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.



Still Waiting

I’m starting to feel badly for all of you, knowing you are feeling badly for me!  I wish I could hurry this process along as much to end the collective waiting and interceding as to end my own.  Literally thousands of people from up to ten countries have viewed this blog, and that seems like too many people to keep in suspense!

The doctor assures us that this long wait is typical, especially with a breech baby, and once we get to a certain point things could move quite quickly.  Contractions are manageable, and I’m more grouchy about not being allowed to eat than I am about the pain. Truly, I say that with a smile.  God is granting continued peace and patience.

So, please go about your day knowing that we are in good spirits, and praise Him for all the ways He is sustaining us!


We are overwhelmed by the tremendous outpouring of love you’ve shown in the past 24 hours.  Knowing that you’re praying us through this induction and delivery is a true source of comfort and strength.  Our older kids are also seeing and sensing how very much they are loved through each of your messages.  Thank you!

I wanted to drive in the opposite direction of the hospital today and go anywhere but here!  But we arrived and had begun the induction process by noon.  As expected, contractions have been slow to start.  We are waiting for more progress yet feeling peaceful about God’s timing.

For Jeff and me to have 10 hours alone to talk, rest, etc… is exceedingly rare.  We are trying to make the most of this ‘date’ by reading a book together.  Jeff is reading aloud Hints on Child Training by H. Clay Trumbull (Elizabeth Elliot’s grandfather), and we’ve enjoyed discussing it chapter by chapter and praying for each of our children.  Hopefully this will help us push the ‘reset’ button on  our parenting when we get home.  We’ve also been cleaning up our email inbox, replying to messages, organizing photos, reading the news… just trying to stay busy and distracted.  :-).

Now we are going to try to get some sleep and continue to hope and pray for Joel’s arrival by morning… but God knows.

As usual, our doctor and nurses have been wonderful.  The perinatologist and midwife on duty tonight both have experience with breech deliveries, so we are all the more hopeful that Joel will be born before they leave.

Thanks again for your many prayers. God is answering and we are grateful











The End of Joel’s Journey

I have five draft blog posts waiting to be finished; one for each week of the remaining five weeks of our pregnancy.  But today we learned that we actually have no weeks remaining.  Joel has reached the end of his brief journey on earth and is safe in the arms of Jesus.  As of my last post, I felt so ready for closure… so ready to be delivered… so ready to move on.  But now, so suddenly, I’m not so ready.

While visiting on Thursday evening with dear friends who had stopped by to bring meals for us, I realized that Joel had been very quiet all day.  “When did I last feel him move?” I wondered.  I’d been on-the-go all day, so I wasn’t surprised that he’d been sleeping.  But when he didn’t stir even after I sat down to talk, I made a mental note to watch deliberately for kicks.  Joel’s movements have been very limited and weak in comparison to the gymnastics of our healthy babies, and I’ve been used to long periods of stillness from him.  But when he didn’t stir all that night nor the next morning after waking, and when he didn’t respond to my eating of sweets nor to my poking/prodding/coaxing throughout the next day, I began to suspect that he had passed.

I had been asked to call if I didn’t detect movement in a 24-48 hour period, so this morning, I made the call I dreaded to make, knowing it would set into motion a plan I didn’t want to follow.  Jeff and I made our way to the labor and delivery department at York Hospital around noon, where a brief ultrasound confirmed no heartbeat.  Joel is now breech, but the perinatologist, doctor, and nurse all strongly recommend an induction of labor rather than a C-section.  They said we should prepare for this process to take 2 or 2.5 days and that because of his condition and its possible implications for my health, we need to start within the next two days.  So, tomorrow morning we will get a phone call to let us know when a bed is available, and we’ll head back to the hospital.  We could have begun immediately today, but we felt we needed to spend this evening with the children, to process the news with them and help them pack to spend the next few days with my parents and sister/cousins.

