We Don’t Get to Choose

While discussing Joel’s birth plan with our doctors, when we were still in the preparing-for-any-possibility stage, at one point I confidently said something of this nature, “Whether Joel is born alive or whether he passes before birth is of little consequence to me.  We know that the outcome is likely to be the same, regardless of when he passes.”

Since the moment we learned that he would indeed be born dead rather than alive, I’ve recalled this conversation quite often with a great degree of shock that these words ever came out of my mouth.  (I should say born ‘still,’ as it’s much more discreet and much less unpleasant.  But in the context of this thought, born dead just seems more truthful.  “Alive” and “dead” are opposites.  “Alive” and “still” are not.  But I digress.)  It was a statement made in ignorance, and once I was in labor, preparing to deliver our lifeless baby, I regretted it.  It was now of great consequence to me.  How much harder it was to labor knowing that Joel was already gone and that there would be only a horrible, deafening silence in the room when his body was delivered into the world.

In the context of planning his birth, my assertion had made sense.  I was reiterating my strong desire for a natural delivery, stating that I didn’t want to plan a C-section in order to be sure that Joel wouldn’t pass during labor, and I also wouldn’t want to do an emergency C-section if Joel’s heart-rate dropped during labor, etc.  I’ve read quite a few blogs of parents in similar situations, and many couples have made the opposite decision, for a variety of reasons.  It was very important for them to hold their baby alive, and they were willing to undergo major surgery to make this possible.  I’ve also learned, for example, that for many Catholic families, having their baby born alive in order to be baptized is essential.  But since that rite isn’t part of our religious belief or practice, our decision was made more for pragmatic reasons.

“Pragmatic” sounds and feels quite emotionally detached, and couples who’ve chosen otherwise might think we were heartless, unfeeling, and selfish to not want to take every possible measure to give our baby a chance to be born alive.  This debate would segue perfectly into a post I have drafted entitled ‘Trisomy Ethics.’  I had hoped to discuss this topic on the blog prior to Joel’s birth, mostly for the benefit of interacting with other trisomy parents with whom we’ve connected in the blogosphere and put into words the perspective we’ve developed as a result of this journey.  But that’s not the point of this post, which is coming – I promise – in another paragraph, or two, or three!

Call me selfish, but I’ve been through one C-section, and the recovery was 100x more difficult than recovering from a natural delivery.  I wasn’t eager to repeat it.  We’ve also paid for one C-section, and the costs were 2-3x more exorbitant than the costs of a natural delivery.  We weren’t eager to repeat that either.  (Ruefully speaking, we’ve now also paid for one VBAC induction of a stillborn, breech baby, and the costs were significantly greater than the costs of our C-section… go figure!  But the burden is actually far less for us this time, which is also another post for another day.)  For us, the risks of major surgery and the financial burden both needed to be factored into the equation, since we had five other children to come home to after all was said and done.  As much as I knew I would rather hold Joel alive and have him pass on to heaven in our arms, I knew in my heart the risks were greater than the potential benefit.  The physical and expected-financial price we’d have to pay for possibly a few seconds, minutes, or hours with him, if he even survived delivery, was too great to justify striving for that unknown.

As it turned out, this ‘choice’ we made in birth-planning ended up being one we would not have had to make.  It wasn’t a possibility we would have needed to prepare for.  We didn’t get to choose at all.  Joel was born still, and it was heart-wrenchingly difficult.  Which leads me back to the whole reason I started this post – to share a quote that been tremendously helpful to me throughout this journey.

Soon after Joel’s diagnosis, one of our neighbors, Melissa, posted the following quote on Facebook:

Plain and simple: trials expose unbelief and promote real belief…God intentionally tests us through various forms of resistance to establish our belief and integrity. Through the process we learn He is the One who sets the terms for our discipleship, not us. – Denton

I still have no idea who Denton is, and I only yesterday told Melissa just how much this thought has ministered to me, but that last phrase has been on replay in my mind regularly since I first read it.  HE is the One who sets the terms for our discipleship, not us. 

