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

The Greatest of These Is Love

Last night was so very exhausting. In the evening I left the house with my husband for our small group meeting time, having just blown my top at the people I love most dearly in all the world. Typical mom-ranting-and-raving stuff...feeling like no one is listening to me and/or doing the exact opposite of what I've asked them to do...utter chaos everywhere I look, a child snitching food I'm planning to take for our own shared dinner, a sick teenager, someone crying...

I said my piece and marched out to the car because what more could I do?! We were already late and if I kept talking I'd say more things I'd regret. Yet I felt torn. I clearly needed to get away for some spiritual reflection, but it felt so hypocritical to be going to a time of group prayer and Bible study while leaving such a wake of emotional destruction behind me.

It is way too easy to "excuse" or rationalize moments like this as a normal overflow of the tremendous stress we're living under these days. But honestly? I have struggled with lack of patience, gentleness, kindness, LOVE, and, yes, wisdom and maturity for...well, my whole life. I know God uses our circumstances to make us more like Jesus. I WANT to be refined, but I very much dislike the fire. I WANT to be conformed to His image, but I very much dislike the pressures of being molded.

While I do believe I have grown in many ways over the last couple of decades, I often feel like the sullen, self-centered teenager that I know I was (particularly after my parents uprooted me and moved our family from urban Dallas to rural Walworth County right before my sophomore year). I don't guard my words. I lash out, speaking in hasty anger. I sigh and feel resentful, bitter, misunderstood, frustrated. Like the Apostle Paul, "I do not understand my own actions....I do the very thing I hate....I have the desire to do good, but not the ability to carry it out" (Romans 7).

And then I get over myself and feel awful, realizing that words wound and whether or not I had the "right" to be angry or upset about something, the relationships represented in these encounters are far more important than proving a point. I often ask for forgiveness (probably not often enough), and I am humbled at how quickly it is lovingly granted, with little arms (or long ones!) wrapping me in a hug as I hear "I love you."

How is it that we imperfect humans can reflect Jesus so beautifully at times? Unconditional love and forgiveness freely granted...how beautiful, how humbling that even my smallest children teach me more and more about God's love.

Faith. Hope. Love. 1 Corinthians 13.

Perhaps I should have expected that in the most trying times, in this season of knowing about Verity and yet not knowing enough about Verity, each of these qualities would be tested. My faith, as I wrestle with my own limited expectations not only of God, but of His plan for me and for my family. My hope, as I tread the fine line between praying for the best yet preparing for the worst...and often not knowing exactly what I think the "best" or the "worst" even looks like.

And my love? Wow. So challenging to realize that all too often, I love generously only when it is easy and convenient. But when I'm struggling so very much myself, when I feel empty? When I'm afraid or depressed? I don't know what to say other than I believe God is growing His heart of love in me. Because truly? I got nothin'. And yet somehow the love keeps flowing. Thank you, Lord.

Waiting for Spring

My grown-up self has never been fond of winter. Growing up in Texas, I was eager as any kid to see a REAL snowfall, enough to make an actual snowman and go sledding. In my memories of Christmas visits to exotic places like Wisconsin and New Mexico, my brother and I romped in snowdrifts with cousins and stomped through woods with my dad and aunt to chop down a tree for decorating. I have no memory whatsoever of cold temperatures, only of the sweet delight that came from being out in the wild, wonderful, beautiful world of winter.

Then I grew up and realized how much I despise being cold, how much I dread the loss of the sun’s light and warmth and comfort. Though at times I can live vicariously through the children’s exuberance, I mostly dislike the bundle-everyone-up routine before we leave the house, invariably searching for lost mittens, hats, and boots while struggling with reluctant zippers. Truly I could spend all winter inside my house and never step foot outside…if it weren’t for so many extra bodies in the same house, driving me to eventual insanity with their boundless energy and boisterous voices (to put it mildly).

