Let Freedom Ring!

This is an Independence Day post, but I will start with a flashback to Christmas vacation when I was tucking my 3 little boys in bed. Lucan, my 8yo, was talking about something (I don't recall what exactly) that would happen in the future, and he was rattling off the ages he and his siblings would be at the time. His words were matter of fact: "I'll be 12, Zaden will be 10, Seanin will be 8, Rhema will be 6, and Verity will be 4, if she's still alive."

If she's still alive?!?!

My breath caught in my throat, and a knot formed in my stomach.

I don't remember how that conversation ended, whether I said anything in particular or not. I only remember standing outside of the bedroom after the door was closed and sobbing my eyes out.

Two months later, on February 28, 2018, Verity turned one year old. It was a huge milestone. Statistics we had heard since Verity was in utero indicated if she reached that one-year birthday, she would be one of the 5-10% who did.

The very next morning, March 1, Lucan ran upstairs to find his baby sister. When he saw her, his eyes grew round, and he shouted with excitement, "She's still alive!!!"

The weight of his surprise settled on my shoulders with a heavy realization: my sweet, tenderhearted son thought Verity would succumb to statistics now that her birthday was over.

And it hit me that twice now, my son had voiced the uncertainty of the burden under which we all were living, even if we didn't talk about it or acknowledge it...even if we didn't realize it was there to begin with.

Verity's birthday party came and went. Appointments, therapies, sleepless nights, little developments and progress, an overnight stay in the hospital, a bit of regression, more appointments and therapies, another hospital admission, recovery, more appointments and therapies, more developments...days slipped into weeks, which turned into months. And at some point in the middle of all this daily LIFE, I experienced a startling realization.

We had spent pretty much all of Verity's first year of life holding our breath, waiting...in a sense...to see if she would die.

Does that sound absolutely awful? I was heartbroken when I realized how true it was. We had said goodbye to more little ones in our Trisomy community than I could have imagined possible. Some of our closest little friends were in and out of the hospital, some fighting for their lives and making miraculous recoveries, while others fought valiantly only to slip away.

The unspoken question in our house for so many months--How long would Verity be with us?--somehow evaporated. We submitted requests for therapeutic and adaptive equipment. We registered for the Support Organization for Trisomy family conference. We stopped subconsciously wondering whether our baby would leave us and simply enjoyed living with her.

Do you know what that is, friends?

Freedom.

Freedom from fear and worry.
Freedom from uncertainty.
Freedom from depression and anxiety.
Freedom to savor and relish the little things.
Freedom from expectations.
Freedom to simply...be.

I'd be lying if I said we never feel fear creeping in. (A bout with aspiration pneumonia terrified me as I watched my baby struggle to breathe.) And I'd be misleading you if I said I never deal with uncertainty, or if I said I have managed to perfectly enjoy and cherish Every Single Moment instead of being concerned with what's for dinner or whether the toilets have been cleaned recently.

But overall? Our lives are characterized by far more joy than nail-biting fear. This is a testimony to the grace of God in our lives, to the growth He has allowed us to experience because of the sweet and precious gift He gave us in Verity.

I've told friends that I feel as though we have come out of a long, dark tunnel, that we are finally able to see the light and the beauty every day even though some days are still really hard.

And that to me is FREEDOM.

The Spirit of the Sovereign Lord is on me,

    because the Lord has anointed me

    to proclaim good news to the poor.

He has sent me to bind up the brokenhearted,

    to proclaim freedom for the captives

    and release from darkness for the prisoners,

  to proclaim the year of the Lord’s favor

    and the day of vengeance of our God,

to comfort all who mourn,

     and provide for those who grieve in Zion—

to bestow on them a crown of beauty

    instead of ashes,

the oil of joy

    instead of mourning,

and a garment of praise

    instead of a spirit of despair.

They will be called oaks of righteousness,

    a planting of the Lord

    for the display of his splendor.

--Isaiah 61:1-3

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

Practical Love

My sweet and long-time friend Erin B. posted this on my Facebook timeline yesterday morning:

Beverly...do you have any ideas for those of us who live far away from you all, but would like to offer some physical support to you and your family?? Gift cards to restaurants or local grocery stores,....if so, what restaurants and grocery stores would be most helpful to you? We are definitely lifting you all up in prayer daily and would like to show our love for you and your family....and I am sure your other long distance friends would like to as well.

It wasn't long before other friends started chiming in with their desires to help as well. I confess I shed tears each time I read a comment. Honestly, I feel I don't deserve the outpouring of love and encouragement...and this is something God has been revealing to me about myself. I used to think these feelings were because I was independent and it has always been difficult to admit I need someone's help. But through a number of amazingly sweet and well-timed messages, cards, texts, a theme has emerged, one that is finally getting through my thick skull.

"You are so loved."

I don't know how many times I have read that sentence or a variation thereof in the past few months. In our family, we freely and frequently tell each other "I love you." I wouldn't have thought that receiving love was an issue for me, but somehow, just in the last couple of weeks, I've felt a growing awareness that YES, it is an issue (for whatever reason), and I need to stop skimming over these words and ponder, meditate, chew on the fact that I AM LOVED.

