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

ER Scare

On October 24, as we were eating our dinner, we had one of the most terrifying experiences we've ever had with Verity. We heard her sputtering (a sure sign of reflux and vomiting to come), and before we could do anything, she was spitting up blood out of her mouth while blood shot out of her G-tube, up the extension tubing and into the syringe. As Ted wiped her mouth and tried to calm her, I took a hurried photo and posted it to one of my Trisomy groups, asking what was to be done. Quick responses confirmed out gut feeling: we needed to take her to the ER ASAP! I packed an overnight bag, and we passed the childcare torch to the teenagers (Charis was just returning from a babysitting job herself).

Many people began praying for us as we posted to Verity's page. There are multiple things that could cause bleeding like this, many of which are pretty dire. I sat in the back seat with Verity, trying to keep her awake and praying like crazy. We've made trips to the ER with children before--even with Verity before--but never had I experienced the feeling of such a weighted question hovering unspoken in the air: Would this be goodbye? The beginning of the end? 

We were ushered quickly into a room in the ER, bypassing everyone else in the waiting room. The serious look on the doctor's face only intensified our feelings of dread. It didn't help any that Verity had another bloody coughing episode soon after we got there.

Verity was a little trooper, getting her IV like a champ. She got chest X-rays and a CT scan done, and then we proceeded to wait and answer questions as people came and went. The doctor was on the phone multiple times with a specialist in Denver, and about 3 hours later, we had an answer!

Of all the possibilities, this was an answer we could handle: a nosebleed down the back of the throat! Whew! Poor baby...it made sense, with all the suctioning we have had to do in recent weeks because of her progressively worsening reflux. But oh, it was scary! Everyone assured us we absolutely needed to come in to verify that it wasn't anything worse, but when she was in such good shape and the tests were not showing anything, not even an infection (though we discovered a UTI a few days later, sigh), we were relieved to be able to take our sleepy baby and our tired selves HOME.

Hope for the Best, Prepare for the Worst

HOPE. It's a word I've seen over and over during this journey with Verity and her diagnosis. Edwards Syndrome, a condition I had never even heard of before autumn hit, has become an all-too-close reality over these past months. It has been exactly 5 months since I picked up the phone and stood in shock listening to a doctor tell me about Trisomy 18 while assuring me that my risk factor was "only 1 in 10" but that she recommended further diagnostic analysis.

In those 5 months, we have learned so very much. We have become connected with families whose lives revolve around this rare condition as they sacrificially love the precious little ones who have been entrusted to them. Five months: for some of these dear families, little ones have been born, lived, and died within that span of time. Some are even now fighting for their lives in hospitals. Some didn't make it to term but were born with dignity, cherished, photographed, and are still loved and missed.

When a new member joins the Rare Trisomy Parents Facebook page, the introductory message is often filled with fear--a family is awaiting testing results and has heard their child might have a rare trisomy condition, or they have just received a confirming diagnosis and are terrified of what the future will hold. It is a beautiful thing to watch comment after comment appear on the thread, with photos of beautiful children of various ages being posted along with words of encouragement and HOPE.

"There is always hope." 
"Never give up hope." 
"Hope for the best."

Hoping for the best undoubtedly looks different for each person, each family represented. Part of our own personal struggle during this journey is discerning what, exactly, ARE we hoping for?? In the beginning, it seemed enough to hope that Verity would be born alive and everyone in our family would get to meet and hold her. The more we learned and interacted with families who are raising living T18 children, the more we began to adjust our expectations: with no significant anomalies showing on ultrasounds, Verity certainly seems to have higher-than-usual chances of doing well after birth. And I've read and seen so much that has led me to prepare to be the mother to a special-needs child who will be with us "long-term." (Even T18 babies who do well only have approximately a 5-10% chance of reaching their first birthday; still, there are a number who are living well beyond the one-year mark.)

Our hopes, our expectations, swung from fairly dire on one side of the spectrum (we hope to meet Verity alive before we have to bury her) to the other extreme of the realm of possibility (we hope she will need minimal interventions and proves to be the exception to the Edwards Syndrome "rules").

The problem with emotions is that they don't stay in a box. Three weeks ago joy surged in my heart as I anticipated giving birth to Verity. Whatever happens, I know God is writing this story, and I desire to focus on HIM instead of ME. Our number one prayer from the beginning has been that God will fulfill HIS purposes for and through Verity. Thank the Lord for His steadfastness and for facts that don't change with our feelings...

A few nights ago when I was having regular (painful) contractions, I got up in the night to sip water and read over recent posts in the Trisomy parent group. The picture of a beautiful infant girl caught my eye, and I wept as I read her mama's announcement that this sweet baby was born February 16 at 42 weeks, weighing 6 pounds, 4 ounces, and lived exactly 48 hours before being taken to heaven.

It hit me like a tidal wave: Verity is already a full-term baby and looking to be a relatively healthy weight. I've been making assumptions I have no right to make. I sobbed. I begged God, Please...let my parents get here in time to hold Verity. The truth is, I really have NO IDEA what will happen once our daughter is born. I can't take anything for granted. God doesn't owe me a thing--rather the contrary! He gave His only Son, Jesus, as a sacrifice for my sin, the only sacrifice that would satisfy the requirements for atonement. Mercy triumphs over judgment because of God's incredible love for each person He has made...

...including medically fragile Verity...
...including her emotionally fragile mother.

I was a weepy mess that night. I went back to bed when the contractions subsided, hoping to get a bit of sleep, and I found myself in a dialogue with God. I'm not necessarily a "sign reader," seeing "omens" or whatnot in any and every circumstance, but it seemed that in the span of a few short days, gentle reminders were coming at me from all directions with a common theme of not taking anything for granted, that pain and loss and death are inevitable during our time on earth, that God's glory is displayed in our weakness, and that His purposes are loving, good, and eternal.

Whatever happens...whether it is the "best" or the "worst"...I believe God has been preparing us for it. I believe there is purpose in all of this and that Verity is (and will continue to be) bringing people into a closer relationship with Jesus. Her life AND her death will glorify her Creator.

We have almost come to the end of this pregnancy journey, and I'm reminded of the Scripture passage we included on our Verity photo cards that we have given out to so many people over the past few months:

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. Romans 5:1-5

This hope is not an "I hope something good will happen" kind of a hope! No, the hope Jesus gives is the assurance that what God has promised is indeed truth. We named Verity to remind us and to share with others the TRUTH.

Have you been justified by faith?
Do you have peace with God through Jesus Christ?
Have you received grace?
Do you rejoice in having assurance of an eternity in heaven?

If so, then you can rejoice in any suffering you may be experiencing--even if, like me, you are weeping from time to time because of it.

If not, then know that you are in my prayers. We often pray for loved ones who haven't yet accepted or acknowledged that Jesus Christ is THE way, the truth, and the life and that no one comes to God except through Him (John 14:6). Verity's diagnosis 5 months ago caused us to specifically be praying that God would draw people to Himself through our baby girl and the journey our family has been given with her. Please know that Ted or I would love to talk with you if you have any questions about any of this!

There is no fear in love, but perfect love casts out fear. For fear has to do with punishment, and whoever fears has not been perfected in love. 1 John 4:18

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...

****************

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.

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...