Amazing Grace

Abby and Josiah play a computer game together.

So, it is important that I begin this post with some preliminary information about my children. Abby is a typical firstborn.  She is compliant, organized, takes instructions well, and she likes to please.  Josiah is not a firstborn.  He is strong-willed (ahem, can’t imagine where he got that from), has quite a temper (a trait I try to hide), and pleasing people is not his top priority. He is wonderful and I would not change him–well, not much, anyway–but he can be difficult for us to manage at times, and we are still learning how to discipline him.

Two days ago, I was allowing Josiah to watch “destruction site videos” on youtube (that’s construction site, but he says destruction, and it’s just so cute I only correct him half the time).  He had watched four or five very short videos–maybe 20 minutes worth.  He just watches these big machines move dirt or get bogged down in wetlands or do stunts or sometimes tip over.  It’s very difficult for me to understand why this fascinates him so much, but I’ve been told it has something to do with testosterone.

When I told him computer time was over, he was very unhappy.  Very unhappy.  His response was not, “Okay, Mom.  Thank you so much for letting me watch youtube for 20 minutes when I had already watched a video on TV.  That was very generous of you.”  His response was more like, “NO! NO! I’m NOT going to!  I’m NOT going to turn it off!  NO!”  Of course, this had to be addressed.  I told him to go to his room.  He obeyed, but my almost four-year-old slammed the door and I heard him throwing something.  I went into his room and he yelled at me to go away.  Lovely, right?  (Okay, you moms who only have your little obedient firstborn.  I remember when I was you, thinking I had it all figured out!)

I sat down criss-cross applesauce in his room and didn’t say anything.  I was very calm–doesn’t always happen that way, but it did that day.  I said, “Josiah, you’re angry.  It’s okay to be angry, but you can’t yell at Mommy like that.”  He further fell apart, threw himself across his bed, and he kept saying that he was not angry at me, he was angry at the “depooter.” (That’s computer–see, isn’t his way so much more fun?)  Well, this was a flagrant lie.  He was indeed mad at me, not the laptop.

I told him that I would forgive him for yelling at me, but he needed to be a big boy and admit that he was angry and apologize for yelling at me.  He kept saying he wasn’t angry at me.  “In real life!” he said, which I think meant “Really, I wasn’t angry at you.”  “In REAL LIFE, Mama, I was angry at the depooter!”

And then it dawned on me.  Well, I should say, the Holy Spirit revealed to me that I had been guilty of doing the same thing.  I told Josiah that I had been angry at God and yelled at Him.  I told Josiah that I was angry at God because Anna was sick, and I had yelled at Him.  I told him about going into my van and yelling at God.  I told him that I had to admit that I was angry at God, and then I had to ask God to forgive me for yelling at Him.  I told Him that God had forgiven me.

“Were you a little girl?” Josiah asked.

“No, I was a grown-up.  I was angry and I yelled at Him.  But I admitted it and He forgave me,” I said.

Josiah quieted.  “Oh,” he said.  I think he was pretty surprised that his mother would do something like that.  Or maybe he was just surprised that I admitted it.  “Mama, I’m sorry. I was mad at you a million,” he said, which means that he was very, very mad. “I’m sorry I yelled at you.”

“Thank you, Josiah.  It’s okay. I forgive you,” I said.

“Will you hold me and read me a book?” he asked.

“Of course,” I said.

And, you know, I think it’s just about that simple with our God, too.  I was angry (which I think He was okay with), I yelled at Him (probably not okay), He forgave me (which cost Him his own son), and then He held me while I cried.

It’s amazing how God uses the love we have for our children to remind us just how deep His love is for us.  Grace is amazing.


The Blanket

One day in January, I received a package in the mail that came all the way from Alaska, where Joey’s younger brother Jonathan and Jonathan’s wife, Lacey, live.  A letter from my very domestic (and incredibly thoughtful) sister-in-law explained the contents.  Lacey had begun crocheting a blanket for our baby before we found out about Anna’s sickness.  After coming “home for the holidays,” Lacey decided to finish the blanket upon her return to Alaska.  After she completed it, she mailed it to us.