"I have loved you with an everlasting love;
    therefore I have continued my faithfulness to you." Jeremiah 31:3

After failures like those I detailed in my last post, it's easy to feel undeserving of good things. And yet, that is exactly the point of grace! We DON'T deserve God's love. We DON'T deserve the opportunity to spend eternity with Him in heaven. But He loves us and pursues us while giving us the choice to receive or reject Him.

As for me and my house? We choose Jesus. But regardless of our daily choices, actions, words, attitudes--His love never fails. It isn't dependent on our behavior, thank the Lord!!

And so, being reminded of these truths (there's Verity's name again! Oh, how much this little one is teaching me!)...I humbly and gratefully open my heart to God's love that is DAILY being poured out through His people. THANK YOU, dear ones, for having it in your hearts to serve, love, and care for me and my family!

In considering what some of our practical needs might be upon Verity's arrival, I have to confess that honestly, the biggest struggles will likely be the things I currently struggle with on a day-to-day basis. It's hard to admit what an enormous challenge it is simply keeping my family fed and semi-organized; I never asked for a large family (but I'm so very thankful we have one!), yet I feel the pressure of looking at least minimally capable of keeping it all together, lol! So when I consider that there's a chance we may be spending a lot of time at the hospital and/or traveling back and forth, keeping all these bellies fed (with minimal stress) will probably be one of the biggest challenges. I have some amazing teens who are becoming very capable in the kitchen, but keeping easy-to-prepare foods (that are reasonably healthy) within reach will be helpful for anyone doing meal prep.

So, ideas for gift cards:

• Commissary! I am pretty sure I saw signs posted that there are military commissary gift cards available.
• Trader Joe's (we love some of their frozen offerings like gnocchi and pasta and orange chicken--even Kenna can cook those meals!)
• We don't often buy groceries in our town because it's more expensive, but a chain grocery store we do have is No Frills.
• Some folks asked about restaurants...we don't eat out often, but Chick-Fil-A is a family favorite, and we've discovered we all enjoy Freddy's as well!
• There is a Pizza Hut in our small town (although the more refined tastes prefer the locally owned Adriano's Brick Oven Pizza, lol).
• While grown-ups may eschew McDonald's, there is also one of those in our little town, and it IS a treat for the kids!

The baby shower our church family is planning for Verity will likely be a money tree/gift card thing. We will use cash toward Verity's clothing and diaper needs and any special items needed for her care (we obviously still aren't sure exactly what she will need, so we don't really know either what items are covered by insurance, etc.).

Thank you, thank you, thank you for even asking how you can help. I often feel that there are such greater needs in the world...that our journey with a Trisomy 18 baby is, in comparison, something that "should" be so much easier to deal with than [fill in the blank.] But I can't deny that this road has been every bit as hard as--and probably even more difficult than--having our 6th baby while Daddy was deployed to a war zone for a year! I learned to ask for and receive help during that time, and I'm re-learning the importance of that same lesson.

"But God has so composed the body, giving greater honor to the part that lacked it, that there may be no division in the body, but that the members may have the same care for one another. If one member suffers, all suffer together; if one member is honored, all rejoice together." 1 Corinthians 12:24-26

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…

The Drawbacks of a Prenatal Diagnosis

Yesterday I read some articles published in the American Journal of Medical Genetics. These were sent to me by a lady on the Rare Trisomy Parents Facebook group in response to some questions I had posted. As one of the co-authors and collaborators of these and other studies (not to mention the mother of a trisomy 13 daughter), Barb is kind of a go-to person on the parent page. I so appreciated the information she sent me. The studies were quite thorough and well-presented, with findings related to concrete statistics as well as open-ended input regarding parents' experiences and emotions. In this blog post, I want to highlight some specific information from an article titled "Parental Hopes, Interventions, and Survival of Neonates with Trisomy 13 and Trisomy 18" (full citation follows at the end of the post).

I sat down with a hot drink and highlighter in hand to carefully read the pages I had printed. I confess I was not prepared for what I felt was the most stunning finding of all. See what you think after reading this paragraph:

"The single most important factor independently related to mortality before going home or before one year, even when correcting for all other factors (including congenital anomalies, interventions, and palliative care), was the presence of a prenatal diagnosis." 

A prenatal diagnosis?! Something I have been thankful for, the one thing we DO know with certainty--the knowledge during pregnancy that our daughter has full trisomy 18--that knowledge actually could have a negative effect?!

Wow. And yet, when I consider the words of the NICU doctor with whom I had a consultation, it completely makes sense. Hang with me and follow this train of thought: Parents, trusting health care professionals, receive information that may or may not be current...filtered through lenses of personal beliefs...relying on grim statistics that ignore (or are ignorant of) any positive outcomes...and under the influence of a variety within the health care field, accept sentiments that become a self-fulfilling prophecy and act accordingly.

The vast differences in outcomes and care plans for children with a prenatal vs. a postnatal diagnosis showed up in several ways. For those who had a prenatal diagnosis, the study found that parents have similar hopes; in fact, our personal answers fit right in with the general consensus of those who chose to carry their babies to term: "They hope to meet their child alive, take their child home, be a family and give their child a good life."

