A Year Later

It was a year ago that we went in for our first specialist visit to discover the extent of our unborn daughter’s heart condition. Katie was somewhere around 21 weeks and we had just celebrated Christmas. We laid our little girl to rest on March 19, and two weeks ago we were finally able to get her monument set. Here are a few haphazard but sincere thoughts regarding the last year.

We still love the little girl God gave us. We have no memories with her to treasure, no pictures outside of ultrasounds and echocardiograms save the ones taken at the hospital after she was delivered. So it is just raw love anchored in a future hope. We talk about her in heaven and the kids bring her up all the time. It’s amazing to me how real she is to them, even though they never got to meet her. But if Penny were our only child, I would still consider myself a father for the love I have for her.

The Lord alone is a refuge for the day of calamity. Truth led us and Compassion kept us. We were never outside the love and power of our God for a second, so even in that terrible tomb of a hospital room we were safe. Money could not have sustained us. Friends could not have kept us. Only a God who Himself had conquered the sting of death was enough.

Suffering is everywhere. We know so many who this year have lost children through miscarriages. We know so many who have suffered in other ways that are foreign to us. None of us can plant our flag on the island of suffering and claim it for our own. We all live in this sin cursed world and the lie of unique suffering makes fools of those who believe it.

Loss is debilitating. After Penny passed, writing was hard. It had been my- our- way of processing our emotions and sharing our burden with our friends and family. But then it just became hard to write. Or preach. Or go to work. Nothing seemed worth writing about after Penny.

Parents never give up hope. Whether addictions or relationships or health, a parent is usually the last one to give up. We talked to so many doctors and cardiologists and specialists and almost all of them (there was one exception I can think of) tried to convince us that Penny would pass away. And we tried to convince them that she wouldn’t. Does it matter that they were right? Not a bit. I appreciate that they wanted us to be emotionally prepared for her passing, but we wanted them to be medically prepared for her survival. It’s a parent’s job to believe all things, because that’s what love does.

Continuing to live life is not a betrayal of the dead. Laughing at a joke is not a sin. Enjoying a good meal is not a transgression. Playing with my other children is not evil. The people around us do not have to apologize for celebrating births and birthdays. We cannot hold the world hostage to our grief.

The wise build their house to withstand storms. I’ve been very thankful over the last year for our marriage, which has been a source of comfort instead of anxiety. It would have been difficult to repair a relationship while walking through this valley. Deal with problems early and don’t let anything come between you. If you wait to repair your ship until the storm is lashing the harbor it is going to be much harder. Not impossible, but harder.

Everything I learned in Sunday School is true. Well, maybe not quite everything, but the parts that came from the Bible were all true. God is faithful. Trust in the Lord with all your might. Jesus saves. I know it’s a season of society where many are abandoning the faith, but I cannot fathom what they are abandoning it for. “The words of the LORD are pure words: as silver tried in a furnace of earth, purified seven times.” (Ps 12:6). God has been faithful and true to His Word.

So here we are, a year later, perched on the edge of the calendar year. The same and yet different. Grieving and yet joyful. Tired but ready for the next thing. And thankful for all your prayers, all your comfort, and all of your love.

When God Says “It is Good”


It has been twelve weeks since we lost Penny and her death still weighs on our hearts daily. In a moment of tiredness I miss the daughter I never got to properly know. When my other three children are playing I grieve that they will not experience her joining them in their roller coaster ride of sibling play. It has probably been the mercy of the Lord that we stay busy, but both Katie and have both been longing for a day when we could really stop and think and process. That day finally came last weekend.

brown wooden cross on green grass field near lake and mountains during daytime

It has been hard to know what to do with this grief. Where is this grief supposed to go and what is it supposed to become? I have never found the Kubler-Ross model (5 stages of grief) particularly compelling or descriptive of my own experiences of grief. I know that in some ways we carry our wound of grief with us through this life until our hearts are healed in the life to come. But I had a sense that my grief was not yet pleasing to God.

So over the weekend I was reading Faithful Leaders by Rico Tice and came across a section where Rico lays out the questions he asks himself every morning and came across this:

Question: Rico, why is today a great day?

Answer: Because today is the day that God has planned for you, and if God says it’s good, then it’s good. Whatever God brings into your day -the things you’d choose and the things you definitely wouldn’t- he will work in them for your good.

