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.
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
Lo
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
A few weeks ago, we made funeral arrangements and chose a burial plot for Joel. The whole experience was “marked by the intense irrational reality of a dream,” as the dictionary defines surreal. Since when is “plan funeral” or “decide where to bury baby” on any pregnancy checklist? Where is that section in What to Expect When You’re Expecting?
But there I was, flipping through the yellow pages, deciding which funeral home to call first. Biggest ad on the page? Best known funeral home in Hanover? Kenworthy it would be, I decided. The receptionist was kind and empathetic. Mr. Kenworthy himself would need to answer my questions, she said, and he called back that very evening.
Jeff and I had already decided that if and when Joel passes, we will honor his life at a simple private graveside service. Mr. Kenworthy explained what the funeral home’s role would be in picking Joel up from the hospital and coordinating with the cemetery trustees to make arrangements for his burial. Our main tasks were to decide where he would be buried and to chose a casket. He urged us to decide where we ourselves would one day be buried so that Joel would be beside us at that time and encouraged us to talk to family members about available plots near great-grandparents, etc. He also gave many tips about various local cemeteries so we could choose wisely.
Expecting that Joel’s burial could cost up to a thousand dollars or more, and planning to make several calls to get price estimates from the main funeral homes in the area, I asked what costs to anticipate. I was shocked to learn that Kenworthy arranges for the transportation and burial of infants and stillborn babies free of charge. This has always been their policy. Maybe other funeral homes have a similar policy, but who wants to go through a conversation like that more than once? It was a relief to not have to make more phone calls. Such moments of unexpected provision are the kind that bring tears to my eyes, but I managed to finish the conversation without belying the emotion I felt.
A few days later, we asked my parents for their advice about where to bury Joel. My maternal grandparents and a few other relatives were laid to rest at the York Road Cemetery, which is along 116 across from the Bair’s Mennonite Meetinghouse, where my mom attended as a child. It’s a beautiful location for a cemetery, high on a hill overlooking a nearby farm; it will be a wonderful place to meet our Lord Jesus in the air on the great day of His return! And it ‘just so happens’ that earlier this year my parents were gifted four plots in our family’s area of the cemetery by some of my mother’s Herr cousins who don’t plan to use them. My cousin, Stanley, is a trustee for this cemetery, so my mom made arrangements to meet with Stanley and Leroy Ness, the man who has faithfully cared for these grounds most of his working life. Stanley confirmed what Mr. Kenworthy had suggested, that Joel’s tiny casket will be able to share a plot with one of ours some day, if the Lord tarries. So, thanks to my parents’ generosity, and the generosity of those who gifted the plots to them, the only charge for burial will be casket and the actual digging of the grave. Leroy wasn’t excited to hear that this might be in February, as the ground will be frozen and digging will be harder and more expensive then. Stanley and we assured him that we could arrange for help with that task, and any of you who know Leroy will appreciate how much this made him (and us) smile. 🙂
Thus we chose Joel’s final resting place. And he kicked, and kicked, and kicked most of the way home, in an uncharacteristic display of movement, as if to say, “I’M NOT DEAD YET! I’M IN HERE, MOM! CAN’T YOU SEE I’M TRYING SO HARD TO MAKE IT?!”
A labor and delivery nurse on the “Loving With Grace” team at York Hospital who coordinates palliative care for babies like ours told me recently that we are ‘so far ahead’ of many in our shoes because we have already made these arrangements. Maybe we’re too far ahead? Joel’s not gone yet, and I certainly don’t mean to betray him by planning for his demise when we truly don’t know the end of the story. Yet I’m Type A enough to want to be prepared in advance for every possibility. The last thing I want is to be in those post-birth moments, trying to weigh our options and make arrangements from the hospital. So, now my mind can rest, knowing that we have a plan… while wishing we will never need to use it.
One of the most overwhelming aspects of this T-13 experience has been the incredible outpouring of love and support expressed in such a wide variety of ways by an astounding number of people! We haven’t needed the Thanksgiving season to remind us to be thankful for all who have shown the love of Christ to us in very practical ways, but it does seem to be the perfect time to express that thanks here.
Galatians 6:2 has come to mind often during the past four months: “Bear one another’s burdens, and so fulfill the law of Christ.” So many of you are truly bearing this burden with us, making it so much lighter, and we are deeply grateful.
The ‘fourth mercy’ of our most recent ultrasound day was not having to cook dinner when I got home. While God has given me the grace to maintain my composure quite well at all the various appointments we’ve had for Joel, I’ve noticed that I tend to be uncharacteristically exhausted afterwards. The kids also want to talk about Joel more than usual on those days, and I often find myself mentally distracted, wishing for time to just be alone to think. A sweet friend didn’t know all of this, but several weeks ago she asked, “When is your next ultrasound?” and followed my answer with “We’ll be bringing your dinner that day.” It was truly a blessing to anticipate not only their kindness but also their visit, and to have an extra hour+ in the evening to process all we had learned.
God has amazingly timed so many other expressions of love and given them to us at just the moments we’ve needed them… a Facebook message or a card in the mail or a text. We’ve received more communications in their various forms than I can respond to in a timely way… plus phone calls, books, gifts, a handmade blanket, hugs, and yes, more food… a jar of soup… a gallon pail of homemade applesauce… a loaf of homemade bread, etc. Another friend gave us a meal, not knowing it would correspond with another ultrasound day. Yet another dear friend even offered to make meals regularly for us between now and delivery; completely astounding… overwhelming… and humbling. I’m tucking some of these away in the freezer to be prepared for the ‘whenever’ of Joel’s delivery, and it is a comforting thing to know that preparations for that event are underway quite a bit earlier than normal (for me), due to someone else’s generosity.
It has not been easy to be on the receiving end of so many kind and thoughtful gestures. I tend to be of the opinion that it’s our responsibility to raise our kids, and that our decision to welcome as many of them as He chooses to bless us with does not entitle us to extra help from others. We don’t feel that anyone owes us any unique support to enable us to maintain this crazy lifestyle we’ve chosen! With this attitude, it’s been hard to let go of my determination toward independence and accept help during this unique pregnancy. I always expect a pregnancy and a new baby to increase my workload, and at times I think, “I can get through this one just fine too!” Sometimes I want to scream, “Enough already!” in part because of my stubborn self-sufficiency, but also, to be brutally honest, because every sweet word or gift reminds me that Joel is not ok… that all of this help is being offered because my baby is expected to die.
This is probably more of the reason my heart resists being on the vulnerable, receiving end of things than I would ever want to admit. But, being ‘loved’ in such tangible ways has helped me to realize and admit that yes, this pregnancy is different. Yes, Joel is probably not going to be with us much longer, and even though I am not physically sick or on bed rest, this thought alone has been emotionally taxing. There have also been many more appointments than usual, and the mental energy need to process all that we’re learning individually and with the children does take a toll.
When kindnesses are shown, we know we need to see them as expressions of God’s love and care for us during this season, given through His people, and just be ok with being “the helped” rather than “the helpers.” And, we are encouraged when we remember: this is just a season! We look forward to entering a new season in the near future and being able to be on the ‘giving end’ once again!
Joel's Journey 