Of Demon Bugs and Broken Alabaster Jars

Written in my journal October 28, 2016, at a beautiful setting for our fall ladies' retreat:

I'm at the retreat center now, sitting outside on a beautiful late afternoon, feeling the wind in my hair, the cup of hot tea on my lap, and little Verity dancing in my belly. I'm on a wooden bench in front of a simple wooden cross. The lake behind and below this little overlook is entrancing with its endless ripples moving in the same wind that sways the branches above me and tosses leaves beneath me.

It is extraordinarily peaceful. I long to fully enjoy this quiet solitude. But I am irritated by these stupid little stinging black bugs! They have been a source of evil distraction since I first sat down, causing me to don my sweater despite the warm temperature. I've swatted and murdered a growing number of these diminutive demons, but their constant presence is definitely marring this experience! I had hoped for some poignant, reflective moments, maybe a rhema word from the Lord. And while I have searched out some Scripture and used my Blue Letter Bible app for a quick word study, so far this hasn't been the spiritual awakening and/or renewal I was envisioning!

Somehow that seems all too appropriate. I sit at the foot of the cross, longing to fully worship my Jesus but instead swatting at the demons of fear and anger, whose legions continue to torment me even though through Jesus I live in a place of rest and peace. I realize--NOW--as I write this--that these horrid little bugs, stirred up by the recent harvest, will linger through these warm, mild days, finally dying in the cold and dark days of winter.

As I think about the darkest times in my life up to this point, I realize that my deepest worship, the truest worship I have ever been capable of offering, has come in the cold, dark days of winter: times of death, loss, pain, hardship. And the doubts and fear? Gone. Dead. Completely overshadowed and overcome by the One who is worthy of all my worship, not because of what He did or didn't do in that season, but simply because of WHO HE IS.

I don't know what our "winter" with Verity will look like. All I know is, my current struggle with the demon bugs is all too real. Yet I say with Job, "Though He slay me, yet will I trust in Him" (Job 13:15). I hate the unknown, the uncertainty, with a passion. It's where the fear and frustration live and grow. But one thing I know--when the winter comes, I will yet praise Him. And the praise will slay the demons.

God...I have to trust you more than I need to explain you. I choose to continue offering myself to you. I want answers...I want a reason...but so much more than that? I want YOU. And I want you more than I want a sense of control. When my fingers tighten around the bottle you're asking me to pour out, then Lord--give me strength and courage to break that alabaster jar and let the extravagance overwhelm me and all who are near enough to inhale that fragrant offering. Make your name glorious, Jesus...my beautiful Savior.

Ultrasound #2: Feelings

I was full of anticipation Monday morning as we looked forward to seeing Verity's sweet little self on ultrasound shortly after lunch. I met Ted at the medical center...where the whole appointment seemed to be over in the blink of an eye.

And it all felt like a chasing after the wind.

We had some answers, a few precious facts to hold onto. But somehow they weren't enough. They weren't what I was looking for. Which begged the question...what exactly WAS I looking for...longing for?

I left the medical center planning a few stops before going home. Mostly I wanted to be alone to try to figure out my thoughts and feelings, which seemed so strange and foreign inside my own head. My first stop was a beautifully peaceful place, a crisis pregnancy center across the street from the abortion clinic where a few weeks ago we took part in an ongoing prayer vigil. I wanted to drop off some outgrown toddler clothing and meet one of the sweet volunteers who has corresponded with me a bit since learning about Verity. I got a quick tour of the facility and heard more about the loving and compassionate services offered there. I'm glad I stopped; it was a bright spot in a confusing day.

Traffic and miles of highways gave me plenty of time alone in the car to think and pray. Why was I feeling so emotional? Why, my soul, are you downcast? Why so disturbed within me? (Psalm 42:11a) What was my problem? The news about Verity had all been good--so many answers to specific prayers. And truly, I AM grateful for the good report.

Anger.

Seemingly out of nowhere, a rage roiled inside of me, even as I felt the crushing weight of despondency. And it took shape more quickly than the words I tried to form in prayer. (I'm ever so grateful the Lord understands our hearts.)

Anger at the clinical approach and unhelpful explanations from the doctor regarding the ultrasound.
Anger at her constant referral to our baby girl as it.
Anger at the feelings of helplessness and uncertainty.
Anger at having to be in the position of WAITING...interminable waiting...instead of planning. Don't we do enough WAITING as a military family?? Always waiting, waiting, waiting, uncertain about what is coming next. WAITING for specific leading from God--to retire after 20 years next summer or not? Before Verity's T18 diagnosis, we felt a peace about staying on active duty. This of course has us again in the position of WAITING for that next assignment...but knowing (what little we know) about Verity, everything seems extraordinarily more complicated. Will we be moving as a family of 11 with a special-needs baby...or as a family of 10 grieving the loss of a child, a sibling?

And fear. Oh, the fear.

It's ugly. There are so many days I don't have time for fear, other days when it simply isn't a part of life because LIFE is too full of God's joy and peace. When I'm living in worship, walking by faith instead of by sight, purposefully engaged in what God has called me to do...when my head rules my heart...fear is not a factor.

But. Feelings have a mind of their own, don't they? And so fear washes over me inexplicably, even as I experience the precious peace that never truly leaves but somehow seems quiet in those moments of crashing, frightful waves.