Faithful Leaders, Rico Tice

And I realized that my grief would not be pleasing to God until I acknowledged His goodness.

In Genesis 1, God declares every day good. The Light was good. The heavens were good. The plants and animals were good. Every day was good. And then the cosmos was rent because of the lie that God is not good, and ever since that lie the world has been less like a garden and more like a wilderness. Like Israel wandering in the wilderness we cry out to God in anger that even the waters we stumble across are filled with bitterness. But then Calvary came along and God Himself drank the bitter dregs of our sin. The cross of our Lord has been cast into the sea of humanity’s bitterness and it has become sweet to drink. For those who have been purchased by Christ, every day is good.

March 19th was a day filled with pain and suffering. If I allow myself I can almost relive it moment by moment. We experienced enough pain on that day that if we allow it, it would dominate our hearts and poison our grief. Some might even think that reasonable, but it would just be another instance of believing the same lie that plunged our world into darkness. Instead, I believe the most definitive thing I can say about March 19th is that God was good to me. God was good to my wife. And God was good to Penny.

How can I say that? How can I believe in the goodness of God on a day like that? I can say it because of the Cross. The unceasing, life changing, overwhelming love of God is manifested in the cross, not in the circumstances of my life. And on March 19th the cross had not changed: God has still sent His only begotten Son to rescue a world full of sinners, of whom I am chief. The Father loves the Son with a special kind of love, but it was on the Son’s worst day – a day of pain and suffering – that the goodness of God was displayed with dazzling clarity. Salvation was born out of the collision between sorrow and love.

Many have shared with me how they prayed alongside of us and felt sure that God would heal Penny. Their own shock at her passing is almost startling. Why didn’t God answer our prayers? The short answer is that I don’t know. But I do know that when He didn’t, He was good to me.

And with that, I can weep like Jesus.


The Comfort of Concrete

It’s Spring in the Ozarks and that means thunderstorms and tornado warnings. When the storms come my children will comfort themselves beneath their warm blankets and clutch their fuzzy stuffies. They do this because they are children and they don’t know any better. They don’t know that the only thing their blankets can provide is a feeling, and feelings won’t keep you safe in the storm. My comfort comes from the cold hard concrete to which the framing of our house is fastened. And when I daily drive across Lake Springfield I take comfort in the concrete pillars that hold up my car.

Tailwaters Access (Springfield City Utilities) | MDC Discover Nature
Tail waters access, Lake Springfield

It may sound strange to get comfort from concrete, but the Scripture is replete with this imagery. Instead of concrete, it uses “rock”. Jesus tells us to build our lives on a Rock so that our house won’t collapse when the storms of life come (Matt 7:24-27). The Rock are the words that He speaks. When David feels like his steps are leading him to the pit he cries out “O Lord, my rock!” (Psalm 28:1) There is comfort in the Rock.

But we live in a juvenile world run by feelings, and so people cling to their blankets. Blankets do not save when the storms rage.

Two weeks ago – has it really been two weeks? – we were grief stricken. We were at our most vulnerable. There was no veil between us and the raw reality of Penny’s death. The doctor who delivered Penny and the head of the MFM clinic both offered words of consolation. “What” I wondered “will they say to us at this moment?” After they spoke, I wondered “Is this really the best they have to offer?”

Worldly wisdom is like a fuzzy blanket: it targets the feelings, but it could not keep us safe in the storm. In the end I interrupted the first doctor as he spoke and in retrospect, I wish I had kicked the second one out of the room. One of the less egregious but sillier things she said was “You can tell your children that instead of a baby, God gave you an angel.” I wanted to ask her if as a medical doctor or as a theologian she knew the difference between a human and an angel. Their words were untethered from any sort of truth and evoked the melancholy of a balloon floating away from the hands of a crying child. They were offering us what they could but they were ignorant of the great Consolation we already possessed.

What is getting us through the storm is the Truth we are standing on. Out of the abyss of death it rises up and while the storm rages above, our feet are sure and steady. Because we knew what and how to think, we could face our trial. Because we know the Truth, we can let our feelings serve us instead of mastering us. Truth may be terrifying, but it is never our enemy. “You shall know the Truth, and the Truth shall set you free.” (John 8:32) Behind all the gory realities of the world sinners have marred is the glorious God of creation and redemption, who is merciful, gracious, slow to anger, and abounding in steadfast love.

