The Hedge

The hedge is beginning to bloom in our backyard. I am sure it has a fancy botanical name, but I just know it as hedge. To me, it is the scent of my hometown, the sweet perfume of a Southern springtime. I can’t get enough of that aroma,  I wish I could bottle it up and keep it all year. 

But hedge doesn’t last very long. After the first hard rain, the tiny pristine white blossoms turn brown and mat together. The scent evaporates and the plant dons basic green leaves until fall. The fragrant blooms are gone even more quickly than they came.

Too often we miss the fragrance of the hedge because we just think it will be there next year, or we are too busy or stressed to pause and enjoy it at all.

Right now the hedge is blooming, and right now my Zoe girl is alive. I want to savor every second that I can of this season, because I know it will be gone in a flash. Sometimes the hours can seem painful and long, but I want to soak up this time I have with my daughter. Five weeks have already passed in a blur since her diagnosis.

The last couple of weeks have been filled with a lot of waiting. The anguish of waiting for a phone call can be just excruciating. For the last two weeks, I woke up with knots in my stomach waiting for my phone to ring. Zoe’s diagnosis is perplexing. It actually makes me feel better that the doctors are a bit puzzled about it all as well. It is just one in a million (actually I think the odds work out to 1/3,000,000) that Zoe has this particular combination of conditions. We are thankful to God that Cody and I are not both genetic carriers of her conditions, as we once thought during the last couple of weeks.

Now that we know more, and in some ways actually understand less, I have some peace. The uncertainty of it all gives me renewed hope. Physicians can’t wrap their minds around all that is happening, they can’t explain it. 

And yet I know the One who DOES know and DOES understand and IS in control. I look to the cross and remember that he is for me and I am constantly reminded in Scripture and by his Spirit that he is with me. For and with. Two tiny words that communicate such truth about the beauty of the Gospel of Jesus. 

In an odd way, I think it really is a special blessing to be staring death in the face with her. Everything else in life has been quickly sorted into proper perspective. Zoe is teaching me to cherish each moment of life, because the next is not promised. And in all reality, none of us are guaranteed tomorrow. All too often, we carry on believing that we, and the ones we love, will live to a ripe old age on this earth. It is just not promised to any of us, no matter how young or old. 

And yet this life is only the beginning. Dietrich Bonhoeffer once preached these words about life on earth, “All that is here is only the prologue before the curtain goes up.” Zoe’s prologue may be short, but the story into which she will live when the curtain rises will have no end.

All flesh is grass,

   and all its beauty is like the flower of the field.

The grass withers, the flower fades

    when the breath of the Lord blows on it;

    surely the people are grass.

The grass withers, the flower fades,

    but the word of our God will stand forever.

(Isaiah 40:6b-8)

Manna for today

Yesterday we got to hear Zoe’s heartbeat. There is no sweeter sound in the world to me. As memory of that strong drumming echoes in my ears, it seems like there must be some giant mistake happening here. Surely her great heartbeat means she’s okay? How can it be that I can hear her heartbeat and feel her move...and she’s going to die?

It’s all so hard to process.

Nothing is normal. It’s hard to find the energy to eat or talk or work. My memory is normally pretty precise, but I cannot recall even simple things. In the weeks since Zoe’s diagnosis, Cody and I have just been taking one day at a time. I don’t even know that there are good days and bad days. It’s more like a good hour or a hard hour. Zoe is all I can handle.

Unfortunately, I do think there is a certain selfish tendency to try to protect ourselves from what is ahead, to limit love because of the looming loss. We pray that God would continue to expand our capacity to truly love her as she deserves to be loved. To love her with abandon, as a perfect gift from God. To love her fully, despite the deeper pain we may feel when she leaves us.

When I begin thinking about the days ahead, the weeks and months ahead, I get overwhelmed. My Nanny called that “borrowing worry.” Ultimately, the future is frightening because I am often imagining a future without the grace of God.

When the Israelites were wandering in the wilderness, they received manna from heaven each morning (Exodus 16). They couldn’t save it up for the future. If they tried to hoard some away, it became rancid. The same is true with the grace of God. His mercy and peace is sufficient for the day, not for some imagined future time.

So in the present, I want to focus on being a good momma to Zoe. We want to cherish the time that we do have with her. She is alive right now, and we want to celebrate her! I can truly say that I am grateful God chose me and Cody to be her parents. I don’t want another baby. I wouldn’t trade her for a healthy child. I love my Zoe Karis just as she is. I am grateful to God to have the joy of giving her life right now, grateful for the privilege to carry her in my womb. Zoe is an eternal soul, worthy of whatever life and dignity we can provide to her.