Winter is fabulous—in December, when snowmen and Christmas lights are part of the magic of holiday festivities. But then January comes, with dreary, colorless days. I’m already tired of sub-freezing temperatures, dirty gray snow, icy wind, and face-numbing dashes from the house to the van to the store and back. I long for spring, for the freedom to take a walk without cumbersome winter gear, for the ease in taking or sending children outside to play without concern for frostbite.

Spring. New life. New hope.

The fact that Verity is due toward the end of winter has not escaped me. Truly we are in a season of winter, sorting through all kinds of nuanced emotions, tracing trails of thoughts that we have never before had to follow. And I cannot deny that this winter is hard. Dark and cold, depressing and even oppressing at times.

But. We do not grieve as those who have no hope (1 Thessalonians 4:13). And we encourage one another (verse 18)—or at least allow ourselves to BE encouraged—by the words of truth.

“Shall we receive good from God, and shall we not receive evil?” Job 2:10

“In the day of prosperity be joyful, and in the day of adversity consider: God has made the one as well as the other…” Ecclesiastes 7:14

I am grateful for an eternal, unchanging God, my Rock in tumultuous, changing circumstances. I am grateful He not only hears my cries…He also knows and understands my pain and confusion.

“Since then we have a great high priest who has passed through the heavens, Jesus, the Son of God, let us hold fast our confession. For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help us in time of need.” Hebrews 4:14-16

I am grateful for loved ones who allow me the freedom to cry and rant and wallow in the pain and difficulty of fear and uncertainty—and yet gently remind me (or pray for the Holy Spirit to remind me!) that God will use every facet of this journey in order to conform us to the likeness of Jesus and to bring Him eternal glory.

I am grateful that I can sit in the presence of a holy God, unafraid and unashamed to spill out my true thoughts and feelings.

I am grateful that He loves me enough to never let me go, and even if I’m angry and acting and feeling unlovable, He still holds me close.

I wrote in my prayer journal a few days ago:

I don’t really find much solace in prayer these days….I go through the spiritual motions of following you, because what else can I do?? To whom else would I go?? There is no one else in heaven but you, and earth has nothing for me [Psalm 73:25]. You have the words of eternal life [John 6:68]. I may not like what all the words say at every point in this journey of life, but I acknowledge you alone are Truth, you are Sovereign, you are GOOD. And so I follow. I obey. My heart may not be leaping for joy, but I’m not leaving.

We walk by faith, not by sight…we walk by faith, not by feelings. Thank God for the gift of faith!

And thank God for the gift of Spring. For it WILL come. And we will appreciate the warmth, the sunshine, and the signs of new life all the more because of the cold, dark days of winter.

Whatever happens with Verity...we know the truth. And the truth sets us free and allows us to rejoice in the new life God has given us: literal life on earth as we bring forth another child into this world, but even more important, eternal life with Him, a life that will make everything on earth fade away as we step out of the darkness of winter and into everlasting spring.

Weeping may tarry for the night, but joy comes with the morning…

You have turned for me my mourning into dancing; you have loosed my sackcloth and clothed me with gladness, that my glory may sing your praise and not be silent. O LORD my God, I will give thanks to you forever! Psalm 30:5b, 11-12

Morning may not be here…yet…

I may not be dancing…yet…

Spring hasn’t arrived…yet…

But I’m learning there is no shame in allowing myself to weep in the winter.

When It's Not a Happy New Year

I’m a classic Type A person. Firstborn. Planner. Goal-setter.

Typically, I’m motivated, energetic, busy. (The latter is not necessarily a good thing.)

New Year’s resolutions and goals? Bring on the planner and pencil—let’s do this!

But…not this year. Not even close. I wish I could say “The spirit is willing but the flesh is weak,” but to be perfectly honest, the spirit is probably even weaker than the flesh these days. 

The turning of the calendar to 2017 has been far more difficult than I would have imagined. This is a big year for us, and a year ago we would have embraced it with such a spirit of adventure: At the end of May Ted will have reached the 20-year milestone in his military career. Our 20^th anniversary is coming up in June. We are scheduled to move…somewhere...later in the summer.

Obviously the adventurous outlook we would have had otherwise has been replaced…

Uncertainty.