When I spoke at Penny’s funeral, I held a Bible in my hand. I had thought about choosing a passage of Scripture to read, but I could never decide on one because I could only speak out of the totality of its message: the beauty of God’s creation and the image of God in man / the bitterness of sin and the death it brings to all / the love of God in sending Jesus to die in our place / the hope of the Resurrection / the surpassing weight of glory that lies ahead. These truths are anchors for the soul.

But I would not have you to be ignorant, brethren, concerning them which are asleep, that ye sorrow not, even as others which have no hope. For if we believe that Jesus died and rose again, even so them also which sleep in Jesus will God bring with him.

1 Thessalonians 5:13-15

Katie Writes, too – Thoughts on Comfort

“You’re going to be depressed… ” 

“This is going to haunt you for a long time…”

 These are just some of the things that my doctors said on the day I delivered my still born daughter.  The books they gave us to read and give to our children were equally unhelpful. I understand that they felt they must say something to the situation, or commiserate with us and validate the grief we felt, and I’m sure they meant well. Had I not been a Christian the statements and “advice” they gave would have solidified my hopelessness, and made me fall deeper into despair. 

low-angle photo of lightened candles

But God! Even when they were saying those things, my heart was shouting “Not true! Your God has you in His arms, He is holding your daughter as they speak. And you have Hope!” Yes I am grieving the loss of our baby and the plans we had for her, and all the things we won’t be able to experience with her. We wanted a fourth child so badly, we had come so far, and we loved her like she was already here in our arms. We didn’t get to hold her while she was living, or introduce her to her siblings and family.  And for that I will always be sad, and grieve her absence.

But this was God’s plan. Even though it hurts,  and I wish it wasn’t.  I wish I didn’t have a stab of sorrow every time I remember I’m not pregnant, but even in the midst of that He is faithful,  and the peace I feel because of that is miraculous.

Nate and I were discussing the phrase “the worst thing that’s ever happened”, because we could use that phrase and people wouldn’t question it.  But it doesn’t feel right.  This is terrible, and painful… yet we still have peace and hope, even though to some it doesn’t make sense.  When I hear that phrase, the only thing I feel that it describes is being lost: not having Jesus as your Savior. Being lost is the worst thing that can happen! I remember that hopeless feeling. No peace could come, because I hadn’t met the Peacemaker.  I was miserable because I had tried to make myself feel better and I was so  tired. I had prayed so many times for peace, and truly never thought I would know what it felt to be at peace. Then finally one day, I saw Jesus for who He was; Holy! … and I realized I was never going to be good enough and I needed to surrender to that and accept His life and sacrifice for my righteousness.  Oh what sweet peace when I did! I never understood how until He was real to me.  I didn’t have to worry if I was good enough  because I knew I never would be, and God was accepting my faith as righteousness.

So now as we go through the worst week of 2021 I am hurting, but I trust Him.  I am grieving,  but I have hope. And I want to praise God for His never changing character,  His love, and peace He gives to His children.


The Words I Said At Penny’s Funeral

When we found out the week after Christmas that Penny had a serious heart defect, we were faced with the possibility that she would die. It was hard as a father to take that. We want our children to live. But we determined to the best of our ability to be good parents to Penny regardless of how much time we had with her, and that meant making choices that were best for her instead of what we wanted. I don’t know that made a difference in any practical way as the Lord left us little to do, but it made a big difference in the way we looked at things, in the words we said, and in the peace we experienced. As parents, we are God’s representatives in our kids lives. And that’s why I wanted to be the last to speak today, because I think that’s what I should do as a parent, even though it hurts.

One thing we wanted was for people to know Penny, and we knew they might not have a lot of time. So for those who followed our journey online, loved on us, prayed with us, believed and hoped with us, I can only tell you how thankful I am for you. Maybe there was some selfishness on our part as it felt good to share this burden with those we love,  but I mentioned to mom the other day how strange it felt that Katie and I were the only ones who got to meet Penny, and she responded that it felt like she was known through us sharing her story, and that made me pretty happy, because I am still a dad proud of his little girl.

Another thing we did was give her the name Penelope Rae, so that she would share a family name with her Aunt Tiffany, who is a godly young woman full of faith and strength, and she is fighting her own battle right now.

Katie had a special responsibility in all of this as Penny’s mom, and I’m really proud of her. I can’t imagine a more difficult thing for a mother to endure than what she went through five days ago, but I could tell when it was over that love and faith are greater than her sorrow, so I know she will be ok.

