allowed Dr. A to have her two weeks of rounds at the same time we arrived in the NICU. So, Verity and I had cameo roles in this video! I had to sign a release form and everything, lol. The film crew had no idea about Verity's diagnosis, so I had the opportunity to share a little bit with them and give each of them a Verity card to keep.

Our Baby Will Be Different

After our T18 diagnosis, I wrote some text that I planned to read to our younger children to help them better understand and prepare for some things about Verity that would be different. I sent the text to a friend of ours, Adam Turner, who is a very gifted freelance artist to see if by chance he would be able to put together some sketches for me. He heartily agreed; however, he got very, very ill over the holidays with a severe virus that wiped him out for over a month. I didn't want to bother him, assuming he would have his own work piling up, and simply printed off my own pages and put together a little card stock booklet to read to my kiddos.

Well. The very day that Verity was born, a package arrived on our doorstep, quickly intercepted by our 16yo daughter who had received word from Adam that something was in the mail for us. Two mornings later, as we gathered our family together for a photo session, our daughter presented us with two copies (out of a total of 25) from this box that Adam ordered to be sent to us. It's my book!! I promptly burst into tears...good thing I hadn't put on my mascara for the day!

With the extra copies, I am so excited to be able to bless other families who are going through a similar journey to ours: finding themselves expecting a baby who will be "different" and trying to explain and prepare older siblings.

I offered to mail free copies while supplies lasted to families in the Trisomy Parent group, and the response has been so heartwarming. Almost all of our extra copies are spoken for, with a clamor for a "boy version" of the book--ours, of course, uses female pronouns since we knew Verity was a girl. I've contacted Adam to see if we can make this happen. I even received an offer from one of the moms to translate the text into Spanish!

As was mentioned several times, the available literature for families in these situations is extremely limited. Would you join me in praying about getting this published on a wider scale so we can bless and encourage even more families?

Knowledge Is Power: Trisomy Resources

In the Trisomy parents' Facebook group I've been involved with since our diagnosis with Verity, I frequently see posts from new members who are either awaiting test results or who have just received confirmation of a rare diagnosis. Oh, how I identify with the precious mom or dad's feelings of being confused and overwhelmed! I know my first couple of posts filled with questions probably sounded very similar. How grateful I was for the members who swiftly responded, answering questions as best as they could and sharing pictures and stories of their children.

Recently my heart was so moved by one of these "newbie" posts, and as I left my own comment, I couldn't help but feel grateful at how far we have come in the 5 months since learning what exactly Edwards Syndrome/Trisomy 18 is. I gave advice that I wish I had known in the beginning: while waiting for test results, resist the urge to GOOGLE!! Instead, if one simply MUST research, direct those efforts toward searching out those who actually live and work with Trisomy babies/children. For those parents with a diagnosis, there are Facebook groups available that are much more current and interactive than, for example, this Trisomy 18 support group I found initially. This forum is not a bad resource by any means, but it did not contain the wealth of contacts and ease of accessibility as the private FB group that I later found through a new friend's help. (I do still visit it from time to time; new posts are few and far between, but I've been able to encourage some folks by dropping in now and then and sharing a bit of our experience).

Many of the parents whom I've met through this journey have their own Facebook pages available for the public to follow. Quite a few of these precious little ones have their own fan clubs cheering them on and praying for them each time they hit a new obstacle. It's really a wonderful thing to share stories and help educate others about this particular special needs community. Here are some examples of pages (shared with permission because they are open to educating others):

Team Benjamin: A Celebration of Life with EA & Trisomy 18
Adventures with Annalea
Remembering Noelle Faith
Diary of an Almost Father
Danny's Miraculous Trisomy 18 Adventure
For the Love of Lillian: A Trisomy 18 Adventure
Addilyn's Odyssey, a Trisomy 18 Journey
Jonah's Journey with Trisomy 18
Adventures with Addalyn and Trisomy 18 (This one is private but Mom says she approves "non-crazy" people, lol!)
The Joy Gabriel Brings
Celebrating Nate

There are many, many more, and I'm sure a search on Facebook could easily lead you to others. (Also, if you "like" one of these public pages, FB will helpfully recommend similar pages for you.) My point here is to help educate and equip people to turn around and educate others who find themselves on a journey similar to ours. When a parent receives word of an "abnormal" diagnosis, fear is crippling. Even the RISK of a positive test result incites fear and uncertainty. But knowledge is power. At the same time, there is a lot of JUNK out there on the internet (and I'm not even talking about politics, lol), and if people find what they think are "answers" in places that really don't have current information, they can make poor decisions that they may very well regret the rest of their lives.

