My soul melts away for sorrow; strengthen me according to your word!

This is my comfort in my affliction, that your promise gives me life. (Psalm 119:28, 50 ESV)

Saturday, January 28, 2017

When Caregivers Don't

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

Tuesday, January 24, 2017

Practical Love

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

Monday, January 23, 2017

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 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.

Sunday, January 22, 2017


A few random updates...

  • The leg pain I was having as a result of hamstring muscle spasms finally--after nearly 3 weeks--is all but gone. Thank you, Jesus!
  • My mother-in-law will arrive Saturday, January 28, to stay with us indefinitely. I am so thankful we will have her here to help with life in general as well as when Verity makes her appearance.
  • Not knowing what the future holds, Ted and I have been going on date nights like crazy...or as crazy as a married couple with 8 children can be. We've seen Hidden Figures (excellent!), watched the on-stage musical The Pirates of Penzance (very fun!), and attended an open house for Ted's DO. During one of these dates we discovered that Olive Garden isn't nearly as good as it used to seem before actually living in southern Italy.
  • I did ask on the Trisomy parents page if "practice breathing" in utero was any indication of what Verity's respiratory abilities might be after birth. The answers varied from "it doesn't really indicate anything" (meaning those parents' experiences were that their children had problems despite ultrasounds showing the diaphragm moving) to "it's a good sign" (meaning those parents' children did great). So...yeah.
  • Our wonderful church family is planning a couples' event to celebrate Verity's life in the form of a baby shower/potluck/fellowship. It was very touching to learn folks wanted to do something like this for us, and our small group leader's wife has been asking me about it over the last week or so. Once again I turned to the Trisomy parent page to ask for advice and input, which I passed on to Connie, and this is helping us plan for a February 4 event. My initial response was to wait until after Verity was born so we could see what she and we might actually need (although preemie clothes and diapers come to mind), but a couple of moms encouraged me to think about doing it sooner rather than later because I may very well not have the time or mental/emotional energy after Verity is born. Good point. I am grateful for the love and support we have from our friends and family in Christ...and that includes loved ones near and far.

Thursday, January 19, 2017

This Week's Appointments

We had two appointments on Tuesday (both of which Ted was able to attend with me): Verity’s ultrasound followed by my first OB visit with one of the doctors who may very well be there for her birth. Dr. T was actually the one who called me back in September when the amnio test results confirmed the Trisomy 18 diagnosis, and he is very much like I pictured him—a grandfatherly, (extremely) chatty gentleman who is personable, kind, and compassionate. It was a bit hard to get a word in edgewise with all of his various stories, but overall, I like him, and we were able to give him a copy of our birth plan as well as two research articles that I want to be sure our doctors read ahead of time. This afternoon he has a meeting with other doctors on our team, during which they will be discussing our case, and I requested that he share the birth plan and articles with everyone involved. Prayers that this actually happens would be welcomed…

Anyway—the appointment itself was uneventful but allowed us to verbally emphasize our wishes concerning supporting Verity at birth based on her physical needs and not simply her diagnosis alone. Then, since we were his last appointment of the day, Dr. T took us to the Labor & Delivery floor, as we had not yet figured out exactly where we need to go when the time comes. I feel much better just knowing how to navigate all the corridors and elevators, lol. A nurse gave us a quick tour of the area and answered some questions; she was going to peruse our birth plan as well before giving it back to Dr. T to make copies of to place in my chart and pass around.

The ultrasound showed that Verity continues to grow, holding firmly to that 4th percentile, but at least she IS gaining. They estimate her to be about 4 pounds, 1 ounce, which honestly doesn’t sound so scary, especially since I have seen much lower birth weights in both Trisomy AND healthy babies who are born prematurely! This alone gives me peace going forward; even if I were to go into labor this week, for example (not that there are indications that will happen!), she would stand a much better chance than if things started rolling a month ago. I think we were kind of expecting early labor based on what we learned initially, but after reading that a third of T18 babies actually come post-term, I’m actually starting to assume that will be our story. I know one should never assume, but somehow it seems almost more likely than not, even though I can’t explain why I feel that way. Not that I WANT to be pregnant that long, and perhaps it’s a bit of a denial of reality, trying to delay the inevitable transition that MUST be made no matter when it happens.

At any rate, Verity gave us some lovely views of her little face, showing poochy cheeks and growing hair. She is as active as ever, and her “practice breathing” in utero (diaphragm moving up and down) makes me wonder if she will be one of the fortunate T18 babies who actually DON’T need respiratory help. I have no idea on that score…perhaps a question to ask my Trisomy community, but really I don’t know if anyone can tell us anything about that or not.

Chubby cheeks!

Arm across face

Hair is growing! Funny how we can see it's longer than last time!

Sweet little fist...looks like she's sleepily rubbing her eyes!

We didn't get great 2D profile pics this time, but this was the best.