When Penny died, my heart broke as a father. And if a father was all I was, I suppose there would be no end to the depths of my sorrow. But I am not only a father; I am also a son. A son both adopted into the family of God and a son born again through faith in Jesus Christ. The only reason I can pray to God as my heavenly Father is because God the Father once walked to a gravesite to bury His own Son, who died a terrible death on a cross to save the likes of me. And in just a few days we will celebrate His resurrection, His defeat of death, and His endless Life. Because the footprints left by Savior lead away from the tomb, I know that one day this grave will also be left barren. So today I can bury my child in hope that the grave is not the end of Penny’s story.

At the hospital, Katie said to me that she wished Penny could have known what a great dad she had, which is probably the greatest compliment I could ever receive. I am blessed to have a father who showed me enough of the fatherhood of God for me to want to know God as my father. So I told Katie that Penny is with her real Father, the one that I would have tried to show her. But now I don’t need to show her, because she knows and understands better than I do.

Let us Pray

Father of our Lord Jesus Christ and God of all comfort

May we in this moment of sorrow yet taste and see that the Lord is Good

May our momentary grief be met with everlasting solace

And preserve our tears for the day of Comfort

No pleading is needed from this father

For you are the Everlasting Father

In goodness you granted us a child

And in love you received our child back to Yourself

Our eyes are fixed on You

Our treasure is in the heavenly places

And we continue our journey with the knowledge that Eternity is rushing towards us

And with eternity, our sweet Penny.



Penny’s First Words

My darling daughter,

It is March 19th, 2021, and there is a narrow window for me to write these words. The first wave of grief has receded and there is a calm before the tide brings in fresh sorrow. Deep within this raging storm of pain there is assurance, and hope, and even joy. The knowledge that you are now in the presence of our heavenly Father ballasts my soul and the storm cannot tear me loose from that anchor.

Most of us must pass through this veil of sorrow before we see the sights you now see. For most of us, eternity is a place where tears are wiped and wounds are healed. But for you, it is fresh joy. There are no wounds to heal; there are no tears to wipe. You have entered into that glorious place knowing nothing but the safety of the womb. The only pain in this is our pain, and as a father I will gladly bear that knowing you did not have to experience a life of hospitals and tubes and the clinical texture of cold steel. We handed you back to our Heavenly Father wrapped in the warmth of our love and safety.

Nevertheless, there are things that you will miss out on that I wish you could have known. I wish you could have known what kind of a woman your mother is. You would have seen strength and grace and faith in God. I wish you could have met your siblings, with whom you would have fought like all siblings do. Lily was so excited to have a baby in the house! Joshua has the most tender heart and would have fawned over you. And Luella, your oldest sister, would have been a second mother to you whether you wanted one or not. Beyond that there are a host of delightful, frustrating, loving, and quirky relatives and friends who would enrich your life.

We fought for you, my daughter. We fought in prayer and faith. We fought alongside a thousand saints who came to our aid. We fought with you, who beat the odds and surprised the experts until you had them believing!

But here we are: planning a funeral instead of a nursery. It would all be too much if I did not know that God had already saved your life long before I met you. How many times in the last twelve weeks have I asked God to save your life, and how many times did He whisper back: I already have!

When I was a boy I wondered what heaven was like and to be honest, it didn’t sound like the kind of place I wanted to be. It sounded boring. All those disembodied spirits flitting around aimlessly for eternity sounded more like a punishment than a reward. But now I know better. I know that all the best things of this life are just the seed and heaven is the harvest. I know that we are not trading what is real and firm for something that is ephemeral and faded. Where you are is dense with life compared to the mists below.

But another thing that bothered me as a boy was the children. When children die, do they go to heaven as children? The thought of a heaven where babies were stuck as babies and kids were stuck as kids made me sad for them. Could they not grow up? But I had it backwards: in heaven, we are all God’s children. In heaven I will be purged of my cynicism and my sin so that I can enjoy God in childlike joy along side of you.

I don’t know how all this works. I don’t who welcomed you or what your first words were. I assume that in the presence of the Word Incarnate all speak in the language of Eden or perhaps something even greater. I only know that in this backwards process of death and life, it is not me who will be whispering “Welcome home, Penny” but it will be you saying to me, “Welcome home, daddy.”