The blanket is mint green, yellow, and white.  It is very soft and the yarn has a pretty sheen to it.  My favorite part of this precious gift is the scalloped edges.  When Joey told Lacey that I especially loved the edging, Lacey said one reason she fashioned the edges like that is she struggled to keep the blanket straight. Those dainty scallops help mask that the whole piece may be slightly askew. (I studied it and couldn’t see that it was, though. Lacey is pretty talented.)

Wednesday was a rough day, and for some reason, that soft, warm blanket came to mind at the end of it.  We had an ultrasound scheduled for 8:30 that morning.  I woke up praying. Please, God, give us a miracle.  Let this be the day that Anna is made well.  Please remove those cysts–at least on one kidney.  She could live with just one kidney, Father.  Lord, please give her amniotic fluid.  Just enough for her lungs to develop.  I don’t have to be comfortable, Lord.  Just give Anna enough amniotic fluid to live.

I got Abby ready for school and headed to Pensacola.  On the way, I talked on the phone to my mother, who had kept Josiah overnight.  Talk, talk, talk.  Try not to think.  Talk, talk, talk.  Don’t get too worked up.

Joey and I talked in the waiting room.  We made plans for spring break and talked through how much vacation time he had and where we would like to go and what we would like to do.  Diversions.

Then the nurse called me back. She checked my blood pressure. She gave me my blood test results, telling me I was not a gestational diabetic and that my iron levels looked good. She weighed me (oh, my). Then she followed me back to the waiting room to call her next patient.

Next, Joey and I made our way to room 6, where the ultrasound machine is located.  Our doctor came in and after a brief conversation began the ultrasound.  Anna appeared on the screen.  Her heart was beating 158 bpm. The picture was fuzzy because there’s just not enough amniotic fluid on which the waves of the ultrasound can bounce.  But we could see her profile, her ribs, and yes, her kidneys.  The black spots were still there. She weighs almost 3 pounds now and will probably weigh between 4 and 5 if we go full term. 

Anna remains breech.  She has not shifted since the January ultrasound.  Dr. A said she will probably not turn because of the lack of amniotic fluid.  I asked him how much fluid I had–10% of what a normal pregnant woman has?  He said less than 1%.  That’s why every time Anna shifts, I feel her.  That’s why when Abby or Josiah hug my stomach tightly, I wince.  That’s why we don’t get good pictures of her.  And that’s why her lungs won’t develop and she won’t be able to breathe on her own.  I took my amniotic fluid for granted in my healthy pregnancies.

My first two deliveries were relatively easy.  I gave birth to Abby and Josiah naturally. Abby was born just over 2 hours after we made it the hospital. We went to the hospital sooner when I was in labor with Josiah, and he came about 8 hours after arrival.  I have never been induced or had pitocin.  I have “childbearing hips,” as some people say (thanks, Mama).  My labors and deliveries have been smooth and as comfortable as possible (after the epidural, of course–yeah, I’m not that tough).

Honestly, the thought of a c-section weirds me out a bit.  But now, due to Anna’s positioning, I am facing the probability of having one.  I know it is almost routine now for OB physicians and that many women have had successful c-sections. It will be okay, but it just seems like one more thing.  One more detail to turn over and over in my mind.  It will take longer to heal, and I will still be in physical pain during the emotional torment of burying our daughter.  It seems like this is something God could easily change.  Why hasn’t He?  What could be His purpose in this?

After the ultrasound, Joey walked me out to our van, and he prayed.  I couldn’t close my eyes; I couldn’t bow my head.  I tried but it seemed dishonest.  I felt the anger welling up inside of me.  Joey was praying this sweet prayer and I was wondering why God wouldn’t intervene.  I know there have been hundreds of people who have visited this blog.  I know so many have been bombarding Him with prayers.  Why isn’t He changing things?  At the very least, why didn’t He turn Anna so that we could have a natural birth?