And so I sat in our driveway after a long afternoon of medical talk, errands, driving, thinking, and praying. I sat quite awhile, overcome by these powerful emotions that I hated to admit I had. Don't I trust God? Don't I take Him at His word? Hasn't He proved Himself loving and good and faithful no matter what my circumstances?

YES. All that is true.

But what I'm feeling is also real.

Our wise small group leader told us, after texting Ted and me particular verses meant to encourage us, that he knows Scripture isn't just platitudes...he wanted to make sure we understood his intentions, that he wasn't simply quoting verses to make the hurt go away and "fix things." Truth is truth, regardless of feelings.

I'm heading into this weekend feeling pretty battered and bruised emotionally. From anger so powerful it left me shaking in the driveway Monday afternoon to gut-wrenching fear that still rips at my heart when I least expect it, I've felt pummeled even as I strive to tread water amidst the "smaller" waves of sadness and confusion. In searching for tangible answers to my Trisomy 18 questions, I've only found more uncertainty.

On Christ the solid Rock I stand,
All other ground is sinking sand...all other ground is sinking sand...

For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known. 1 Corinthians 13:12, KJV

I've told our kids multiple times that our God is big enough to handle questions and doubts. I don't want to serve a God I fully understand--how would He then be GOD?! The truth is...I will never have things figured out this side of heaven. I will continue to wrestle. But like Jacob (Genesis 32:22-32), I won't let go until He blesses me.

Why, my soul, are you downcast?
    Why so disturbed within me?
Put your hope in God,
    for I will yet praise him,
    my Savior and my God. 
Psalm 42:11

I want to end with this verse, a hopeful note, a note of confidence in my Savior and my God. It does seem a tidy way to end this blog post...yet I feel it somehow wouldn't be completely honest. There is so much more I could say about this struggle, so many more details I could give about specific fears that haunt me. And Lord willing, I will bare it all; this isn't my story, but His. My deepest desire is to honor God, and even though some of the sharing is going to be painful and ugly...I think that just as I have to wrestle with the downcast, disturbed parts of me in order to get to that place of hope and praise...I also have to reveal that struggle so that--just maybe--others will also put their hope in God.

Special thanks to those who are wrestling with me in prayer...

Ultrasound #2: Facts

We had another ultrasound yesterday since the last one had not yielded good visibility for Verity's heart. I was so looking forward to getting another glimpse of our baby girl, whose movements grow increasingly stronger day by day. I was also anticipating some answers--something, anything--that might help us prepare for what Verity will need, what she will be like, upon her arrival.

Verity was in the exact same position as at the ultrasound 4 weeks prior--face down--but her increased growth allowed much better visibility for the tech whose priority was to get good shots and measurements of her heart and profile. Aside from her little feet turning inward and the clenched hands, both typical of Trisomy 18, everything looked so beautifully normal to us as parents. Our technician was kind and talkative and able to complete her tasks quickly. It wasn't long at all before we heard from Dr. B, the female doctor who had spoken with us after Verity's last ultrasound.

I will do my best to summarize the facts as we learned them yesterday. Considering it has been 24 hours and I did not take written notes, I may very well forget something, but here is what I remember the doctor telling us:

• The baby's heart looks very normal--this was an immense relief and an answer to prayer, as many T18 babies have heart issues. We have been praying that we will not have to make a decision about any major interventions that may cause harm to Verity, and knowing her heart is healthy in utero gives us peace.

• Verity's profile is absolutely beautiful. Oh wait...I'm supposed to be giving facts here, not opinions! ;-) But that is my interpretation of what Ted and I saw on the monitor coupled with Dr. B's assessment that there is no sign of a cleft lip (which could indicate a cleft palate but is not something that can be determined by ultrasound). Again, cause for celebration. I firmly believe that no matter WHAT this precious baby's appearance, I will see her as beautiful; however, one of my prayers from the beginning has been that our other children will feel connected to and not repulsed by their baby sister. Additionally, it gives me hope that perhaps I will even be able to nurse her. 

• Despite slowed growth being typical of T18 babies, Verity is of an average weight for a baby at 22 weeks gestation (about a pound). Now that I'm typing this out, I realize I neglected to ask specifically about her head circumference, which was in the 5th percentile last time. I will see if I can find out anything about that.

• The doctor could see no other physical concerns that were not already noted in the previous screening. Again, reason to praise the Lord!

• Based on this assessment, Dr. B is even questioning the need for Verity to have to be in the NICU, assuming she arrives close enough to her due date and is delivered without complications. She also suggested that whether I chose to do a C-section delivery or not would not make any difference. Now...the fact that she said these things is...a fact...but...this leads me to a topic for what obviously needs to be a follow-up to this post, which is feelings...so, I will unfortunately have to leave you hanging there for now.

Dr. B asked us some questions we honestly could not answer, mostly because it seemed so many of those answers would have had to begin with the words, "It depends..." I don't remember all of the questions, but I do remember phrases like hospice care, medical interventions, and ethical decisions. As Ted and I stared blankly at each other throughout these queries, it became all too obvious that, despite the reading we have done, we simply do not have enough information to equip us for the wide range of possibilities ahead of us.