So what did medical providers recommend to these parents whose hopes are outlined thus?

"...the recommendations parents had from medical providers were homogeneous: comfort care at birth with the plan of not prolonging life was recommended to all parents."

Referring to other medical articles/resources, the authors of this study noted that these recommendations were probably based solely on the chromosomal diagnosis, as evidenced by many position statements, hospital policies and authors who consider that interventions for these conditions are futile. (There's that word again! "Futile." Used multiple times by the NICU doctor with whom I spoke.)

Postnatal diagnoses for the respondents in the study came an average of 6 days after birth. So any interventions came as a result of medical personnel doing their jobs:

"Children with a postnatal diagnosis received ventilator support according to their respiratory status only (and not related to decision-making or genetic label)."

Next, there was a clear difference even in what constituted "palliative care" for babies with a prenatal vs. postnatal diagnosis.

"It seems that palliative care, for children with prenatal diagnosis, is directed to a goal of having as short a survival as possible, with medications being prepared even before delivery. Giving the child an optimal death seemed to be the goal of palliative care after a prenatal diagnosis of trisomy 13 or 18."

On the other hand:

"For children with postnatal diagnosis, palliative care may involve numerous different neonatal interventions...[to include] transfusion for weakness and inability to feed, tube feeds for comfort, CPAP for dyspnea, surgical closure of meningomyelocele, surgery for omphalocele, ventriculo-peritoneal shunt, and even 'cardiac surgery for comfort' (symptomatic child with a VSD). It is likely that many pediatricians would not describe such interventions as palliative."

There is certainly a lot more I could write or quote, but I think you get the general idea. Having a prenatal diagnosis can actually be a lot more harmful than being blissfully unaware of a chromosomal issue until after the baby arrives and makes his or her needs known.

So...what does this mean for us as a family? Further, what does it mean for YOU, perhaps a friend of our family, or even a random stranger who stumbled upon this humble blog entry? Here are some things I've been pondering...

First, as a parent of a baby girl with a prenatal diagnosis of full trisomy 18, I feel extremely grateful to be acting on the offensive instead of the defensive. While so much is out of our control, and though many things are uncertain about Verity's physical and mental status, simply KNOWING that any medical providers we encounter at delivery are likely going to have similar biases going into L&D with us helps us prepare to communicate firmly and effectively.

Second, as I read more of how other parents dealt with decision-making and care plans for their children, I feel much comfort in the fact that Ted and I are in agreement with each other, and also the fact that our "game plan" looks pretty much like what I see outlined in the report:

"Decisions were influenced by the state of the child and whether he was vigorous or weak with parents in general not wanting to impose undue suffering. Parents of almost half the children discharged on comfort care later decided to consider surgical interventions, because their child exceeded expectations."

In the absence of any concrete information at this time, we have simply said that we will wait and see what Verity needs when she needs it. As our genetic counselor told us, "Verity herself will let us know what she needs when she's born!" We plan to give her whatever support she needs, particularly help with respiration and feeding, as those are common issues. Anything that will not cause her undue discomfort but enhance her ability to breathe and receive nourishment--that's a given. That's our first plan of action. And then we take one day at a time and see how she's doing.

Now...what can all of this mean for YOU--and bless you, if you are still reading! Well, I can only encourage you to be willing to share information as you have the opportunity. Many health care providers are stuck in the "dark ages" when it comes to a diagnosis such as trisomy 13 or 18. And since these are fairly rare issues, it stands to reason that the average parent will know very little as well. Maybe someday you will be in the position of sharing information with a distraught couple who needs to know truth?

"Based on our findings and the current literature, if a baby is born near term, with a weight above 2.5kg, without a complex congenital anomaly, the chances of survival to discharge and to one year of age are significant. Our data about ventilator support and early survival are important. Poor respiratory drive immediately after birth is common. This support can often be removed after a short time and allow survival to go home. Sometimes, prolonged survival occurs, especially in neonates without complex cardiac anomalies or other significant adverse associated diagnoses. Infants with a prenatal diagnosis generally do not receive ventilator support, unless parents decide for interventions before birth."

Verity seems to fit the description of a trisomy 18 baby who may very well "exceed expectations." She does not have any complex cardiac anomalies or other "significant adverse associated diagnoses." It makes me wonder how many other trisomy 18 babies might have stood a chance at beating the odds and allowing their parents more time to spend with them on earth...if only they had had the opportunity for care before receiving a diagnosis. As the article queried, "It is important to examine decisions to withhold/withdraw interventions and whether they are in the best interest of neonates and whether our goal for these children is a good death, or is it a good life?"

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NOTE: This post refers to and quotes the following article, noted in italic text throughout the post:

Janvier A, Farlow B, Barrington KJ. 2016. Parental hopes, interventions, and survival of neonates with trisomy 13 and trisomy 18. Am J Med Genet Part C Semin Med Genet 999C:1-9.

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...

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

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

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

...she might live.

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

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

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

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

But.

Sigh.

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

And I am utterly, completely overwhelmed.

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...

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

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