It’s obvious to see how the big-picture of our journey with Trisomy 13 makes this quote so applicable to our lives. God has allowed us to carry an unwell baby and deliver him stillborn to expose our unbelief and promote real belief… to establish our belief and integrity.  It’s one of the terms he’s set for our discipleship.  But the times that God, through His Holy Spirit, has whispered this truth into my heart most meaningfully have been in the smallest details of life, both related to Joel and otherwise.

Born dead or alive?  I don’t get to choose.  HE is the One who sets the terms for my discipleship.  Cephalic or breech?  I don’t get to choose.  HE is the One who sets the terms for my discipleship.  The day of his birth?  The time of day?  The doctors and nurses on duty?  The attitudes and responses of all with whom we’ve interacted throughout the journey, both positive and negative?  I don’t get to choose.  HE is the One who sets the terms for my discipleship.

The dog chews one of the kids’ sneakers?  The 2-year-old has a potty-training accident?  I’m interrupted 30 times in 30 minutes while balancing the checkbooks?  I don’t get to choose!  GOD is the One setting the terms for my discipleship.

For my DISCIPLESHIP!  How HOPEFUL is this?!  To think that each of the experiences we face, whether good or bad, easy or hard, comfortable or painful, welcome or unwelcome, is a part of a tailor-made discipleship course, crafted by God, the very Maker and Sustainer of the universe, the same God who gives us every breath we breathe, just for us.  Individualized just for ME… because He loves me and wants me to become more like Him.  What a refreshing thought!

This is certainly not a new concept.  It been expressed by countless Christ-followers, worded in as many ways, since His time on earth.  But this succinct little quote came at an important moment in my own journey and has reminded me so many times:  it’s ALL for my discipleship… for my GOOD.  Scrubbing seven pairs of muddy sneakers after a long warm-Sunday-afternoon hike?  Enjoying a breathtaking sunrise?  Wiping up yet another spill?  Enjoying snuggles at bedtime?  Responding to a sassy attitude?  Receiving an encouraging card/text/e-mail?  Being overlooked or ignored?  Why would I resist my involuntary enrollment in this course?  Rather, I should embrace and be thankful for all these circumstances that are providing opportunities to become a true follower of Him.

What trials are you currently facing?  And how is God using them to disciple you?  Feel free to comment here or reach me privately at jeffandgwenyth@gmail.com.  It would be a privilege to pray for you!

 

 

 

The Most FAQ

The question I am asked most frequently since Joel’s passing is one I was often asked during our pregnancy: “How are the children doing?”  I had been hoping to blog an answer to this question before we knew he had gone to be with Jesus, but now I’ll be able to share both before-and-after perspectives.

First, here are precious pictures of each of them holding Joel’s hand:

The short answer is that I think our kids are doing remarkably well.  They talk about Joel often.  Remembering him and reminiscing about various aspects of our experience has become as natural as anything else in our daily routine.  There are moments of tears, still, when we look at pictures or talk about what life would be like if he were here as a healthy member of our family, which is what we had envisioned when we first learned of his existence.  But mostly, the kids are finding unique and meaningful ways to commemorate his life.  They’ve put a lot of energy and time into ‘little’ things that are having big therapeutic value.  None of these has been prescribed for them or suggested by anyone, they’ve just developed naturally.

Hannah and Caleb have recently been obsessed with learning to harmonize.  This started during rehearsals for our church’s Kids’ Choir musical.  They both had short solos and/or a few lines to sing with a friend.  One of the parts was to harmonize with a melody line, and this proved to be a frustrating challenge.  Thus they grew curious about harmony… what is meant by alto/tenor/bass and how to sing those parts.  The two of them began playing and singing and working on this throughout each day.  One of them will start singing a song – hymn, popular tune, kids’ song, whatever – and then the other will join in, attempting to harmonize.  It’s been quite a fun and enjoyable season of life for me to hear them enjoying music together and trying something new.  You can imagine that this trial-and-error approach also results in much dis-harmony at times!  😉

As to how this has become part of their healing?  The song they’ve sung most often is ‘Audrey’s Song’ by the group Selah, otherwise known as ‘I Will Carry You.’  I shared that here on the blog shortly before Joel’s birth.  The words of this song have ministered to all of us but most especially to Hannah and Caleb.  It also inspired them to write ‘Joel’s Song,’ which they have spent quite a few hours playing/singing/refining together… just a simple, tween-written tune, but meaningful as it expresses their love for their brother and the fact that he will always be in our hearts.  Two friends gifted us with the words of “It Is Well With My Soul” in various forms, so this song has been high on their ‘play list’ too.  You can watch one of their practice sessions here:

Hannah and Caleb: It is Well With My Soul

Shortly before Joel’s birth, our kids each received a teddy bear from our church’s pastor and his wife.  Their daughter lost a baby boy named Isaac around 21 weeks gestation, and in response to their loss have been providing ‘Isaac Bears’ to families/siblings going through similar situations.  We took these bears to the hospital, and when the children came to visit while I was in labor we sent one home with each of them.  They brought them back when they came to meet Joel the next morning, and we now have this photo (below) that we really treasure of Joel’s tiny hand on one of these bears.

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During read-aloud times recently, Hannah and Caleb* began to crochet hats, scarves, and blankets for each of their “Joel Bears,” as we’ve renamed them.  Caleb finished a previously started project as a blanket for his bear, and then Hannah made an adorable little hat for Lydia’s bear, and they just kept going.  Hannah crocheted a collar and matching blanket for Lydia’s bear, followed by similar apparel for her own bear and Sarah’s.  Caleb then crocheted for Julia’s bear.  Here are the finished blankets:

All of the kids have been so ministered-to by the gifts we’ve received in memory of Joel.  A sweet lady we had never met but who had read our blog – a friend of Jeff’s stepmother – brought a crib-sized quilt containing the pictures we shared of each of them holding Joel printed onto the fabric!  It was an amazing gift of time and talent, and upon seeing it we all cried!  It was such a surprise… so personal and such a gift of love.  A friend from church made a pillow with a knitted cover that has Joel’s initials on one side and a heart representing each of us in illusion-style kitting on the other.  It matched a hat she had previously made for Joel.  These are just two examples of the many such gifts we’ve received that have spoken volumes to all of us – and especially to the kids – about the love, care, support, and prayers they represent.  The meals, cards, gift cards,  etc. have not only been practical demonstrations of help and encouragement but truly a testimony to our children as they see the body of Christ in action.  So many of you have been the ‘hands and feet of Christ’ to us, and we’re especially thrilled that the kids have witnessed this in such a first-hand way.  It inspires us greatly to do a better job going forward of being on the giving end of such care, as we now know how tremendously meaningful it was to us.

As for the younger three girls?  Well, they’ve drawn countless pictures for Joel or of Joel, they play with their bears, and they talk freely about him.  Julia still kisses my belly when she’s feeling sad about not having him with us, and Sarah writes in her journal.  Their grief was as intense as that of the older kids, though they’ve expressed it in different ways.  Sometimes, the comments catch me off-guard, such as when Julia recently said, “Mommy, I really want you to have another baby soon.  One that doesn’t die.”

By far, Lydia has been the most verbal and unfiltered in her comments about her baby brother.  During our pregnancy, she would reserve most of her conversations about Joel for naptime and bedtime.  When I was laying with her while she fell asleep, she would almost always initiate talk about him.  Early on, at just a few months beyond her second birthday, she started like this:  “Joel is really sick.  He’s going to go to heaven.  God has special medicine in heaven that will make him better.  Then he’ll come back here.”  I’d have to tell her, “Yes, we think Joel will go to live in heaven because he has so many problems with his body.  It doesn’t work well enough for him to live with us here on earth, so he’ll get to go heaven to live with God.  God will give him a new body that works perfectly!  But he won’t be able to come back here.  He’ll get to stay in heaven to worship God.  Then, when it’s our turn to go to heaven, we’ll get to see him there, and we can all worship God together!”

Now, almost daily when we’re snuggling and talking before sleep, she’ll say, “I really miss baby Joel.  I’m really sad that he can’t live with us.”  Or, “Joel’s body didn’t work well.  So we had to put it in a box – ummm, a tas-ket – in the ground.  Now he has a new body that works!”  Another frequent topic for her conversations is about how Joel’s mouth “works” now.  We’ve come to realize that she was troubled by the fact that his mouth was open when he was born, and we couldn’t close it.  A few weeks ago she asked me if Joel’s mouth was still open in heaven.  I explained that Joel had a brand new body that worked perfectly!  His new mouth can open and shut just like ours, and he can sing praises to God with it.