To say that I am overwhelmed at the thought of such a long induction would be an understatement.  The longest I’ve been at the hospital prior to any of our four natural deliveries is 2.5 hours!  I know that God will be with us through it, and I know that you will be praying.  These are tremendous comforts.  I’ve been having strong contractions while I’m moving around, but they don’t continue when I’m at rest.  Though it usually takes up to two weeks after an intrauterine fetal demise for natural labor to begin, God is able to bring this about even sooner if He wills.  Tonight, would you please ask Him, with us, for strong,  continuous, effective contractions that will bring about real and natural progress toward Joel’s delivery?  Any help toward reducing the medications needed tomorrow or the overall time needed for induction would be a great mercy from God.

We see God’s fingerprints of grace on our lives during the past week to prepare us for this earlier-than-expected delivery.  My leg has gotten significantly better each day and for the past two days has been almost completely pain-free.  Certainly this is attributed to your prayers and maybe also to Joel’s flip back to a breech position.  Sweet friends and family have brought meals each day this week, allowing me to keep my leg elevated more than usual.  I was mentally resisting this help, “knowing” we still had five more weeks to go and not wanting to be a burden.  But now, as I realize that it was actually our week immediately prior to delivery, I see how God was providing these meals so I would feel more rested and also more caught-up on housework prior to labor.  Isn’t He good to provide exactly what we need, even before we realize we need it?

Thank you, dear friends, for loving us in such practical ways and praying for us through this journey.  We don’t know if we’ll be able to blog from the hospital, but we’ll attempt to update Facebook after Joel is delivered.



Part 12: Fifth – and Final? – Ultrasound

Jeff and I tend to be minimalists when it comes to the expensive aspects of prenatal care like ultrasounds.  “Only the ones absolutely required and necessary” has been our typical approach.  So to have had FIVE ultrasounds for Joel has seemed excessive, yet we are attempting to be as compliant and cooperative as possible, appreciating that our doctors have a strong interest in monitoring how Joel’s health affects mine and also realizing that the knowledge they gain through scanning will help them feel confident about his birth plan.  This time, it’s not just about us or about Joel but truly about cooperating with the team of people we trust to guide us through a relatively rare and uniquely individual situation.

Jeff and I went for ultrasound five on the last day of 2015, and it was brief and routine by comparison to U/S four.  It was also our last scheduled U/S, unless there should be some obvious change necessitating another one.  Otherwise, we will have one last brief scan just prior to birth to confirm Joel’s position and take final measurements to assist in last-minute birthing decisions.

There were a few new observations:  Joel’s heart has a VSD (Ventricular Septal Defect), in addition to the ASD (Atrial Septal Defect), which had been noted previously.  The technician also noticed that he most likely has a diaphragmatic hernia, which is allowing his lower organs to migrate into the chest cavity.  That conversation went something like this:

“And here’s his lung…. (long pause)…. actually, I’m wondering if that’s his liver.  It looks like he might have a diaphragmatic hernia, and that might be part of his liver.  Did they mention a hernia to you during the last U/S?”

“No, but at this point, nothing will surprise us.”

“I’ll need to get Dr. B to come and confirm that.”

This tech was among the best we’ve had yet.  I constantly marvel at how many wonderful, amazing people there are in the medical profession.  Sure, we’ve met a handful of distinctly non-favorites, but the phenomenal ones far outnumber the others and have blessed us tremendously!

Dr. B did confirm the hernia.  Neither this nor the VSD make any practical difference in the anticipated outcome or delivery considerations for Joel; they are just new tidbits of information to add to the overall picture of his condition.

In the “good news” category, Joel is now head-down and weighing in at an impressive 5 lb. 15 oz.!  Dr. B believes that he will be able to be delivered vaginally if he remains in this position, and that he will not have to undergo a reduction of the fluid in his bladder to allow for birth.  His head circumference (currently 8-9 cm) is proportionate to his abdominal circumference, allowing him to fit through the birth canal.  Previously, Dr. B had suggested that if his abdomen was too large or too compromised for a successful birth, they would consider using a procedure similar to amniocentesis to draw the fluid out of his bladder just prior to delivery.  As of now, that is not the case, which is truly good news for both of us.