The Margins

As we hit week 32 of a pregnancy that by all accounts could have ended weeks ago, we are praising the Lord for His goodness and His grace. I am mostly thankful for you and your prayers, which I believe have made the biggest difference. We are thankful for the doctors, although by their own admission they have not been able to do much. Now that we are within shooting distance of a full term pregnancy, their attitudes are changing and we are starting to have discussions about what a delivery will look like.

stack of stones on brown sand

While we are people of faith and our hope and trust is in the Lord, we have never taken an attitude of superiority towards the doctors and nurses (and other health care workers) because we know that one day we may be relying on their skills and wisdom to save our daughter’s life. So when the doctors talk to us, we listen while keeping in mind that there is a side of the story that they don’t know: what God is up to. This update is to let those of you who have asked and prayed know what the doctors are saying, but like me, feel free to Pray Big.

On Friday we had another checkup and consultation with our fifth cardiologist. I joked that we were running each of them off and now whoever draws the short straw gets stuck with us! The team also consisted of a NICU doctor, an MFM OB, a palliative care doctor, and a social worker. The social workers knows what resources might be available to us since we live three hours away and we might need places to stay, etc… Fortunately we have a good support system at home but we also have friends in Kansas City who have offered us places to stay (Dan and Paige, if you’re reading I hope those offers are still open!) should we need them.

According to the cardiologist, Penny’s heart condition is stable but not improved, and she still has hydrops. The complications with her heart mean that they will not intervene until thirty six weeks gestation because their intervention would probably only cause physical pain and suffering with almost no chance of success. The NICU doctor walked us through what would probably happen following delivery: with Penny’s low heart rate she will probably not be able to sustain oxygen levels in her body, which will necessitate a breathing tube. She will also need to have tubes inserted to drain the excess fluids. There will be an electrophysiology team nearby in case her heart needs to be paced immediately. While Katie is recovering in one room, Penny will be in an adjacent room with a sliding glass door and I can go back and forth between the rooms to check on both and give Katie updates. Penny may be in the hospital for months, meaning that Katie will pretty much be living in Kansas City and we will be navigating this challenge.

This is all very different from our other pregnancies where we got to hold our babies immediately. All of our babies slept in the same room with Katie and got lots of cuddles and contact. It’s hard to think about the tubes and machines and pain that Penny will have to endure from day one. Treatment for her is completely dependent upon how she responds and while the doctors won’t put odds on her survival, they are constantly communicating to us the complexity of her issues. If treatment fails, the hospital will help us navigate the Covid restrictions so that family can meet their sister and their grand daughter before her short race is run.

We are living in the margins, and so far Penny has beat the odds. At week 20 there was little hope that we would make it to week 32. At week 28 and the development of hydrops the doctors were expecting her to die. I am particularly thankful to the MFM doctor who recommended the medicine Katie has been taking and which seems to be having a marginal effect, which has been enough to keep her alive. The margins are so tight. I asked the NICU nurse if there were babies who could sustain their own oxygen levels even with a low heart rate, and she said that she had seen it in the sixties or seventies, but not the fifties. Maybe Penny will be the first.

I ask these types of questions because while it is their job to help us think through all the terrible things that might happen, I believe it is my job to help them think about all the good things that might happen. Even the miraculous things. I don’t want them sticking and cutting and prodding my daughter if they don’t have to. I remember our first baby’s scream of pain when they drew blood from her heel and I know that every daddy instinct I have will be to protect my child from pain. So I hope and pray and ask that Katie will get to hold Penny as she held our other kids, and that Penny will come home and meet her siblings who are busy preparing for her arrival. Lord willing there will be no more updates until week 36. Until then, we are living in the grace of God.


Hope Deferred

Yesterday morning we returned to Children’s Mercy Hospital in Kansas City. It had been four weeks since our previous visit but in the mean time Katie had seen her OB and we had another echocardiogram at the local clinic. Penny has been gaining weight, growing, and moving around a lot. So we had a lot of hope in our hearts for the visit to KC. I had even wondered if we might witness a miracle and be told that her heart block had cleared.

Our first appointment was for an ultrasound with the maternal fetal medicine folks at 9AM, so we decided to spend the night in KC and celebrate Katie’s birthday and Valentine’s day a little early. After an evening of fondue at the melting pot and exploring the Ikea in Kansas City – where Katie and I not only got along but brought back some furniture for the church, which we assembled this morning in record time and without arguing, thank you very much – we had a bit of a restless night and early morning thanks to back pain and pregnancy insomnia. The silver lining was that over the course of the day I manged to go to the Roasterie three times.