Fear.

Grief.

Anxiety.

Exhaustion.

Depression.

I can’t deny that these feelings overwhelm me pretty much daily. Oh, I’ve learned to cope. My husband helps me stay faithful with daily time in prayer and God’s Word (even when, honestly, I don’t really feel like it). Supportive friends and family somehow send a note or text just when I need to know I’m not totally forgotten. And thanks to previous experience, I now recognize when I’m drifting toward depression, and my daily regimen of certain essential oils goes a long way toward supporting me emotionally and mentally. But I still have to deal with reality.

And my reality now includes utter, complete uncertainty. It also includes a widening circle of acquaintances within the Trisomy community who have daily joys and struggles living with their Trisomy children. All too often, though, we learn of the loss of one of these little ones, whether in utero or after a life well loved outside the womb. New Year’s weekend for me included tearful prayers for a family whose 5-month-old son was fighting for his life in a hospital. I broke down when I read the news that he had lost the battle. I don’t even know these people personally, and yet we are connected because of a diagnosis. I weep with them though I may never meet them. The beauty and fragility of the lives of our babies connect us in both encouraging and heartbreaking ways.

This new year…what does it hold for us? For Verity? We are less than 8 weeks away from her due date. Will we make it that long? Perhaps she will surprise us all and be one of the 33% of Trisomy 18 babies who clings to life in the womb beyond 40-42 weeks; or perhaps we will meet her well before February 25.

There are so many more questions than answers—which is a testimony to how outdated much of the available information about this diagnosis really is. Our early research had us assuming we would be burying Verity shortly after birth. And while that is still a distinct possibility, we’ve learned enough to realize that we may need to answer different questions, such as:

What will be the best way to help Verity breathe if, like many other T18 babies, she needs respiratory support?

What kind of feeding support will we need to give her?

How tiny will she be? Will preemie outfits work?

How can we rearrange our bedroom to allow her to sleep as closely as possible to my bedside?

What kinds of monitoring will we need to learn?

And looming over it all…will Verity be with us when we move to our next location? Or will we have had to say goodbye to her, laying her to rest before packing up and starting over somewhere else?

It’s too exhausting, too depressing to wonder what our lives will look like next month or next year. As much as we know God has a plan and purpose for all of this, as much as we acknowledge His power, His sovereignty, His love—this walk of faith is the hardest thing we’ve ever done. There are times when answers are not available, times when I know Truth but can’t feel it. Times when I am in God’s Word and yet feel crushed, overwhelmed, and discouraged. Times when I sit in prayer, yet can say absolutely nothing.

It isn’t totally honest to leave it at that, even though I have no pat answers and my general mood has been pretty downcast lately. In the midst of uncertainty, along this strange grieving process (strange because there isn’t anything tangible—yet—to grieve), I am grateful for moments of sunshine. Verity’s movements make me smile. My children make me laugh. My husband and I are growing as a couple in ways we never could have dreamed. There is so much LIFE surrounding me that I simply MUST live in the present moment. My 3-year-old’s earnest request for a spot on the bed beside me deserves an affirmative response. My teenagers’ thoughtful observations deserve my focused attention. And all the children, from the blissfully unaware 17-month-old to my newly licensed 16-year-old, deserve to know how very loved they are and how much joy they bring us.

For everything there is a season, and a time for every matter under heaven…

a time to weep, and a time to laugh;
a time to mourn, and a time to dance…

Of Healing and Miracles

I’m learning that faith in the fire isn’t easily defined. We can say we believe something, have Scripture to prove our points, and then find ourselves being tossed by the waves of circumstances beyond our previous realm of experience. All we can do is keep our heads above water, gulp enough air for breathing, and trust that the faith nurtured by the Holy Spirit is enough to keep us buoyant until the seas grow calm.

The “air” I’m inhaling, then, is the truth I KNOW, the foundation I don’t even have to think about.

God is real.

God is love.

God is all-powerful.

God is eternal and ever-present.

Let’s add a life vest—other truths that are buckled tightly around me and keep me from flailing and slipping underwater when I grow weary.