It’s fascinating to hear the thoughts of all of our kids as they make sense of this new concept and the accompanying vocabulary.  When meeting a new friend whose family also had to say goodbye to a stillborn trisomy daughter and are now expecting another (healthy) baby, one of the big sisters ended the conversation by saying, “We hope our new baby lives.”  It’s sad that 2-year-olds and 4-year-olds have to have those types of hopes at such an early age, yet simultaneously precious and honest.  What even I have taken for granted – that our babies would live – we now no longer just ‘assume.’

Julia (5) has recently taken to praying prayers like this:  “Dear God, you know we really miss Joel.  And we want to go to heaven really soon so we can see him.”  Mommy and Daddy and the big kids look at each other with raised eyebrows and wide eyes during these kinds of prayers, and we smile too.  We all know what she means.  “Soon” is a relative term, so yes, we hope we get to see him soon!

All in all, I think the kids are dealing with their grief in really healthy ways.  I love that we are all together, every day, so that music, crocheting, picture-drawing, and conversations happen naturally and are shared by all.  God continues to give us much grace, peace, and even joy as we remember Joel together.

An upcoming post:  The Second Most Frequently Asked Question.  Anyone want to guess what it is?  😉

* P.S.  To those of you who might think it odd that Caleb knows how to crochet – DON’T WORRY!  He’s 100% BOY.  You can’t have four sisters and not learn some of these skills along the way, but this is not his primary hobby!  He’d always rather be fishing, shooting, building, tinkering, carving, riding his bike, etc., but on rare occasions during winter read-alouds, yes, he does crochet.  🙂

Joel’s Funeral

Well, here we are, almost four months later, and I still don’t really want to write this post.  There aren’t many any times I want to think about Joel’s funeral.  During the first two or three months, looking at the pictures brought up all sorts of negative feelings and ugly emotions within me… so I avoided them.  It wasn’t the pictures themselves but the memories they represented that made me want to just forget it all.  But now I can look at them without the bitterness, and they’re part of Joel’s story, and ours, so here we go…

First, I want to thank Carla Long, my “oldest” friend (in that we’ve known each other since we were four and our parents have been friends for even longer), for coming to the graveside service to share in that private event and take these pictures.  I’m very grateful to have them, even though the funeral itself was mostly unpleasant.  I know that sounds crazy and confused, but it just ‘is what it is.’  Our moments with Joel were brief, and in that this was truly the end of our time with him, it needed to be recorded.

Soon after Joel’s Trisomy 13 diagnosis, Carla messaged me with an offer to come to the hospital and gift us with her photography services.  Months later, when we found out that Joel had slipped away to heaven before birth, we knew we wouldn’t be able to have the kind of in-hospital photo session we had hoped for, with the sweet newborn-and-family pictures we had envisioned.  After he was born in a very fragile condition, and given the time-frame we had with our living children, we knew our hospital time would be brief and overwhelming.  After much deliberation, I texted Carla and told her we were going to decline her offer.  I would do many things differently if I had the benefit of hindsight to help me plan a perfect re-do, including making sure that we ordered the timing of visitors and our leaving to allow for that photo session.  But I love that Carla thought of this and offered to be there; truly a gift!  While planning Joel’s funeral, I suddenly realized I would need pictures and immediately knew I could text Carla and she would come.  She did, and thus we can look back on that cloudy day and reminisce.  (By the way, you can check out Carla’s work at https://thejourneyisthelifephotography.com)

Secondly, we are deeply grateful to Eric Kenworthy and Kenworthy Funeral Home for taking care of all arrangements, including setting up a tent and chairs, free of charge.  I am still astounded by this generosity.  We were so blessed by Mr. Kenworthy’s compassion as he guided us through each step of the process.

And last, but certainly not least, we are thankful to my cousin, Stanley, who dug Joel’s grave, coordinated with Mr. Kenworthy, and stayed after the service to lower Joel’s casket and cover it.  Stanley is a wise, yet humble, man who serves many people in very quiet and unassuming ways, and to have his help during this season of our lives was very meaningful to me.