So...we left the medical center with another appointment scheduled for next week: a consultation with the genetic counselor as well as a doctor from the NICU. These folks will be able to help us think through the "what ifs." Actually, perhaps it would be more accurate to say they will first help us know what exactly some of those "what ifs" are...

Despite hearing all of these facts, we left somehow feeling as if we know even less than we did before the ultrasound...

Beautifully Ordinary

At breakfast I noted the date and said to my husband, "It's been a month since we got the phone call from the doctor."

His reaction: "It's only been a month?!"

We've done a whole lot of living in that one-month period...celebrated two milestone birthdays; traipsed in and out of libraries; made trips to the dentist, chiropractor, and women's health clinic; watched the trees turn colors; muddled our way through math lessons and science experiments; prayed together; laughed together; cried together.

Homemade pizza.
Loads of laundry.
Birthday cake.
Read-aloud time.
AWANA verses.
Praise team rehearsals.
Meeting friends; changing diapers; cooking meals; stepping over Legos.

So many normal, mundane things and activities. So many wonderful, familiar faces. So much depth and intensity in the ORDINARY, simply because we have been granted the gift of awareness.

And this morning, the gift of an ordinary mommy moment...what we've always called the Morning Coffee Dance in my pregnancies. (It used to be the Hot Tea Dance, back in my younger years when I thought coffee was awful.) Soon after downing my first sips of hot goodness, I felt the familiar flutters of baby movements. So precious. So...normal.

Our Verity is very much alive. She is an extraordinary gift, and we will cherish each moment with her.

Every
beautifully
ordinary
moment...

And even...maybe especially...the not-so-ordinary ones.

Feeling Loved

When you receive a book in the mail from a friend the same day a different friend sends you a link for that same book...

When you receive multiple hand-written expressions of support and encouragement in your mailbox...

When your phone buzzes throughout the day with messages brimming with prayer and God's promises...

How can I help but feel God's tender love?!

Supportive Friends, Part 2: Connections

Our family has been overwhelmed (in a good way!) by the love and support we have seen over the last few weeks. One way a number of people have reached out to us is by sending messages telling us about someone they know or have heard of who has experienced a similar pregnancy diagnosis to ours.

I think it's human nature to desire and seek out connections with others who have commonalities with us. Being more of an extrovert myself, I usually thrive on relationships, both in-person and online. But I have a confession to make...right now, I don't feel I have the mental or emotional capacity to personally respond to what feels like an inundation of new contacts. While our family made the decision to be very open with Verity's story, letting others in to read about and experience this journey with us (if they desire), I am not sure I'm ready to venture too far out of my "comfort zone" just yet. 

Do I accept all of these "Friend Requests" from people I don't know personally? Do I need to write to everyone whose contact information I've been given? After pondering and praying for awhile, I feel peace about saying NO in many cases. 

This is not to say I don't want to hear from other families who have already trekked down a path that looks like ours. Indeed, I've already been blessed by some connections set up by mutual friends. It is simply amazing how many folks know someone who has experienced or is currently experiencing something like our journey with Verity. And it's humbling to read so many sweet messages of love and encouragement as friends reach out to me in private messages offering someone else's contact information.

It would be a full-time job to keep up with all these stories...as much as I would love to! So here is a general, blanket response I give here in a public forum, again speaking personally and not necessarily for every parent in my situation: I am happy to hear from others who have been down a similar road, but please know that I do not feel I am in the position to be the one making initial contact. And please do not be offended if I don't reply right away to an offer for a "Trisomy 18 set-up;" it's only because it's not the only "blind date" I've been approached about. ;-) If people would like to email or private message me their story, that is the easiest way for me to absorb information and glean from other people's experiences...on my own time, when I'm emotionally able to handle whatever it may be. (I have yet to watch a video a sweet lady sent me about her own darling baby girl...I started watching it and realized it was set to music...and knew I would be a sobbing mess before it was over!! Since I was getting ready to leave the house shortly afterward, I opted to wait to watch the whole thing!)

From friends who say they really don't know what to say to friends who are moved to share someone's story with me, I have to say we know some truly wonderful people! Please know we are deeply moved by the prayers and concern of so many.

Supportive Friends, Part 1: What to Say??

A sweet long-distance friend, with whom I frequently chat back and forth via a walkie-talkie app, heaved a sigh of apology after she sent me an utterly normal message. Some time after she had recorded this (admittedly snarky) comment (we share a sarcastic sense of humor), she saw a message from me saying I was having an emotionally difficult day. She then felt bad and sent this:

"I never know whether normalcy is best, or talking about Verity is best...so...if ever I just screw it up, please tell me, because I have no idea what I'm doing."

Oh, how I love this dear woman! I have no idea what I'm doing, either!

Truly, I'm not sure how I would be friends with me. What would I say? What should I NOT say?

I can by no means speak for others in situations similar to mine, but for those in my personal circles, I can say that in general...normal is best. But...not at the expense of ignoring what is going on. Does that even make sense? I appreciate trying to have a sense of normalcy and routine. This isn't something I want or need to talk about every single time I see you. At the same time...pretending nothing is wrong and ignoring the elephant in the room feels awkward, too.