In that first ultrasound we got some great pictures of Penny as she yawned for us, sucked her thumb, and performed a lot of acrobatics. She may be the most active of all of our babies, so that’s encouraging. Dr. Mundy, the MFM doctor, came in to tell us that there are some new developments that are not good. Penny now has hydrops, a condition where fluid is building up in two or more compartments of her body. Additionally, they observed some thickening of her heart muscles.

As we went into the echocardiogram room, I had already determined not to try and watch the whole thing, so I read some CS Lewis and got some work done while Katie fell asleep on the chair (thank you, Rita, for being so gentle and allowing her to get some rest!). Penny does not like to cooperate with these exams, so Rita got as much information as she could and then disappeared. We waited a long time. Maybe an hour. We learned that waiting is bad – it probably means a group of doctors are conferencing. When they came in, we met our third cardiologist as well as an electrophysiologist. There were two others present around the little table in our room, but it was the first time we had an all female team. Which, to be honest, was not good. Everyone was very kind and everyone felt the need to tell us how sorry they were. “Don’t be sorry, yet.” I replied. Later I would have to say, “You have no reason to be sorry or apologize, you have done nothing wrong.” It seemed like when the meeting started they were saying that they needed to know what we wanted, as if they needed us to make some kind of decision. But about 1/3 of the way into the hour long meeting, I realized that they weren’t actually telling us anything new. Katie realized that soon thereafter and asked, “So do you guys want us to decide something?” to which they all said no. Basically, they just wanted us to know that things are not going well. I probably came as close to getting frustrated as I have throughout this experience, but my internal compass told me that response was not helpful.

Then we sat there for a while longer, maybe another thirty or forty minutes, and waited for another group of doctors to come in. Who again, wanted to know what we wanted. At that point, I wanted a multiple choice test instead of an essay question. The answer we gave them that seemed to help them move on is that we want to make the best decision for Penny possible, that we would rather take the risk of her passing away in utero then to prematurely delivery her just so we could spend time with her, that we understood that post delivery interventions may not be possible, and that we do not want our daughter hooked up indefinitely to tubes and machines and subjected to unnecessary painful procedures that have slim to no chance of success. I found myself saying out loud all the things that eight weeks ago I hoped I would never have to say. Parents make choices every day that impact their children, but never have I had to make decisions of this magnitude. While hard to say, they were relatively simple to make: we cannot control things outside of our control. We cannot gratify our own emotional needs at the expense of making responsible decisions for Penny. We have been entrusted with the life of another for a season and while we do not know how long that season will be, we will do our best and leave the rest to God.

We did get a prescription for some medicine that may increase Penny’s heart rate and thus either keep at bay the progression of hydrops or, in the best case scenario, improve her condition. The side effect is that it will increase Katie’s heart rate and may increase her insomnia or make her jittery or anxious. We will return to KC in a week to see if this has been effective, and at that point we may have to make more – harder – decisions. We are living week to week at this point.

So we started the day with hope, and our hope had to be deferred to another day. But we still have hope. It has not been destroyed. I have hope because Penny loves to move and kick, which is a good sign. The other day she kicked my hand and I felt her strength. I have hope because God loves a last minutes rescue: He doesn’t always part the waters until Pharaoh’s army is pressing in or show up until His servants are cast into the fiery furnace. The NICU doctor told us that she would consider it a miracle if Penny came to full term. Of all the prayers that God has ever answered for me, this would by far be the most clear example of His intervention in the natural affairs of man, and I would love to witness it.

In the Christian life, hope often has to be deferred. The hope of the disciples that Jesus would rescue Israel had to be deferred until after the crucifixion. The hope Abraham had for an heir had to be deferred until after Sarah had passed the point where she could conceive. Joseph’s hope that his family would one day possess the land of Canaan had to be deferred until after his death, when only his bones were left to grace the Promised Land. Our hope cannot be destroyed, even by death, for we serve a God who knows His way out of the grave. Hope may be deferred, but never destroyed


Like Groundhog Day but Without Bill Murray

Friday we headed back up to Children’s Mercy Hospital in Kansas City for a follow-up visit. Thursday, the climate prognosticators were saying that it might snow after 11AM. We left Springfield at 6AM and intermittently drove on skating rinks to Bolivar, after which the road conditions improved. With allowing almost an extra hour of drive time, we made it to the Fetal Health Clinic just five minutes late, glad to have arrived safely.