I ended the day of Joel’s funeral, January 15, 2016, with this post on Facebook:

On the evening of January 15, 2000, Jeff and I were on our first date: pizza with anchovies at Genova’s, some shopping at Christian Light bookstore in York, and then root beer floats at the York Street Treat. How could we have known that exactly 16 years later we’d be laying our 6th child to rest in a cemetery just a mile or so from that very ice cream shop? I’m thankful we couldn’t see into the future then (and that we can’t now), and grateful to be sharing the highs and lows of life with such an amazing man, guided by such a great God!

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January 15, 2016… an unseasonably warm day… cloudy, and muddy…

 

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Jeff opened the service and shared a few reflections on Joel’s life.
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My favorite picture from the day.
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I spent most of the funeral distracted with the management of the two littlest girls… answering questions and helping them understand what was going on. I hadn’t come prepared mentally for this, and it was obvious I hadn’t prepared them adequately for the event.   Hindsight is 20/20.  Lydia also had failed to sleep that afternoon, in spite of my careful efforts to make sure she got a nap on her normal schedule, so she was tired.

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My chair was on an uneven spot of ground, so with my few remaining brain cells, I was concentrating on leaning hard to the left so I wouldn’t topple to the right!
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My brother-in-law, Troy, led in worship; pictured here with my sister, Rachel, and their three boys..
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My dad, giving the devotional.

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Most of Jeff’s family
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Jeff’s dad, Cliff, and step-mom, Laura, singing ‘Unclouded Day,’ which is our older   kids’ favorite song from their CD; they’ve listened to it countless times at bedtime.           Now it’s even more meaningful to all of us.

 

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Releasing balloons

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The big kids and a few cousins, arranging their ‘Joel Bears’ for a picture
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Joel Bears, which I will write about in my next post.
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Jeff’s mom, Linda
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Another special bear – and our first gift for Joel – from a very special friend.

 

Below are the pages of the simple bulletin we printed for the service.  Included was a poem Jeff wrote while I was in labor.  When Jeff read this aloud to me there in the hospital room, I instantly developed a mental picture of Joel in heaven that I love and have permanently framed in my heart.  The kids and we have had numerous discussions about whether there are babies and children in heaven or just fully grown adults.  A definitive answer doesn’t really matter.  I picture Joel as a man now… strong, tall, and broad-shouldered like his daddy with wavy dark hair and thoughtful, sensitive, penetrating brown eyes.  (He ended up having dark hair and brown eyes like Caleb, Julia, and me.)  I like to imagine that when I get to heaven, as Jesus first ‘wipes away every tear’ from my eyes and welcomes me to my eternal rest, Joel will be watching over his shoulder from a distance, waiting to meet me with a warm, strong embrace and lead me to worship at the throne of God.  Who knows?  When we actually get to heaven, likely all that will matter is glorifying God and not so much the meeting of those we loved on earth.  Either way, it’s gonna be ‘all good!’

Also, in a previous post, I wrote about how meaningful the song ‘All the Way My Savior Leads Me’ was to me during one of our ultrasounds.  I don’t think I’ve yet mentioned that after Jeff proof-read that post, he told me he’d been planning to include that very hymn in Joel’s memorial service.  It was such a sacred moment to realize that God had prompted both of us to meditate on the same song in response to what we were learning about Joel.

(I can’t find a way to clear the ‘bullets,’ so please overlook the poor formatting.)


JOEL DANIEL EYLER

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                                                       BORN SLEEPING JANUARY 12, 2016

                                                      LAID TO REST JANUARY 15, 2016


  Order of Service

   Welcome and Prayer                                 Jeff Eyler

   Reflections                                                 Jeff Eyler

  All the Way My Savior Leads Me            Troy Miller

    Devotional and Prayer           Carlton Stambaugh 

   What a Day That Will Be                           Troy Miller

   Balloon Release                                            Jeff Eyler

                                                  Unclouded Day                           Cliff and Laura Eyler

 