There are days when it really doesn't matter what you say to me or how you say it...I'm going to cry on your shoulder whether you're ready for it or not. (Thanks, Brenda, for being brave with and for me Sunday morning right before the service started!!) There are other days when there is inexplicable strength coursing through my veins and I can speak of difficult things without batting an eye. So...possibly the easiest route for those whom I encounter on a regular basis might be to just go with the flow. For your own comfort's sake, you may wish to feel me out with a "How are you holding up today?" type of question...but be prepared for an honest answer, because my emotions are at surface-level these days!

In the grand scheme of things, it honestly does not matter what you say, or even what you don't say. Another friend responded to our news about Verity this way: "I have no idea what to say except that I love you and I care!"

And really, that's all we need to hear from our friends anyway.

Today I Went to an Abortion Clinic

The day it was confirmed that our baby girl has Trisomy 18, I "happened" upon a Facebook post on a friend's page calling for volunteers to take a one-hour shift during the 40 Days for Life campaign to pray and stand peacefully in front of a local Planned Parenthood.

From the time I was a young teen, I have always been passionately pro-life. My stance has never changed--however, I humbly admit my perspective of "the other side" has morphed from one of critical judgment to one full of compassion, grace, and mercy. While I still could never condone abortion, friendships with dear friends who have experienced an abortion have helped me gain a small understanding of the turmoil before, during, and after the traumatic event.

Now I am carrying a child in my womb who has "abnormalities," the kind that leave some mothers feeling a desperate sort of grief, perhaps a feeling that there really is no other option for them other than to abort. And my heart goes out to them. From the beginning of our journey with Verity, we have asserted that abortion is NOT an option for us, because we stand on the truth of God's Word, truth that teaches all humans are created in the image of God (Genesis 1:27); that we are all fearfully and wonderfully made (Psalm 139); that God knew us before we were even conceived (Jeremiah 1:5); that God has plans for us that reach into eternity (Ephesians 2:8-10).

Because we know the truth, it has set us free from fear and anxiety. This is not to say we do not grieve or feel pain or sadness; on the contrary, we feel and grieve deeply. Agonizingly. Just this morning my husband and I wept together during our prayer time as we shared some of our fears with each other.

But wait--didn't you say you were free from fear?!

Yes. We are free from the fear that paralyzes, fear that hinders us from moving forward in faith. God has NOT given us a spirit of fear, but a spirit of love, of power, and of a sound mind (2 Timothy 1:7).

God's truth gives us joy that can't be explained; peace that is beyond understanding; and hope that does not disappoint. I am thankful beyond words for TRUTH.

And I have considered what the ramifications would be for me, for my family, for Baby Verity...

If I did.
Not.
Know.
Truth.

If all I had was a diagnosis...
If all I knew were the statistics...
If my only counsel were to consider what was best for ME in the here and now...

What would I do? What would I choose?

I can't even imagine.

And so today...I went to an abortion clinic. And I stood with three of my children as cold wind whipped about our faces, smiling and praying blessings over drivers who honked and waved as well as those who shouted obscenities. Praying God will reveal truth to those who are searching as well as to those who think they know it all. Praying God's people will reach out with love and compassion to those who are in desperate circumstances as well as to those who simply feel inconvenienced.

Today...and always...I stand for life.
Because I carry a precious life within me.
Because I enjoy the beauty of life on earth.
And because through Jesus I have the gift of eternal 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

Navigating a New Normal

These days I feel I have a better understanding of those who have experienced the loss of a close loved one. My parents are both still living; the closest family members who have passed away are my grandmother (the only living grandparent for all of my growing-up years) and my father-in-law, who passed away 3 years after my wedding. As deeply as I loved these two people, I know my sadness pales in comparison to what my dad felt when his mother died and what my husband still feels after 16 years of doing life without his own father.

Our current situation is incredibly different, yet the sense of loss is all too real. Verity is still very much alive. I feel her movements more and more each day. I have marveled over the years at how wondrous it is to feel a human being growing and taking shape within my own body--I have never gotten over those fluttery kicks that later become stronger jabs and sharp pokes. Whether it is the first or the ninth baby, it is an indescribable feeling.

And feeling a live, wiggly baby...while not knowing just how long she might be alive...is such a strange, strange place emotionally and mentally.

There is life...and death...all in one thought.

It is exhausting.

I sleep, but not really: I am in a seemingly endless state of weariness that numbs the senses even as it sharpens emotion.

I forget, but not really: I immerse myself in necessary activities (homeschooling and home management after a fashion), and when that time of focus ends, I remember reality once again.

And it hurts.

This is life in our new normal. We continue with our routine as much as possible, for there is comfort and security in the familiar, especially where the children are concerned. Yet we give ourselves and each other grace upon grace, for who can function in a fog?

Life in this fog has strange yet beautiful paradoxes.
Joy in sadness.
Peace with uncertainty.
Physical fatigue, spiritual rest.

I'm not sure how to end this post...this is where we are at.

Peace, Hope, Joy, and Love

This morning I am meditating on and rejoicing in the truth from Romans 5:1-5...

Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, 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.

Worship in the Storm of Suffering

Last Sunday morning I wrote the following to my prayer circle:

This morning I am torn. I long for music, prayer, corporate worship, and hearing from the Lord through His servants. But I dread facing our church family--some of whom already know [about Verity's diagnosis], but many others who don't. I can't stay home and hide forever. But I am not sure I'm ready to face this in a large group setting. We are very much in prayer about how and when to share publicly; our biggest desire is to bring the sacrifice of praise to our loving Father, the fruit of lips that confess His holy name. Salvation is found in no other name!