So, if you find yourself listening to a friend sobbing on the telephone or answering a slew of emotional texts from someone who has gotten That Dreaded Phone Call from The Doctor, my advice is to listen, pray with your friend, and then give hope and encouragement. No matter what the diagnosis, there IS support. There IS accurate information...as well as inaccurate. Help your friend find the resources needed to navigate the journey ahead with full awareness.

More specific resources for families expecting Trisomy babies:

Hope for Trisomy web site
Trisomy Angels Memorial Website
Support Organization for Trisomy 18, 13 and Related Disorders
TRIS (Tracking Rare Incidence Syndomes)
ITA (International Trisomy Alliance)

When Caregivers Don't

Can we talk for a moment about how "pro-choice" often means its supporters are only "pro" the "choice" IF it's the choice to murder the child? For those of us carrying special needs children, the CHOICE to give that child life, even if that life doesn't "look" the way others think it should look, frequently is not a choice that is respected. In fact, it is fought against. Doctors often argue against carrying these babies to term. They resist parents' desires to be treated normally throughout the pregnancy and after delivery. They urge termination, and, failing to convince, wash their hands and instead refuse life-giving care measures, no matter how relatively insignificant.

If you don't believe me, take a look at some of these comments from parents on the Rare Trisomy Parents page on Facebook...

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We had known about these things [heart defects] for a few months. We delivered [Jan. 12, 2017] and they told us the next morning she also has T18. The doctors at [hospital name] denied us surgery and told us she would die. 

We are in Ohio and our hospital refused to do the repair for my daughter’s heart; she had a very large vsd, moderate ASD and a PDA. They were all repaired at [a different hospital].

My general OB scheduled my termination when he got the results of my amniocentesis before the news was transferred to me. Told me my daughter would end up being institutionalized if I kept her. Needless to say I switched practices and delivered her at 38 weeks. Evelyn Grace is full of Grace and thriving!

Doctors said some crazy things like "it won't be worth it to fix her heart because it won't change the outcome for her. She's going to die from something else." And a surgeon declined to perform her tracheotomy because he couldn't deal with the "ethical considerations of performing this type of invasive surgery on someone who can feel pain but will never be capable of emotional connection." She just turned 2.

FT 18…she's 4 months old. I was told to abort her numerous times and said she would never survive! I had to be induced at 42 weeks pregnant! I was told she would be a vegetable if she would survive. Lucy has congenital heart defects but with full intervention she is bringing her sunlight into this world and doing wonderfully.

When Penny was tentatively diagnosed via ultrasound, I was given the number of days I had to terminate before we'd even had the screening back to confirm.

I was told my Jett [Trisomy 8] would pass away in the womb or never make it through delivery. I was told he'd have an immense amount of deformities. I was encouraged to get a late term abortion when I was diagnosed with preeclampsia. My son lived seven beautiful days and his only "deformity" was a missing fingernail on his left pinky. He touched SO many lives in his short life. I would do it all over again. 

The only option [initially] given to us was to terminate our baby. We had our obstetrician appointment today….he said that I am likely to miscarry him anyway….he said he wouldn't think that any pediatrician would treat our son because of the T18. I just feel like everywhere I turn I'm confronted by the attitude that he is sub human & not worth fighting for. I have had the comments by loved ones of maybe that's why it's better to terminate so the baby doesn't suffer (not a valid argument & not mine or my husbands choice anyway) & "I don't want to hold a dead baby" when talking about family involvement when he's born.

This diagnosis is very difficult. We found out at 12 weeks and termination was pushed during the next 5 appointments. It wasn't until I was 5 months pregnant that actual support was offered to me.

My youngest is Jonas with a kind of PT18. We had big fights for him since doctors denied him treatment for a long time, and he had pain because doctors didn’t believe in him. Now he is 3.5 years old, and doctors have admitted they were totally wrong.

After the blood test, another ultra sound and an amino, it has been confirmed that my little girl is positive for T18. The genetic department, specialist and my OBGYN are all without any hope or support. I began researching online only to find that babies born with this are not automatically doomed. I have looked in my area for support and information only to come up empty. I am a single mother of four other children as well. I currently have only the state insurance and fear this will impact any medical help my daughter could otherwise have.

 I wasn’t given much hope either during my pregnancy. In fact my OB said it was better not to get my hopes up.

We were not given any hope; everything the dr told us was very negative. We left the hospital with hospice care after being in NICU for 2 weeks. Our daughter will be 4 yrs old in less than 20 days. She has continually proven everyone wrong and surprises us every day.

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The above comments are from families of living Trisomy children (mostly T18) and don't even reflect the countless stories of children who were given dire diagnoses during their mothers' pregnancy only to be born perfectly healthy. How many times have medical predictions turned out to be completely wrong?! Enough times that urging abortion at the first sign of impending "problems" is definitely out of line! Even when there ARE "problems," many special needs children are well loved, a joy and blessing to their families. It is an insult to them at the very least to say that abortion is the only answer in situations like these.