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      Our Longing

     Jeff Eyler

  • The pain is so real,
  • And the sadness we feel,
  • At the loss of Joel,
  • How we wish he were whole.
  • Jesus’ promise is sure,
  • So this trial we’ll endure,
  • Believing we again our son will meet,
  • Now in Heav’n made complete.
  • One day we will stand,
  • And embrace the man,
  • That we now long to hold,
  • But is silent and cold.
  • I envision the scene,
  • His eyes sparkling and green,
  • Strong and fit are his features,
  • Of God’s most beautiful creatures.
  • With open arms we embrace,
  • Chest–to-chest, face-to-face,
  • Joy and communion that will last,
  • Earth’s hardships have past.
  • But till then we must wait,
  • Knowing God’s good and God’s great;
  • Our days are in His hands,
  • Completely numbered, fully planned.
  • In this reality we rest,
  • For His ways are best,
  • So we’ll walk by His light,
  • Until our faith becomes sight.

 

  • All the Way My Savior Leads Me

  • All the way my Savior leads me, what have I to ask beside?
  • Can I doubt His tender mercy, Who through life has been my guide?
  • Heavenly peace, divinest comfort, Here by faith in Him to dwell!
  • For I know, whate’er befall me, Jesus doeth all things well;
  • For I know, whate’er befall me, Jesus doeth all things well.
  • All the way my Savior leads me, cheers each winding path I tread,
  • Gives me grace for every trial, feeds me with the living bread.
  • Though my weary steps may falter and my soul athirst may be,
  • Gushing from the Rock before me, Lo! A spring of joy I see;
  • Gushing from the Rock before me, Lo! A spring of joy I see.
  • All the way, my Savior leads me, O the fullness of His love!
  • Perfect rest to me is promised in my Father’s house above.
  • When my spirit, clothed immortal, wings its flight to realms of day,
  • This my song through endless ages: Jesus led me all the way;
  • This my song through endless ages: Jesus led me all the way.
  • What a Day That Will Be
  • There is coming a day when no heartaches will come,
  • No more clouds in the sky, no more tears to dim the eye;
  • All is peace forever more on that happy golden shore.
  • What a day, a glorious day, that will be.  (Chorus)
  • There’ll be no sorrow there, no more burdens to bear,
  • No more sickness, no pain, no more parting over there;
  • And forever I will be with the One who died for me.
  • What a day, glorious day, that will be.  (Chorus)
  • Chorus:
  • What a day that will be, when my Jesus I shall see,
  • And I look upon His face – the One who saved me by His grace;
  • When he takes me by the hand, and leads me to the Promised Land,
  • What a day, glorious day, that will be.

 

 

 

The First Month Without Joel

Our family has spent the past week remembering what we were doing ‘a month ago’ and commemorating Joel’s due date.  The older children were particularly aware of each of the significant dates:  Joel likely entered heaven on January 7th or 8th… we went to the hospital on the 10th… he was born on the 12th… he was due on February 14th… and he was buried on the 15th.  We wanted to visit his grave on one of these dates, but snow-covered cemetery roads or other plans have prevented us from doing so.  The Valentine balloon we bought to fill with Sharpie-written notes of love and then release still bops around the dining room ceiling, waiting for the perfect moment that never comes.  Maybe tomorrow?

Portions of the unfinished posts I had intended to write during the past five weeks have been tumbling in my mind during this first month without Joel.  Unlike the rocks that our kids put in their rock tumbler, which come out smooth after a few days, my tumbling thoughts are still rough and unpolished.  I’ve been largely uninspired to share them in this raw form and especially reluctant to write about Joel’s birth, our short hours together, his funeral, or my thoughts/feelings since then.  All of my purposeful planning ended abruptly after his death and birth, and the anticipation – even if it was the anticipation of loss – was gone.  Everything felt dark, empty, flat, and negative.

Being post-partum without a baby is much more difficult than I had expected.  Sometime during our pregnancy, Jeff was talking about the Biblical account in I Samuel 12 of David’s loss of his infant son.  According to this story, while the child was sick, “16 David pleaded with God for the child. He fasted and spent the nights lying in sackcloth on the ground. 17 The elders of his household stood beside him to get him up from the ground, but he refused, and he would not eat any food with them.”  Then the baby died, and “David got up from the ground. After he had washed, put on lotions and changed his clothes, he went into the house of the Lord and worshiped. Then he went to his own house, and at his request they served him food, and he ate.” 