One of my dear friends, mentors, and ministry and prayer partners responded with this, below, which I share with her permission. It was a fitting response, especially in light of the fact that we celebrated the Lord's Supper during our church service (I did, in fact, end up attending the service with my family, sans mascara and with extra tissues in my pocket).

Oh my sweet friend. You are in a type of no man's land of sorrow and grief...I started to write something more and then received a picture of our Lord Jesus on the cross. Often we hear, and as believers we agree, that we are to walk with our Lord in His suffering....today I had the image of Jesus having to yield his flesh to the perfect will of the Father and He had to do so to the point of death. I saw a bloody, bruised, and brutalized Jesus. 

So how does this apply to the life of little Verity? She is God's perfect plan for you and Ted. You are carrying life, a sign of the love between the two of you and of the oneness of your relationship with God. You praise Him for life and you are continuing to praise Him not only with your lips, that sacrifice of praise, but with your continued devotion to Him as you walk out His plan in the midst of sorrow, grief, and the pain of a broken heart. You are actively yielding your flesh to walk out His purpose, to fulfill His plan. Jesus had to yield His human flesh to pay the price, to bring the gift of salvation. You are wrestling...not against God, but rather that wrestling of desiring to bring that sacrifice of praise in the midst of your sorrow and suffering and how to do that in a way that honors Him. My temptation is to retreat to my Father's arms in times of grief and not let humanity in to observe my pain and suffering. I know He will give me rest but then I thought about Jesus...His suffering was visible...he groaned, cried out, was tormented, and felt abandoned by God. And then the victory..."into your hands I commend my spirit...it is finished." 

We are able to walk through the whole process and celebrate the perfect plan of the Father revealed in the suffering of Jesus. We know the end of the story. It makes reading it easier....I know that you are fully human and God loves you with an everlasting love. He has placed [Verity] inside of you, to grow and be nurtured by you, protected by you, loved by you. He has made her visible to the world through your growing and changing body. He has also given you knowledge that her life is compromised and she might not live to birth. This is contrary to what we  expect when bringing life into the world...and Jesus' suffering and sacrifice is contrary to what most people expect when thinking of the Son of God. The question is why did God choose the sacrifice of His only son to bring salvation to the world? Wasn't there another way? Why is this God's plan for Verity? For you and Ted and your family? As your flesh groans, you ARE praising Him. Each word you share about your desire to bring honor to God is praising Him. As you share your sorrow and still walk through the process (yielding your flesh) to His purpose you are praising Him, as you love and desire this little girl, IT IS an act of praise in our fallen world. Sharing with your church family and allowing them to see the reality of the yielding of the flesh, in the midst of pain and sorrow, to the perfect will of God is a high calling...one for which you have been well prepared. 

Support

Flowers from Ted's front office and a family from our church

The following are just SOME of the amazing words of support and encouragement we have received over the last week. God speaks...definitely through His Word, which we cling to, but also through His people who are filled with His Word and His Spirit!

***********

My heart is strangely joyful knowing that our King is holding you in His arms. I see it so clearly!

Just had the image of Moses held up by Aaron and Joshua when he felt weary from standing to proclaim God's victory before the warring Israelites. Know beyond a shadow of a doubt that we stand supporting you, encouraging you, holding you up to the Father, before a world at war against life, so that when you don't have the strength (physical or emotional) to stand, you will continue to bring glory to our ever Merciful God and to proclaim the Truth of his Goodness to a broken nation. We love you and sweet baby Verity.

We stand in agreement with you that God's peace is beyond our understanding but so needed every single day! Great is His faithfulness!

I read Ps. 111:7-8 this morning in the New King James Version, and it really spoke to me, right after your message:  "The works of His hands are verity and justice; all His precepts are sure.  They stand fast forever and ever, and are done in truth and uprightness."  Praying for you and your family today!

I don't have words of wisdom to share. Just know that I simultaneously weep and rejoice with you regarding your sweet little girl. Thank you for involving me in your early circle of prayer and inviting me to walk this with you in prayer support.

May God be glorified every moment of this process. I pray that someone that you meet--a doctor, a nurse, an ultrasound tech, someone--that does not know the Lord will come to know our sweet Savior because of you and this beautiful baby.

Thank you for your openness and vulnerability. I will certainly be praying specifically for you, your little girl, Ted and your other children. You're right, God IS good. Always. 

I too carried a sweet little baby boy knowing that he would pass away after being born. Beverly, saying goodbye to my son was the hardest thing I've ever done, but feeling God hold me through the entire ordeal and seeing how he worked even that gut-wrenching situation to accomplish good in my life is also one of the biggest miracles I've ever experienced. 

I am praying for you and Ted, for Verity, and for the rest of the family. I'm sure I don't have any new words or Scripture that others haven't already shared... but just know that I am lifting you up in prayer to our Father. Much love!

Hello, my friend.  I am thinking about you.  I am praying for you!  I pray that every time the Enemy whispers "worry" you will hear the reassurance of the Holy Spirit that much louder.  When the flesh cries out "I can't do this" that your heart will stand firm in God's truth knowing that with Him you are strong in your weakness.  I love you and your family!