baby's white and black bassinet

The next two and a half hours were a study in deja-vu. I think both of us were pondering the torture of weekly or bi-weekly trips to Kansas City where an ultrasound would show the same heart defects and the same slow heart rate, which would be followed by the tortured attempt of a cardiologist to sound human while explaining the complexities of human cardiac anatomy to us. All the same, when the ultrasound technician began and located Penny’s heart, I found myself rooting for her with the same intensity I imagine myself feeling were she playing basketball. I wanted to see that heart beating in rhythm, and for a moment it appeared that it was. But it was not.

The cardiologist confirmed that the heart block (the condition where her natural pacemaker is not functioning, causing the upper and lower chambers to have no communication) is still present and poses a high risk. And on top of that, there are the structural abnormalities that will require surgery to correct. I couldn’t watch the screen the entire time. I answered emails and read articles. For a while I watched the little valves in her heart jump erratically and willed them to syncopate, but it became too much. There’s really nothing we can do, except pray and hope and believe. Apart from a miracle, she needs to make it to full term to have any shot at surviving having a pacemaker while on a heart and lung machine to oxygenate her blood, and then she has to survive at least one heart surgery after that. “We’d like you to get to know our palliative team during your next visit” was brought up. Fortunately, that will not be for another four weeks as we can monitor her locally, assuming there are no changes in her condition.

Is it insane to love a child I have never met? I have this recurring daydream where she sits in a bassinet and listens to me try to learn the piano with a sympathetic yet slightly condescending look in her eye. Her future seems so real to us and we want to bring her home.

The hospital is becoming slightly more familiar to me, but there are folks there who are clearly regular visitors. There was the mom walking in her girl of maybe twelve years who was bald and skinny and fatigued from the walk between the elevators and the entrance; the battle between the cancer and the chemo within her had drained her vitality. There were the parents whose children were too weak or malformed or diseased to walk at all and they rode in little carts. This hospital is a war zone where life daily battles death and the love of parents finds hope in the skill of doctors to save a child. Oh, and there’s a coffee shop. Weird. Katie and I are certainly not alone in our suffering.

Why do we love our kids so much? We love our children because we were created by a Father. This is not evolution or instinct or genetics: this is our Nature. And in this messed up world of pain and sorrow the hope we have is that our Father has not abandoned us, but has sent His only begotten Son to rescue us, though that meant His death. “What kind of love is this?” John would wonder. A love that sacrifices a Son to save a rebel. It’s a love that is even more amazing now that I am a father. Humanity is certainly not alone in our suffering: God has suffered in our midst.

So we are back to where we started. We have been told again what we already know. Penny needs your prayers. There’s not much else we can do except wait and trust. We are planning on bringing our little girl home, just like we brought home our other children. But I’ll share something that happened last week, and you can read whatever you like into it. I fell asleep around 10PM on Sunday night and woke up with the strongest feeling of peace in my heart around midnight. I had either dreamed or contemplated in the twilight between sleep and wake two things, and I could not tell whether these two things were consecutive or simultaneous. In one, Penny was born without the severe heart defects that had been diagnosed and we brought her home healthy. In the other, I imagined myself typing the words, “Penny has been healed” on this very blog. But I knew in my mind – in that way you know things in your dreams without knowing how you know- that what I meant by this was that God had welcomed her into His arms and she was safely with Him. In that moment of peaceful clarity, I knew that one way or another, Penny will be going to a home where she will be most welcomed and most loved. And that’s enough for me.


So There, Now You Know As Much As Me

7 days following the initial news of Penny’s heart issues, we left Springfield at 7AM to head to Children’s Mercy Hospital (CMH) in Kansas City. Our first appointment was at 11AM but with a solid schedule ahead of us we wanted to get a bite to eat, which took us to Panera. Being unfamiliar with Kansas City, I relied on navigation to get to CMH from there, which wound us through snow dusted streets and quaint neighborhoods until, like an apparition, the hospital materialized and we were plunging into the bowels of a parking garage.