Jeff anticipated that he might feel much the same after our own loss, and I agreed.  Gradually learning of Joel’s anomalies and diagnosis from weeks 14 – 35 of our pregnancy had given us much time for ‘anticipatory grief.’  Certainly this would greatly reduce the grief we would feel after his birth.  We would be ready to move on with life much more quickly than those who are shocked by the sudden loss of their unborn babies.  With this tidy little theory tucked away in my mind, I somewhat looked forward to being ‘on the other side’ of the pregnancy and indeed ‘moving on’ with life. 

Because of my hopeful, but unrealistic, expectation, I was quite shocked at how I felt during the first three weeks post-partum.  I had not factored in the plummeting hormones and the hollow, aching emptiness of not having a baby to provide the counteracting oxytocin, etc.  I had no baby waking every 2 hours at night to cause sleep deprivation, yet I still felt so exhausted.  There was no baby to nurse away the baby weight – or at least ‘explain’ it when out in public – and no baby to provide happy diversion for all the big siblings.  And all of this in the middle of February, which is already a notoriously uninspiring month for homeschool moms everywhere.  Even in the best of times, moms and kids alike are tiring of the school routine and have cabin fever with excessive pent-up energy.  I felt short-tempered and snappish (and had to apologize far too many times) as we tried to regroup and get into a new, post-pregnancy normal.  Tears came at very unexpected times and places, like the library.  I’m not one who cries easily or often and especially not one to cry in public, but I even cried while attempting to pay the fine for the books that were due on the day Joel was born and left quickly with kids in tow, offering no explanation to the poor bewildered library ladies.

I have struggled greatly with disappointment about the many imperfections of the short hours we had with Joel in the hospital and also at his graveside service.  Without going into details, both experiences felt chaotic to me and for a variety of reasons were not what I hoped or envisioned them to be.  In spite of trying to prepare, they just happened as they happened, and at both places I didn’t experience the type of closure I felt I needed.  I’ve comforted myself with the reminder that Joel’s entire life was about imperfection.  It was only fitting that our time with his fragile body and the memorial service to commemorate his brief life would be so marred by ‘anomalies’ too.  “So things didn’t go the way I wanted them too?  Well, neither did the pregnancy.  Let’s just chalk the whole thing up as one big mess and get over it,” I reasoned.  I can’t go back for a re-do of those moments, and gradually I’ve stopped dwelling on the ‘if-only-we-had-done-this-or-that’ wishes for a more peaceful ending.  It was what it was.  There are many things I would do differently if I had it to do all over again, but I pray I never will.

Another difficult aspect of coming home without a baby was how horribly quickly certain parts of life got back to ‘normal.’  While it’s NOT normal to have dozens of people stopping by to deliver food and gifts and it’s not normal to return from the mailbox with dozens of sympathy cards, other aspects of life were just too routine.  The day after we got home from the hospital, Jeff took Sarah to Claire’s restaurant for their regular breakfast date and then took a load of scrap to the recycling center before heading to Lowes and on to take measurements for a few jobs.  Work that had to be rescheduled because of Joel’s delivery was calling, and although Jeff paid bills, made phone calls, and worked on taxes in the hospital while waiting for ‘real’ contractions to begin, he still had a lot of catching up to do.  “Staying home doesn’t pay the bills,” he often tells the kids, and getting back to his typical schedule was healing for him.  It was also generally healthy for all of us, though it still reminded me that there was no baby here.  A baby would have resulted in some altering of the routine, but now, there appeared to be no need.  Hardest for me, our little girls never got the memo that post-partum mommies need extra physical rest and that grieving mommies need mental rest and time alone to process.  They needed ME, and rightly so, but I needed to be alone.  It was impossible to simultaneously meet these conflicting needs, so I just muddled through, doing the best I could and usually feeling like I was failing miserably.

When you have five kids, a dive right back into parenting is to be expected, and it began the moment they walked into the hospital room to meet Joel and continued very intensely especially during the first week.  Lydia hasn’t been away overnight often (ever?), so she was feeling very emotional about having been away from mommy for two nights and large parts of four days.  Everyone was sad.  The big kids were missing their normal routines and getting frustrated about feeling behind on their school work.  Though they had all had a fun time with cousins who put aside their own school work to make the days special for them, and though they were well-loved and fed while we were away, and though we had offers for play dates and babysitting, there was simply a lot of reconnecting and re-establishing that needed to happen during that first week.  They needed us to be together, here.  Then, during the second week, we needed to get back to school and re-set expectations for behavior that had been relaxed maybe a bit too much in an attempt to allow grace for the grieving process.  These were hard, yet necessary, days, so we plowed through them.