I am so very sorry. Thank you for including me in your circle- know that I am praying for you, Ted, your little girl, and your whole family. I've walked through the fear of the possibility of such a diagnosis, and can't imagine having to face this reality head on. Thank you for your honesty and allowing us to hurt with you and pray for you. It's okay to be scared and grieved and angry and all those things.You are in my heart and I am here for you. I love you, sweet friend, and pray for God's indescribable peace to cover you all.

My dear friend. I sit with tears for your pain and your faith. I am proud to know you. I will continue to pray for Peace to wash over you, relentlessly like waves - always sure to be coming in again.

I wanted you to know that I am in prayer for you and Verity and your family. Your faith and trust in God is incredibly evident and a true witness to me and I'm sure others. May God continue you to bless you.

I read your message right before teaching my high school biology class, and we started out or day praying for you and  your family, including this precious baby girl.  In my quiet time this morning I read Is. 43, and when I read your message, I just went back to that passage for your baby (and for you):  "But now, thus says the Lord, who created you, O Jacob, and He who formed you, O Israel:  "Fear not, for I have redeemed you;   I have called you by your name; you are Mine.  When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you.  When you walk through the fire, you shall not be burned, nor the flame scorch you. . . ." 

God immediately put this scripture on my heart: 
Isaiah 41:10: ‘Do not fear, for I am with you; Do not anxiously look about you, for I am your God.
I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand.’
Please know I am praying for you right now, sending strength and comfort. I'm hugging you right now. I'm here for you. Love you dear Sister in Christ. 

May God open doors for you to be witnesses to his glory, peace, love, and grace. Prayers for this little one that he/she will be a testimony to his love and faithfulness. Prayers for wisdom for everyone involved, and that each step brings you closer to him.

I am praying for God to continue to cover you all with His peace. This peace passes all of our understanding. It strengthens us through any and all circumstances. 

With the journey and convictions leading to this point, I know the picture is so clear now.  But I also know that doesn't fully take away the hurt and fear completely. I love you and yes, God is good.

I just had the privilege to pray over your family and your journey!  Thousands of things flood my mind, one resonates and that is that He is God and we are not and thus His sovereign hand has ever detail in perfect order.  I am so grateful for your feet which are planted firmly in Him.

I will keep this brief knowing how precious time is and how overwhelming just communicating with those you love can be. I will be praying for ALL of you daily and like this morning continually as God speaks to my heart.  I know He will lead me in what and how to pray as I seek His face. The one thing that I want to share and I know you already know is that God is SUFFICIENT!  In my own journey of life this is one of the things I cling to over and over again. I wish I could be there and talk face to face or just sit and be with you or hold you but I know God is providing and will provide his ministering "angels" and I will stay on my knees and know I am here. I am humbled that you would trust me to pray, and pray I will. I love you.

Hard Lessons

September 29, 2016

Yesterday I learned a few things…

1. It is much, MUCH harder to share difficult news with people in person than it is over the phone or computer.
2. You can get a much-needed nap…but when you wake up, nothing has really changed.
3. The words “funeral arrangements” have no business being a part of a discussion with your spouse about a coming baby. In light of eternity, Death does not have the victory, but here on earth, that grave surely does have a sting. Curse you, Satan.

Introducing Verity Irene

A few nights ago, after we put our younger four children to bed, we sat down with the older four kids and outlined the information we had received that day. It was a peaceful, calm conversation. Some tears were shed, but the Holy Spirit was so very, very present. We allowed them to ask or say anything they wanted, and though a few questions surfaced, for the most part they were very, very quiet. Our 9-year-old daughter was the most visibly distraught—thankfully she was sitting by her daddy and snuggled up close.

We shared our baby’s name with the children during that time together, and the next day we shared with our prayer circles. We would like people to be praying for our little girl by name, and we want anyone who follows our journey to think of her as a person in utero. Most people who know our clan know that The Name of the Baby is always a Well-Kept Secret in our family…we share the gender ahead of time, but it has been fun waiting to tell our babies’ God-given names at their birth. Not even our parents or our other children know the babies' names before their actual arrival (much to their chagrin!).

This situation is obviously much different. We do not know how long we will have this little girl on earth. One of the stirrings of our hearts is to proclaim the truth about Life—it is a gift from God, the Creator, and He makes no mistakes. This morning’s Bible reading for me included Psalm 116, and one verse states, “Precious in the sight of the Lord is the death of his saints” (v. 15). We know from Psalm 139 that our lives are precious in His sight as well, and while I don’t deny that I had a good, ugly cry for awhile as I read through this whole Psalm (verse 1—oh, my soul), I am so incredibly grateful at the way His Word is living and active and speaks to us.

And so, we would like to introduce Verity Irene.

Verity…Truth.
Irene…Peace.

The name Verity has been on my heart from the very beginning of this pregnancy—God plainly spoke His Truth to me not only about our very specific situation (long before even knowing about Trisomy 18), but He has also continued to press His eternal truths on our hearts. We pray that we can share those truths with others along this journey.

I knew my mother's first name and my middle name was Greek for "peace." And it was so, so obvious that God was pouring out His peace that passes all understanding all during the weekend as we waited on pins and needles to get to that ultrasound. His peace continues to flood our souls, even as our emotions rise and fall—plunge, even. May His peace resonate in our whole family during this journey, and may others SEE that supernatural peace and desire to know the Prince of Peace on a personal level.