At the front entry desk, we were not just directed but guided to the 3rd floor Fetal Health Clinic by a volunteer, and throughout the rest of the day we received the same personal care from every person we met. Pictures of healthy children adorned brightly colored corridors while giant spinning sculptures hovered above. The smell of Roasterie Coffee and the rainbow lights across the ceiling of the gift shop provided texture to a sterile environment. Later I would discover a chapel where I could sit and, quite frankly, cry for a while – alone with my God.

At the end of the day, it is a hospital. The human touches were all appreciated and the kindness of strangers memorable. But soon the testing commenced: an almost 2 hour marathon ultrasound that began with Rita and concluded with Matt, a cardiologist. As I watcher her little heart beat, I couldn’t help but marvel that every human being is kept alive by that little organ. It’s no wonder that we speak of the heart of the matter, or the saintliness or wickedness of an individuals heart.

Instead of an improvement in her heart functions, we learned that Penny’s heart abnormality is more complex than atrioventricular canal defect, although that diagnosis still applies. Her heart falls into the paradigm of heterotaxy, a condition wherein certain internal organs don’t demonstrate the “left side” and “ride side” that the human anatomy requires. We were happy to learn later than this condition is not represented in other internal organs, meaning she is developing normally. However, the primary concern is that the upper and lower chambers of her heart are not communicating, which means they are not beating in sync. The lower chamber, which does the heavy lifting of moving blood through the body, is only beating at just below 50 beats per minute, less than half of what is considered normal. Since her heart is the main health concern, this consultation with the cardiologist was particularly brutal.

Following these, Katie was taken in for a standard OB ultrasound and I was released to find food, coffee, and have a good cry in the chapel. They weren’t done poking and prodding Katie, so she did not get that reprieve. After that we spoke to a doctor from maternal fetal medicine, who helped us get a bigger picture of Penny’s health, and then a quick consultation with an anesthesiologist. Our final meeting of the day was with “the team”. Our team. All of this scheduling and all of the consultations were arranged by Bryan, a Fetal Cardiology Nurse Coordinator, who had been our point of contact since being referred to CMH. He was a wonderful asset throughout the day and we particularly appreciated his efforts.

So our hospital day concluded with a meeting with 10 individuals – 7 in person and 3 on screens. There was a social worker, neonatal cardiac specialists, palliative care nurses, a geneticist…you get it. They were all very kind and supportive. The end result of the day are as follows. Penny’s heart rate is dangerously slow and at some point, may not be sufficient to keep her alive in utero. She’ll be monitored frequently for signs that her heart is giving out at which point she will have to be delivered. The closer she gets to full term the better for her. We are at 22 weeks and I think everyone will be pretty happy if we get to 33, although I’m hopeful for 34 or 36. At birth she will need – if not immediately, very quickly – a pacemaker to get her heart beating correctly. She will probably have to stay in the hospital for at least a month after she is born. We have not even begun to look beyond that to the potential surgeries she will need to correct the other abnormalities in her heart.

There are so many potential outcomes at this point that we can’t quite bring the situation into focus. Yesterday was a roller coaster ride of emotions. I woke up in the middle of the night thinking about all the different scenarios in which we could be parted from our daughter. I rose this morning confident that she is strong and she will live a glorious life. What will be our story? We know that only one outcome will come to pass, and that is what God has ordained. His is the hand holding the quill that writes our story…Penny’s story. And it is a hand both mighty to save and gentle enough to wipe the tears from every eye.

How are we doing? We are not crushed. There was laughter yesterday mingled with the tears. Katie and I spent almost six hours in the car together – talking, listening to music, and reflecting. I don’t think we are in denial. We are not hopeless. We told the doctors that we know Penny may die, but we do not live in fear of death. We thank you for your prayers and ask that you would continue praying for Penny. Pray that her heart heals. Pray that she can come to full term. Pray for a miracle. I seem to be having a hard time asking God for anything right now – I just know that I trust Him. So pray in my place, and pray big.

What shall we then say to these things? If God be for us, who can be against us? He that spared not his own Son, but delivered him up for us all, how shall he not with him also freely give us all things? Who shall lay any thing to the charge of God’s elect? It is God that justifieth. Who is he that condemneth? It is Christ that died, yea rather, that is risen again, who is even at the right hand of God, who also maketh intercession for us. Who shall separate us from the love of Christ? shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? As it is written, For thy sake we are killed all the day long; we are accounted as sheep for the slaughter. Nay, in all these things we are more than conquerors through him that loved us. For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.

(Rom 8:31-39)