We again spent time talking about our priorities and expectations for Joel’s birth and for comfort care for him afterwards, when/how the children will meet him, etc.  We left this U/S and consultation feeling quite hopeful about the possibility of avoiding a C-section.   We also feel confident that everyone is on the same page and in full agreement with Joel’s birth plan and very thankful that Dr. B will be the ultimate decision-maker for everything related to his arrival.

We’re excited to see God answering some of our prayers related to Joel’s birth and would appreciate your prayers for a successful, natural delivery.  I am preparing mentally for every possibility, as I’ve said before, yet I remain hopeful that God will grant us this very strong desire of my heart.





Part 11: God of Grace and God of Glory

January 1, 2016

Friends of my sister’s family, who unexpectedly lost a daughter shortly after birth and recently became aware of our situation, reached out to us and included this observation in their message:  “It appears that you and your family are choosing to lean into God instead of pushing against Him. (Or you choose to write on the good days).”  They were correct on both counts:  We haven’t felt the need to push against God, and yes, I do tend to write on the good days.  Since then, I’ve been thinking a lot about this.  I write when I have time, which is rarely, and if I have time, it’s because it has been a good day.  But I have had quite a few “bad days” lately, today being one of them, and I don’t want to neglect to share even the difficult times.  My goal is to focus on God’s grace and all the blessings for which we are thankful, but I don’t want to give the impression that I/we don’t struggle – often – with many aspects of life in general and with this pregnancy and its anticipated outcome.

This year, I’m very thankful the holidays are over, mostly just because I’m eager to get back into a regular routine with the children and put all the excitement and extra sugar behind us!  But it was hard to feel festive this year, and I needed to slip into ‘acting’ mode to get into the spirit of the season for the kids’ sake.  I could have fast forwarded through every aspect of what our culture says “Christmas” needs to be and just gone on with daily life and not minded a bit.

Now we have six weeks until Joel’s due date, and I feel I can, at last, make final preparations, physically and mentally, for the next big event in our lives.  While I’d like to keep him safe inside me indefinitely, the human mind also longs for closure, and toward this end I’m glad that time continues to move us forward, getting us ready to meet – and say goodbye to – our sweet little guy, whether we’re ready or not.  My to-do list includes writing Joel’s birth plan, presenting a growing list of questions to the ‘Loving with Grace’ nurses, packing for the hospital, making special preparations to help all the big siblings through the time of his birth and passing, etc.

This past week has brought discouraging pain in my right calf from ‘insufficient superficial veins,’  (I despise the word varicose), pain that I’d be experiencing even with a healthy baby.  It began rather suddenly, possibly when Joel migrated into a head-down position.  Some days the pain is mild and on other days it is excruciating.  This is simply one of the many costs of motherhood, one to expect to pay when you’re in the third trimester with baby six at age 40!  I suspected this could be an issue during this pregnancy, and I should be thankful (and I am) it’s waited this long to start.  I should be thankful (and I am) that it’s only affecting one leg.  I should be thankful (and I am) that Jeff’s been home for Christmas vacation and that my mom has also been a tremendous help.  I should be thankful (and I am) that I have amazing big-kid helpers who can do almost anything around the house.  I should be thankful (and I am) that the ultrasound of my leg showed no blood clots.  And I should be thankful (am I?!) for my first-ever, oh-so-fashionable pair of compression stockings, which seem to be offering some relief.  I’m not complaining (am I?), but I do feel overwhelmed on ‘bad’ days at the thought of limping for 6 more weeks.  Then I feel ashamed, because I know many people – even many of you – who live with chronic pain that has no end (like delivery) in sight!  It’s one thing to be cheerful on good days, but to stay cheerful on days filled with pain? That’s a much greater challenge and a ‘test’ I’m not always passing.