For you formed my inward parts;
    you knitted me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
    my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
    intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
    the days that were formed for me,
    when as yet there was none of them.
Psalm 139:13-16

Results

Written Tuesday, September 27, 2016

Today was an information-filled day. After what seemed like an eternity of waiting for our ultrasound appointment, we have been flooded with more information than we perhaps wanted. This morning a doctor from the university called with the FISH results (preliminary amnio findings), which confirmed Trisomy 18. Not a surprise after seeing the ultrasound, but still…

Then the women’s health clinic called later in the morning, and I spoke with one of the doctors at some length. She was very kind and compassionate and told me it was my decision whether to transfer my OB care to the university or to continue monthly appointments with the military clinic where I've been seen (my preference). I did learn that our insurance completely covers my and baby’s care—they would not cover an abortion, which somewhat restores my faith in our government health care. Of course abortion is not an option for us, but due to a miscommunication in our conversation, the doctor’s comment originally made it sound like our insurance would not cover my OB care and delivery of our baby! I was so relieved to find out that the doctor was actually talking about abortion not being covered! Whew. Such heavy things…

Anyway. It was rather bizarre, being calm and collected on the phone, talking with this doctor about where delivery will happen—it all depends on the baby’s condition at the time of delivery. If she dies in utero…we will deliver at the hospital where our last baby was born. We had such a good experience there, and I loved everyone we met. I would not mind at all being there—except for the fact that of course I would much prefer to deliver a live baby girl. :-(

If she is still alive when I go into labor, we will deliver her at the university medical center, which is much better equipped for the neonatal care that she will need. I confess I was relieved to hear that they are concerned for our baby’s welfare after birth despite the fact that most in the medical community view Trisomy 18 as a death sentence.

It was strangely comforting to be able to make even the relatively simple decision about where and how to continue my OB care. I am so thankful that I’m not being told what to do, that my (and our) desires are a huge factor in what happens going forward. My next OB appointment was rescheduled so that I can meet with an actual OBGYN doctor, not a nurse practitioner as was previously the case. I will be seen again on October 14, and we have another ultrasound on October 24. The complete amnio analysis will only give us specific information on the genes/structure of the Trisomy 18…it will not give us information about how the condition will manifest in our baby girl specifically. We will rely on the ultrasound to give us more of a heads-up with that.

Ultrasound

After 96 hours of waiting...it was time. A time we had all anticipated and dreaded. I was ready...and yet so unprepared. I felt rather nauseated and yet somehow perfectly calm.

"There's a peace I've come to know

Though my heart and flesh may fail..."

Our ultrasound tech was young and energetic, but we could tell she was careful in selecting her words. We didn't expect to hear much in the way of diagnostics, but we were eager to learn the gender of our baby, the one normal aspect of this whole process. We love getting to meet our babies in utero! What a beautiful thing it is to see a tiny person wiggling around inside my belly, even as I can feel little movements.

The first thing we saw was "the string of pearls," a beautiful spine. Baby was face down at first, but that position didn't last long. We soon learned our little girl is ACTIVE! And fairly contentious, lol, as she didn't make it easy for the tech to take the needed measurements. In fact, we didn't learn for sure that we were having a girl until quite some time had passed; those little legs were clamped together!

Even though we didn't have numbers for comparing, Ted and I have seen enough ultrasounds to know that our baby was different in at least one respect. I waited...longed to see...those little hands opening and closing. I had never wanted to see that "Hi, Mom!" pose more, a snapshot we have in other baby books lining our shelves, a beautiful profile with a little hand "waving." But our baby never waved. Her hands remained in clenched fists, one of the common problems associated with Trisomy 18. 

"There's an anchor for my soul;

I can say, 'It is well...'"

Aside from the flailing fists, we really were not sure what to make of the whole ordeal. It seemed to take so long to get all the required measurements and photos. The tech even returned to the room after leaving so that she could attempt to get some better takes--we noticed that she zoned in on the top of the baby's head and her heart.

After what seemed an eternity, a doctor entered the room to speak with us. (I was so incredibly grateful to learn that they would not send us away from the medical center without some answers: how difficult it would have been to have to go home and wait some more!) The doctor noted several concerning things from the ultrasound, all of which are characteristic of Trisomy 18:

• The clenched fists, as we ourselves had observed
• Clubbed feet
• Small head (measuring in the 5th percentile)
• Fluid on the brain

While she said the ultrasound results did not show specific problems with the heart, she verbally indicated that there were some suspicious aspects that made them wonder--still, the official report does not indicate anything of concern with the heart. It is, however, something that they will look at closely during our next ultrasound.

Based on these findings, we followed through with an amniocentesis, the first I have ever experienced in all my pregnancies. 

"There's a peace I've come to know

Though my heart and flesh may fail...

There's an anchor for my soul;

I can say, 'It is well...'

Jesus has overcome, and the grave is overwhelmed.

Victory is won--He is risen from the dead.

And I will rise when He calls my name,

No more sorrow, no more pain

I will rise on eagles' wings

Before my God fall on my knees

And rise...I will rise

There's a day that's drawing near

When this darkness breaks to light

And the shadows disappear

And my faith shall be my eyes...

Jesus has overcome, and the grave is overwhelmed.