Sunday, January 15, 2017

What Does Being Pro-Life Mean?

Eleven years ago I stood in the auditorium of Canyon Ridge Christian Church and wept as the worship team sang “Blessed Be the Name of the Lord,” the chorus of which had played in my head only a week before. I had missed church the previous week because I was in an emergency room, where I learned that I was miscarrying the tiny baby that had only been developing in my womb two months. Losing a baby after bearing three healthy children was an earth-shattering experience for me: I had simply never before considered it to even be a possibility.

A week after this loss, I sat heartbroken watching families in our church holding little ones for the baby dedication ceremony taking place, a special event on what is known as Sanctity of Life day. Grief hit me like a tsunami. I found myself all too aware of the beauty and preciousness of life, a bittersweet comprehension running deeper than the mere head knowledge I harbored before Loss—Death—struck.

Now, Sanctity of Life Day 2017, I have an even deeper understanding of what it truly means to be pro-LIFE. In the 11 years since that miscarriage, I have borne 5 more children to term, lost one before the two-month mark, and am 34 weeks into the most difficult of all my 11 pregnancies, a pregnancy that has a specific diagnosis with an extraordinarily high abortion rate. 

And yet, there is so much more to the pro-life issue than having babies.

When I was in college, I thought being pro-life revolved around politics and peaceful protests. In reality, it has much more to do with our everyday priorities than stepping into a voting booth or holding up signs. I’ve learned that different people may feel passionate about different aspects of pro-life issues—but the common thread is believing all humans have dignity because we are created in God’s image. The question is, how does that belief play out in our daily lives?

Ultimately, it’s about being pro-human…and I love this well-thought-out treatise by Ann Voskamp on the issue.

What does it look like to be pro-human? I suppose there are countless ways to support and affirm the dignity of life. In our family, here are a few things that come to mind when I consider what this means in a practical sense:
  • We may not have “planned” to have a big family, but…we do. J
  • We honor and cherish elderly friends and family members.
  • We educate people on the reality and horrors of human trafficking and support efforts to reach those trapped in this darkness.
  • We sponsor children in other countries to provide better opportunities for them and their families.
  • We pray for and, as we are able, support those who are fostering and adopting children.
  • We pray for and, as we are able, support those who reach out to the needy and forgotten.

These things are all well and good...but let's be honest: there are times when being pro-life, being pro-human, is hard. Aborting Verity simply because of her Trisomy 18 diagnosis has never, EVER been an option, but carrying her and preparing for whatever life may be with (or without) her has its own set of challenges. Still, we are not shaken in our belief that Verity's life has value and dignity simply because she is created in God's image...extra chromosome and all. 

How are YOU called to affirm and support life?

Saturday, January 14, 2017

Quick Update

I was holding off on writing an update, intending to wait until after I had had my OB appointment yesterday. I was originally scheduled to see the military women's health team one more time on January 9 before transferring all my care to the university medical center; however, I ended up going in for an appointment on January 3 because of my leg pain (related to the hamstring spasms that began the week after Christmas). The doctor didn't really tell me anything helpful during that visit, but she did order a follow-up Venous Doppler test to make sure the blood clots I had experienced had not moved into the deep-vein system. Thankfully that test showed much improvement with nothing to be concerned about, but unfortunately there was just not much anyone could tell me about the muscle pain, which was the whole reason I had called in the first place.

Anyway, we all decided that it would be best to just skip the Jan. 9 appointment, and they scheduled my first OB check-up at UNMC to be Friday, January 13. I had anticipated this appointment by pouring a fairly significant amount of time into composing a birth plan, a first in all my delivery experiences. [I will post more about the birth plan later.]

It was a full day but I was looking forward to spending more time with one of the doctors who may, in fact, be delivering Verity. Happily, the muscles in my right leg, while not entirely relaxed, are at least allowing me more mobility these recent days and have not been so much of a concern. So I was glad that I could focus on communicating specifically with the doctor and sharing some of the research that we've been gleaning.

So it was rather surprising when the receptionist was puzzled when I checked in for the appointment: her computer wasn't showing my name anywhere on the daily schedule. Some digging divulged that the appointment had been cancelled (by the patient???!) and rescheduled for Tuesday, January 17. This does happen to be convenient, since our next ultrasound is that afternoon and the two appointments are now back-to-back, a request I planned to make going forward surely would have been nice if someone had notified me!! Particularly since I would have avoided a rather tragic end to the van's right mirror if I hadn't been driving downtown that day. Sigh.

So--all in all, really there is no news! Today marks 34 weeks. I'm mentally gearing up for 8 more weeks of being pregnant, since about 1/3 of Trisomy 18 babies come post-term and I haven't had any rumblings that indicate early labor...guess we'll see!

Saturday, January 7, 2017

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.

Wednesday, January 4, 2017

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 20th 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…

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…