Just as the angst of the teenage years make both the teen and the parents ready for the ‘leaving of the nest’ and as the aches and pains of the older years cause individuals to long more for the perfections of heaven, so the third trimester was designed specifically by God (as I like to think) to make a mother ready and willing to do whatever it takes (labor and delivery) to find relief from the discomforts of the last 12 weeks!  I’ve reached “that point” a bit too soon this time around, I’m afraid… weary, and counting the remaining days a bit too often!  But I knew this would be the case when we chose to welcome another baby to the family, so I’m aiming for the ‘patient endurance’ perspective and trying to stay positive and busy… hoping that these last 6 weeks pass as quickly as the first 34!

The hardest part of dealing with the aches and pains of the third trimester is the running dialogue with the little voice in the back of my head that in past pregnancies has said, “Heartburn?  Feeling breathless?  Restless feet?  Vein pain?  So tired?  It’s all for a great cause!  It will be worth it in the end!  In just a few weeks, you’ll be snuggling your baby, and all of this will be just a memory.”  Now, that voice tries to talk, but it quickly gets contradicted by the jeering reality that we won’t be bringing a baby home this time.  Jeff reminds me that it’s still all for a great cause.  Joel’s brief life is worth even the discomforts, and I do gladly make these sacrifices for him.  But now that we’ve changed our calendars to 2016 and there are just 42 mostly-empty squares between now and “then,” the dread of not taking a car seat to the hospital and not bringing Joel home with us is starting to loom large, making it just a bit harder to push through the final miles of the marathon.  Normally these six weeks would be a happy flurry of washing baby clothes (blues, grays, and greens this time!), setting up the pack-and-play, rearranging Caleb’s room to make room for the crib, stocking up on baby supplies, etc.  Long ago, I put these tasks out of my mind, yet now that we’re on the home stretch, we’re becoming acutely aware that we’re not doing our well-rehearsed getting-ready-for-baby routine.

When you grow up in the Mennonite church singing acapella hymns in four-part harmony, these tend to be the songs that come to your heart and mind during difficult seasons, no many how many hundreds of other wonderful songs of all types you’ve learned in the meantime.  I’m sure this is true for all of us; the familiar songs of our childhood become the ‘comfort foods’ our souls crave when they are hungry.  Today, as I thought about the coming year and all it could hold – not just for us in anticipating Joel’s birth and death – but also for our nation politically in an election year, for our tumultuous world as the return of Christ draws nearer, and for the church, which seems to be sliding more and more toward compromise with weak and worldly thinking, this is the song that’s been on ‘repeat’ in the playlist of my mind: Mennonite Hymnal 434:  God of Grace and God of Glory.  I’ll leave you with the words and music, in case you, like me, are needing WISDOM and COURAGE for the facing of this hour… for the living of these days.

There are many versions of this song on YouTube, but I really wanted to post a version that sounds exactly like the one in my mind.  Imagine my delight to quickly spot this acapella rendition being led by none other than Lloyd Kauffman!  Lloyd was the director of the Rosedale Chorale in 1993-1994 and also the summer chorale tour to Europe in 1995, both of which I was privileged to be a part.  He and his wife, Mary, will always have a special place in my heart, and I know this affection is shared by many of my RBI friends who will read this post.  Enjoy.

God of grace and God of glory
On Thy people pour Thy power
Crown Thine ancient church’s story
Bring her bud to glorious flower
Grant us wisdom, grant us courage
For the facing of this hour
For the facing of this hour

The hosts of evil ’round us
Scorn Thy Christ, assail His ways
Fears and doubts who long have bound us
Free our hearts to faith and praise
Grant us wisdom, grant us courage
For the living of these days
For the living of these days

Cure Thy children’s warring madness
Bend our pride to Thy control
Shame our wanton selfish gladness
Rich in things and poor in soul
Grant us wisdom, grant us courage
Lest we miss Thy kingdom’s goal
Lest we miss Thy kingdom’s goal

Save us from weak resignation
To the evils we deplore
Let the search for Thy salvation
Be our glory evermore
Grant us wisdom, grant us courage
Serving Thee Whom we adore
Serving Thee Whom we adore