That doesn't mean we aren't trembling. The prophet Habakkuk got a glimpse into his future and was terrified by it. He wrote, “My body trembles; my lips quiver at the sound; rottenness enters into my bones; my legs tremble beneath me.” And by the grace of God he was able to say, “Yet I will quietly wait for the day of trouble.” (Habakkuk 3:16) Now of course he was waiting for destruction to fall on his enemies and we await something much different. Nevertheless, what is ahead is daunting. We choose to wait on God’s peace and provision for each moment in spite of the fear.

One such rhythm of peace each evening is reading the Jesus Storybook Bible together. We’ve been all through the Old Testament, and tonight we will finally get to Jesus. Last night Cody excitedly said, “It’s almost time to introduce you to Jesus, Zoe!”

What a blessing and joy it is to read these stories to Zoe Karis, certain that she really is going to know Jesus. She will be with him. And one day, we will be too. His dwelling place will be with man. He will be our God and we shall be his people.

And he will wipe away all the tears from all the faces.

Thanatos to Zoe 3.25.16

That first night was especially hard. Each time I woke up, I had to remember all over again that it was real, that my baby was “not compatible with life.” I wanted so badly to escape to a sweet dream, but the nightmare of reality kept me awake. At 5:30am when Cody woke up, I was so thankful to not be alone anymore.

We met with the specialist, Dr. G, at 7am for a consultation and amniocentesis. He asked us if we had any questions. We shook our heads no, still in disbelief. Cody asked if he had any ideas of diagnosis. The doctor rattled off a long word I couldn’t understand. I didn’t ask for clarification though, partly from shock and party because I saw the tech in the corner write it down on a post-it note.

Cody asked if it might be anything else. The doctor plainly said no.

He explained that this rare condition happens at conception in the very first cell, and imprints on each one thereafter. This causes bones not to develop properly throughout the body, not just the limbs. This condition is fatal ultimately because the tiny ribcage does not allow lungs to develop or breathing to be successful upon birth. I’m not sure I was breathing either as the specialist described this.

We left the office in a daze. On the drive home, I remembered the post-it note the tech had given me with our daughter’s diagnosis on it. I pulled it out of my purse and stared at it in disbelief. Written on that brightly colored square of paper were the words thanatophoric dysplasia. I felt an iron clamp come around my lungs as I gasped to Cody, “thanatos!”

One gift of a seminary education from Beeson is learning Biblical languages. I immediately recognized thanatos as the Greek word meaning death. Our daughter’s diagnosis included the word death. Even though we had been told she would die, seeing that word in a language I knew was more than I could bear.

Cody dropped me off at home and left for work. I sat alone under the weight of thanatos until my parents arrived. I cried. I prayed. I listened to Shane & Shane sing me the Psalms. I sat and stared out the window and wondered how the world was still going on as mine seemed to be standing still.

Sometime during that day, the Holy Spirit began stirring my soul. Though death--thanatos-- may be her diagnosis, though it may be what awaits her in this broken, sin-riddled world...it is life and wholeness that awaits her in Jesus. Thanatos may be her diagnosis, but her destiny in Christ is LIFE.

In light of this truth, we have named her Zoe Karis.  Zoe is Greek for life and Karis is Greek for grace. She truly is a gift from the Lord. A gift of life by grace. Every time we say her name, it is an act of hope. It is an act of victory over death. It is a proclaimation that Jesus conquered the grave for her, and for us.

That Friday, Good Friday, had a renewed meaning. It is not just that Jesus came to die on the cross to atone for my sins, but that he came to restore everything which sin has broken...even genetic abnormalities.

Oh friends, I hope you know that peace. The kind of peace that can say through the tears, “I do NOT understand why this is happening, but still I trust you, Father.” The pain is still very very real, but I am certain that Cody and I have experienced Christ's peace because many of you are praying for us. Please continue to pray for peace...that we might trust the WHO even when we don’t understand the WHY.

The beginning 3.24.16

I don't know where to start Zoe's story, so I suppose the beginning is best. 

My husband Cody and I have been married almost 7 years. We moved to Birmingham in 2011 for graduate school at Samford. I currently serve in student ministry and work with an initiative to strengthen Biblical preaching. Cody is completing a residency in hospital administration. We stay busy :) 

Just before Christmas, Cody and I were surprised and excited to find out that I was pregnant. We had lost our first baby in the fall, and in many ways were still so heartbroken over the loss. We were grateful to God for this new life because we knew it was from HIM. (If you’ve experienced miscarriage, love someone who has, or just want to know how to minister to others well, I highly recommend Jessalyn Hutto’s book, An Inheritance of Tears. It is gospel-centered salve for the heart.)