We have been blessed to have regular appointments with medical professionals who are kind, compassionate, and generally understanding of our desires to support Verity however we can--at least during pregnancy. Honestly, I am not entirely sure what will happen after she is born. We are making our intentions as clear as we can, but if we run into major issues and she needs significant support, I am not familiar enough with folks at the university medical center to know exactly what their responses will be. 

One of our many prayers for after Verity's delivery is that God will graciously make the hard decisions for us...that we won't be faced with having to decide about something that isn't clearly right vs. wrong. Our deepest desire is to bring Him glory in all things, and we pray daily that Verity will fulfill the purposes God has for her life, however short or long it is here on earth. And the last thing we want to do is muddle through murky territory trying to figure out how to help Verity physically and yet somehow unintentionally hurting her or causing other people who are following her story to miss seeing God's hand in everything that is happening.

But regardless of how the details of Verity's earthly life play out...the fact is, SHE IS ALIVE. Very much so, according to the movements in my belly! And she deserves the same opportunities to live, breathe, grow, and thrive as any other baby who is born alive. 

Prayerfully, families like those represented in our Trisomy community will help change the culture in the medical world of assuming the worst. And prayerfully, caregivers will remember their higher calling to care for and support LIFE instead of encouraging death.

Raw, Ugly Truth

Yesterday afternoon I had two consultation appointments at the university medical center where we have had Verity's ultrasounds and where we anticipate birthing her. The first meeting was with the wonderful genetic counselor with whom we met immediately prior to our diagnostic ultrasound. The second was with one of the NICU doctors. While I do plan to unpack the information (and opinions) we received yesterday, I feel pressed by the Lord to first be completely open about my own personal struggle. I'm still dealing with the log in my own eye.

It's ugly. It's painful. And I need God to fully deal with it. I don't know how long this part of the journey will take (I suspect it will be an ongoing struggle), but I know it's all part of His refining fire. (That doesn't mean I have to like it.)

Anyway, below is what I wrote in my prayer journal yesterday morning...more to come later, I'm sure...

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Job 30:16-22 [part of my assigned daily Scripture reading] seems so real to me today.

"And now my soul is poured out within me; days of affliction have taken hold of me. The night racks my bones, and the pain that gnaws me takes no rest. With great force my garment is disfigured; it binds about me like the collar of my tunic. [My non-academic paraphrase: I feel as if I'm choking.] God has cast me into the mire, and I have become like dust and ashes. I cry to you for help and you do not answer me; I stand, and you only look at me. You have turned cruel to me; with the might of your hand you persecute me. You lift me up on the wind, you make me ride on it, and  you toss me about in the roar of the storm."

God...this heaviness. I can't bear it. Help me. I have no right to ask for your help, no right at all on my own merit. You know the depths of my heart: the ugliness. Selfishness. Resentment. Fear. Feeling resigned to a burden I may carry for...who knows how long? As awful, as ugly as it is, I can't be anything other than completely naked before you. After wrestling and somewhat coming to terms with the real possibility that our baby may die...I find myself now completely terrified that...

...she might live.

Devastating. I'm devastated to face that ugliness inside me. I'm ashamed of what it reveals about me. I'm sorry to say that my heart isn't always in line with what I know is true...

• Your grace is sufficient.
• Your power is perfect in my weakness.
• Your mercies are new every morning.
• Your faithfulness is unending.
• Your steadfast love never fails.
• You carry all my burdens.
• You give joy in the morning.
• You work all things for good.
• You will accomplish your purposes.
• You are refining us and making us more like you.

What can I say?? You've never "listened" to me when I've cried out, "ENOUGH! I can't take any more!" My hands were more than full when Kenna came along! And though I can't imagine life without our precious Kenna, Lucan, Zaden, Seanin, and Rhema, I AM FULL. OVERWHELMED.

I know special-needs families LOVE their children. Life revolves around serving these vulnerable, precious ones, and they wouldn't trade it for anything. I see, hear, feel the love as they talk or type about their children. I already love Verity, and I wouldn't trade this for my own plans--we all know that your plans and ways are much higher than ours. I know. I know. I KNOW.

But.

Sigh.

Someday maybe I won't need the but. Today is not that day. Today I look ahead and see real possibility of a life centered around medical appointments and special equipment for our special girl. I see lack of sleep, lack of order, lack of energy for my marriage and our other kids--our eight other precious kids whom YOU have given to us. Certainly no room for a business or ministry outside my home. Sure, I also see a lot of growth and compassion and love. But. (There's that word again.) It comes with a huge dose of exhaustion and ever-present concern.

And I am utterly, completely overwhelmed.