God has saved me through Jesus Christ and will never let me go.

God is sovereign; God is good; God has eternal purposes beyond what I can see.

God’s ways are higher than my ways, His thoughts higher than my thoughts.

This part is easy. These things I know. What I do NOT know is how, exactly, God will wield His power and work His purposes in particular situations.

God is all-powerful: so can God do miracles? Of course—Jesus used miracles to prove His claim that He is the Son of God.

God is eternal: so does He do miracles in these days when Jesus Christ doesn’t walk in a physical body on earth? Undoubtedly—many of us can testify to supernatural works that can only be attributed to the intervening hand of the Lord.

God is sovereign: so does God bring healing that overrides a doctor’s diagnosis? Sure, sometimes…I don’t have proof of this, but I suspect God really gets a kick out of showing up and showing off when people predict doom and gloom. I think He takes delight in doing the unexpected in order to get someone’s attention and draw them to Himself. (Come on…a donkey speaking to Balaam? A boy defeating a giant with a slingshot? A Jewish girl chosen as queen of Persia who just happens to save her people from mass slaughter? I could go on...)

So yes, I know these things. I believe God is powerful. I believe that if He wanted to, God could “heal” Verity.

Let me tell you what I don’t know. I don’t know what to say—how to respond—to kindhearted, well-meaning, faith-filled, encouraging proclamations about how people are praying for healing for Baby Verity, praying for nothing less than a miracle.

The night we got confirmation that Verity has full Trisomy 18 (as opposed to partial or “mosaic” T18), we talked with our older four kids about what all this means. Our 13-year-old son asked if God could heal Verity—heal her in the sense of making her “normal.”

I answered carefully. “CAN God heal her? Of course. He COULD. He is able. But in order to make her NOT have this condition, He would have to reverse what He has already set in motion. Verity has an extra 18^th chromosome in every single cell of her body, and unless He chooses to intervene in miraculous ways, that extra chromosome is always going to be there.”

What I didn’t want then (or now, truthfully)? False hope. A hope that rests on Verity somehow becoming “normal,” all because we hope and pray for healing and wait expectantly for a miracle. And so that night, I gently squashed the idea of praying for Verity’s healing, mostly because I myself feel that God’s purposes for Verity’s life are not of the miraculous, physical-healing kind.

I will say, however…after a few weeks of wrestling over various thoughts and emotions, God gently showed me that He WILL bring healing for Verity—she will be healed and made whole in heaven, if not here on earth. And so I had another talk with our family, this time telling them that I was sorry if I had discouraged them from praying healing prayers for their baby sister. I still think that “healing” can mean different things to different people, and I still emphasize that heaven is our real home, and THAT is where all things will be restored and renewed. So our prayers for healing WILL be answered, ultimately. And if they keep these things in mind…if they aren’t expecting a “healing” or a “miracle” to look a certain way…if they are open to God’s answer being perfect, no matter what it looks like…then, children—friends—by all means, pray for healing!

Am I wrong to put these mental limits, all these caveats, on our prayers—especially the prayers of other people?

It’s an honest question.

If someone feels led to pray for Verity’s full, restorative healing—who am I to stop that? Pray. Pray as you feel led. But I need to share where God has led ME, and that is to a peace that whatever happens, God has ALREADY done miracles. (Verity is already knit together and growing in my womb, fearfully and wonderfully made, just as she is.) God has ALREADY answered prayers. And I fully expect that He will continue to answer prayers and do miracles.

But…my miracle may not be as glorious as you envision.

My miracle may be bravely enduring labor knowing I will give birth to a stillborn baby.

My miracle may be that I have strength each day to care for a special-needs child with love and compassion, a thought that both drains and terrifies me.

My miracle may be losing our girl to the arms of Jesus just as we have finally learned to “do life” with her and all her needs, nurses, and equipment.

My miracle may be praising God and embracing the life He has given me when I would rather curl up and die.

You know what? On second thought…pray for miracles. Please…pray for miracles. 

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...