Victory is won--He is risen from the dead.

And I will rise when He calls my name,

No more sorrow, no more pain

I will rise on eagles' wings

Before my God fall on my knees

And rise...I will rise."

["I Will Rise" by Chris Tomlin]

This song was the soundtrack playing in my head during the whole hour and a half or so that I lay on that table. The few people who knew of our situation at that point were praying, and it was evident. Even as I tried to hold back tears, I could truly say, "It is well with my soul." 

We were told that the initial results of the amnio would come as soon as 1-2 days, with the final analysis finished within 7-10 days. Numbly I received more papers--Ted held quite the growing stack by this point. We scheduled another ultrasound for October 24, and finally the ordeal was over. We had spent nearly 4 hours in the university medical center. But the hardest part was to come: sharing with our parents and our other children what we had learned and then waiting...for what? Confirmation that our baby girl really does have Edwards Syndrome? We knew. We knew! The DNA analysis hadn't even begun, but in our hearts we were already On That Road.

What IS Trisomy 18 (Edwards Syndrome)?

We had nearly an hour-long consultation with a genetic counselor just before our ultrasound. Of course, after receiving the phone call from my doctor 4 days prior, we had immediately done some research on Edwards Syndrome. The analysis was pretty grim. I read enough to see that the studies on survival rates show an extremely high mortality rate either before or soon after birth for children with Trisomy 18. That was all the information I could handle during those days leading up to the ultrasound...one bridge at a time.

As you may perhaps surmise from the name of the condition, there is extra genetic material in the 18th chromosome that can cause a wide range of developmental problems. Our counselor gave us the following list of specific things the doctor would be looking for in our ultrasound:

• Heart defects, such as:

1. VSD (Ventricular Septal Defect): a hole between the lower chambers
2. ASD (Atrial Septal Defect): a hole between the upper chambers
3. Coarctation of the aorta: a narrowing of the exit vessel from the heart

• Kidney problems
• Part of the intestinal tract is outside the stomach (omphalocele)
• The esophagus doesn’t connect to the stomach (esophageal artesia)
• Excess amniotic fluid (polyhydramnios)
• Clenched hands
• Pocket of fluid on the brain (choroid plexus cysts)
• Rocker bottom feet
• Delayed growth
• Small jaw (mycrognathia)
• Small head (microcephaly)
• Low-set ears
• Strawberry-shaped head
• Severe developmental delays
• Umbilical or inguinal hernia

Among other things, our discussion also included information about how the quad screen blood test works as well as how Trisomy 18 was determined to be the risk factor for our baby as opposed to other genetic issues. It turned out to be a good biology lesson for all of three of us--Charis, our oldest daughter, had chosen to accompany us to the ultrasound. (I gave her the option since she has attended nearly every ultrasound we have ever had done...she loves seeing the babies in my womb and being the first to know their gender!)

Along with all of this, we learned more about our post-ultrasound options...what we might choose to do if the ultrasound findings were or were not clear. Basically, there were two things that could give us more specific information:

1. A blood test that would check specifically for chromosomes. This would give us results with 99% accuracy...however, there is the chance for both false positive and false negative results.
2. An amniocentesis. Based on an experience I had had 13 years prior with our third child, I was leery of getting an amnio because of the information I had received at that time, which seemed to indicate that an amnio would actually increase my chances of miscarrying the baby. The question we looked at was...does the amnio itself increase the risk of losing a baby, or is it perhaps the fact that most amnios are done during pregnancies with complications to begin with?

Armed with more information than we perhaps wanted, we decided on our own, in the counselor's office as she went to finish some paperwork, that if the ultrasound showed specific concerns, we would elect to have an amnio done immediately afterward. If the ultrasound seemed to indicate that all was well, we would go ahead and do a blood test on me just in case.

And then it was time. We followed the counselor to our ultrasound room where the tech was preparing for us.

And So It Begins

Friday, September 23, 2016…from my prayer journal:

Yesterday may well be a day I look back on as “the day that changed my life.” Time will tell…in the meantime, I wait 73 hours…wait for definite answers, resolution to the “abnormal results of your blood test.” That phone call was NOT what I expected early yesterday morning; I was waiting for a call to schedule our 20-week ultrasound. But. Instead I learned about test results that show an increased risk of our baby having Trisomy 18. Edwards syndrome. Basically a death sentence—either baby dies in utero, or shortly after birth, or, in rare cases, lives longer with severe—severe—physical and mental difficulties.

We are still looking at fairly good odds: 9/10 chance we have a perfectly healthy baby. But 1/10 is quite a jump from 1/187—my average risk based on my (oh-so-ancient) age.

"My soul finds rest in God alone—my salvation comes from Him. He alone is my rock and my salvation; He is my fortress, I will never be shaken." (Psalm 62:1-2, NIV)

Oh, God! Whatever we learn Monday at the ultrasound—it won’t change who you are! It won’t change my passion for you; at least it won’t make me turn away from you. I trust you fully because you are worthy of my trust. I desire to give you glory no matter what. You know my heart—it’s yours.

You also know my weaknesses and frailties. You know my fears. My anxieties. My needs. Your grace is sufficient. Hold me close, Lord. These next 3 days will seem so long. And then…what? “Each day has enough trouble of its own.” Let me be a seeker of your kingdom.