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.

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.

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

“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. 

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.

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.”

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.

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.