Because of our miscarriage, I remember saying of the new pregnancy, "I know every day is a gift and not a guarantee!" I didn't know just how true that would be.

Early pregnancy went well; each time I was sick, I praised God because I thought that was a sign everything was okay. I was never so glad to feel miserable! We waited until I was 14 weeks to announce to the world that we were expecting, because we wanted to be sure all was well.

All of our family lives in Arkansas (woo pig!) and every schedule happened to work out for both sides of our families to come in for Easter weekend this year. We were so excited! I asked my wonderful doctor if I could have my 20 week ultrasound appointment a week early so that we might be able to have a gender reveal party with our family over the weekend. She kindly agreed, and I went to Pinterest for party plans!

The day of our ultrasound, Maundy Thursday, Cody and I were so excited that we could hardly stand it. As we sat in the waiting room, Cody prayed a sweet prayer and finished with the words, "Prepare us for whatever we may hear today." The Spirit was so kind in getting us ready for a storm we never saw coming.

With anxious joy, we walked into the ultrasound room. The sweet tech waved her wand over my belly and our sweet baby came onto the screen. The drumming of the heartbeat sounded strong and to us, everything looked just perfect. We watched in awe as our baby danced on the screen, while the tech took many different measurements. It is absolutely amazing to me that through the gift of technology, we can have a tiny window into the secret place, to see the life God is knitting together (Psalm 139:13-16). We were given a strip of photos from our time and happily floated out of the room to visit with the doctor.

I think my blood pressure was 101/63 or something while we waited for Dr. B; I could not have been more relaxed. She walked in the room and made some small talk which I don't really recall. Then she said something that I think I will hear for the rest of my life:

"I have some concerns."

In that moment, I could not have been more confused if someone had told me that I sprouted a lion's mane. She went on to say something about the bones measuring short and that she didn't know what it meant and she had already called a specialist and they were waiting on us downstairs right now. 

She ushered us out the back of the office (always a bad sign) and kindly rode the elevator down with us to the Maternal Fetal Medicine doctor's office. I kept repeating to Cody, "What is happening?" When we walked in the MFM office, the receptionist said "You must be Hayden." I felt a horrible sinking in my stomach at that moment and tears began welling up in my eyes. There was just something about her already knowing my name that communicated the gravity of the present situation.

Even in that moment, God was near. As I watched my sweet baby on another ultrasound screen, I prayed that the God who can make dry bones live (Ezekiel 37) would make short bones grow. 

It was a provision of God that the specialist would see us so quickly and consult with us while he was out of town. We met with him over the phone after he reviewed the images. He was very kind and asked what we knew. I said "We know that the bones are measuring short." He replied, "Ohh...there are many things wrong with your baby."

As he continued talking, I could only process bits of information...brain defect, heart defect, spine defect, not compatible with life. I felt dizzy and tears began streaming down my face. All I could say was Jesus. No other words, no other prayer, no other questions...just Jesus. 

We were left alone in the room for some time and I sobbed. Wailed may even be a better word. Our sweet tech came back in shared some encouragement with us about the nearness and goodness of God. It was a holy moment. We asked if she knew the gender of our baby...the thrill of surprise was too far gone. She told us we had been given a little girl. Cody somehow held his composure and scheduled a procedure for the next morning which we hoped would provide some answers.

We walked out of the office in a daze. I don't even remember getting to my car. It honestly felt like I was in a dream- a terrible dream that wouldn't end and I couldn't wake up. Cody and I walked in our house and collapsed on the couch in a heap of tears. After a little bit, we called my parents who were on their way to Birmingham for the weekend. We didn't want them to feel any pressure to come in light of the circumstances. They didn't hesitate. Cody's parents, who planned to leave the next morning, responded the same. God was so good to already have our parents coming during the time we would need them most.

I don't remember much of the rest of the night. I know that Cody read Matthew 26:36-46, a passage recording Jesus' time praying in Gethsemane. So much of that text resonated with our hearts. We felt such deep sorrow (v. 38) and prayed that this cup might pass us, but ultimately for God's will to be done (v. 39, 42). This year, we sat under the weight of Maundy Thursday in a new way. 

Simultaneously, the peace of God was so evident. I texted my brother and sister-in-law that night, “Broken hearts but we know that God is still good and this doesn’t take him by surprise. God even knows the deep pain of watching his own son die. Thankful we have a God who feels our deepest pain.” 

Praise God. Because Jesus lived, our God knows our pain. Because Jesus died, her death will be not be the final word. Because Jesus rose, she will rise. 

Soli deo Gloria.