The positives?  Yes, they were/are many.  In the early weeks, it was just hard to see them.  Delivering Joel brought an almost immediate end to the all the discomforts of the third trimester.  Apart from a painful vein in my arm at the site of my IV, I felt better physically than I had in quite a long time.  I am still elated to not be recovering from a C-section, which (as one of the doctors said) would have been like adding insult to injury.  Not bringing a baby home means continued opportunity for good nights of sleep (for the most part).  Rather than being distracted while nursing, diapering, or settling disputes about whose turn it is to hold the baby or who has had the longest turn, I can spend extra time reading to the little girls or helping the older kids with schoolwork.  By his due date, we had cleaned the house from top to bottom.  We were able to enjoy sledding and snow tubing and roller skating.  Because he was born early and not on or after his due date (as were the first five), we haven’t had to wonder if Joel’s birth will prevent me from seeing Hannah, Caleb, and Sarah perform their roles in our church’s kids’ musical this coming weekend or mar their enjoyment of participating in it.  Recently, a younger mom who is eight+ months past the delivery of a stillborn daughter with trisomy 18 invited me for a visit and lunch in her home, sharing helpful insights.  Friends and family have brought delicious meals, sent cards with such thoughtful messages, delivered cheerful bouquets of flowers, sent texts and e-mails to remind us of their prayers, and given many generous gifts, including some very meaningful hand-made and/or personalized items that we treasure.  And I could go on…

While we’d rather have Joel here with us and would gladly give up sleep and all these other ‘positives’ for the opportunity to snuggle him longer, we are so grateful he didn’t have to struggle and suffer outside the womb with the consequences of his extra chromosome.  We feel great joy in knowing that he is completely whole as he worships our Lord and Savior, enjoying all the splendors of heaven.  To bypass the troubles of this world and go straight to Jesus?  What bliss!  Joel got the ‘Get Out of Jail Free’ card so early in life, and in my sorrow I have almost envied him!

Week four was a turning point for me, for no explainable reason.  My spirit felt a little lighter, the days seemed a little brighter, it was a little bit easier to feel patient, and little-by-little, my motivation and energy returned.  The tears came a little less often, and more predictably.  As we work our way through week six, it’s nice to feel mostly normal.  Knowing Joel’s diagnosis ahead of time truly did allow us to do some of the work of grieving in advance, though this process will be more on-going than I anticipated.

So, for all of you who have asked, “How are you doing?,” there’s the long answer… all 1932 words of it.  I’m sure you are glad that I usually just say, “We’re doing ok, thanks.”  🙂

 

 

 

An Update and a Few Favorite Songs

I’ve been wanting to share five songs that have become so meaningful to me over the years as I’ve wrestled with surrendering my will to God’s and understanding His sovereignty in difficult circumstances.  Two of them were introduced to me in the past few months of our Trisomy 13 journey and are now included among the favorites that have comforted me through this experience and helped me to express my trust in our perfectly wise, loving heavenly Father.

We came home from the hospital yesterday with deeply grieving and very tired children and have had two days of intense parenting… getting ourselves regrouped and working through a myriad of emotions.  Each big sibling is processing our loss in very different ways, so we find ourselves in need of much wisdom to know what each one needs from us and the strength to meet their needs.

Tonight I’m alone for a few hours while the kids are at AWANA, thankful for time to think through all that has transpired and listen again to each of these songs.  I’m sharing them here for any of you who would benefit from meditating on the powerful messages they convey.  Whether you already know them or this is your first exposure, I hope they will be a blessing to you.

Tomorrow, we will share a few favorite pictures of Joel.  His memorial service will be held graveside on Friday for our immediate family.  We wish we could extend the invitation to the many of you who have supported us in countless ways on this journey, but after much deliberation and weighing a wide variety of factors, a private service seems to be the most appropriate.  Thank you for your understanding and for your continued prayers.