I know this is is not the right way to handle bad news.  I know I should be asking for God’s will to be done. I am not a skilled sufferer.  I am in many ways a beginner, a novice at best.  I had a great childhood, married a wonderful man, gave birth to two healthy children, and I have not ever had to go through anything like this.  I know that God is shaping me and creating a new work in me through this terrible, horrible process.  But, honestly, if I had a choice in the matter, I would say, “Thank you, God, for this opportunity, but you can stop now.  I would like to quit.”

My faith is imperfect.  I am weak.  I get angry.  There are moments when things are just blurry and scary.  That’s not where I hunker down and camp out, but that’s definitely part of the path we are traveling.  I don’t want to sugar-coat this journey. We are losing a child, and it stinks.  It is rotten and pungent.

If Anna’s medical prognosis becomes reality, I will never quite grasp the why of our story.  I will have the joyful memories of carrying Anna, feeling her kicks and twists, listening to my husband and children talk to her, dreaming about the day that my faith will be sight.  I will have held her in my arms before this is all over.  There will be parts of this experience that will make wonderful, extraordinary memories.  But the story will remain fragile for me. I may know that God is in it, but it will never feel right to me that she’s gone.  I will always wonder about the little girl we might have raised.  I will, simply put, always ache for Anna.

But even when I’m not willing to say “Thy will be done,” faith remains.  Sometimes I settle into my anger for a moment and let bitterness serve as a counterfeit substitute, soothing me self-righteously.  But when I make the choice to turn to Him, I feel something change inside.  The spark flickers, then flames, and it curls itself around me like a warm blanket, comforting me with a peace that passes all understanding.  I have to choose it, and I have to lean into it. Sometimes I have to ask the Holy Spirit to remind me it’s there. Lord, you know I believe.  But I don’t feel you now.  I am so tired and I feel the bitterness taking root.

Then He reminds me in His Word, My grace is sufficient for you, for power is perfected in weakness (2 Corinthians 12:9a) He’s not talking about my power.  He’s talking about His.  I don’t have to be a tower of strength.  He will stand for me.  I can admit that my thoughts and emotions are not always in line with my theology, my own beliefs–with Truth.  But I am not alone.  The apostle Paul wrote, “Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me . . . for when I am weak, then I am strong” (2 Corinthians 9b-10).

In the middle of the night, tears coming easily and emotions raging, I hold this blanket Lacey made for Anna.  I think about how God lovingly shapes us.  He accepts my sad little mustard seed of faith I offer Him and uses it to blanket me with comfort and peace.  He softens my rough, gnarled edges, replacing them with lovely little scallops, sacred mountains and valleys.  He fashions these graceful but strong edges and ties them off with the grasp of one who will not allow one of His sheep to be snatched from His hand (see John 10:27-29).  His strength envelops my simple faith in such a way that I don’t come completely unraveled–a disheveled pile of yarn.

Then I wrap myself up in it and will myself to sleep.  My children need their mother.  My husband needs his wife.  And I need to rest tonight in God’s strength, so that I can get through another new day.

Sacred Kicks

Celebrating Anna has been one of the greatest joys of my life.  That may sound strange.  It would have been a foreign thought to me just a month ago.  But our knowing that without a miracle she will not be with us much longer has made me treasure every part of carrying her. The aches don’t seem so bad, the stretch marks seem unimportant, and the hormonal imbalances just fit right into this emotional rollercoaster I’m on anyway.

our little Anna at 19 weeks

One difference between this pregnancy and my others is the movement. With very little amniotic fluid to cushion, I can feel her twists, turns, and bumps more intensely. And every kick is sacred.  Every time I feel Anna move inside me, I pause. Sometimes my breath catches in my throat.  I stop what I’m doing and enjoy it.  I talk to her.  I treasure the moment.  She flips and so does my heart.  She’s alive.  She is not just a dream.  She is not defined by her disease.  She is my little kicker.  My sweetheart.  My Anna.

And while I have always been so grateful for my Abby and Josiah, this experience has increased my thankfulness for them exponentially. Every single life is a miracle.  For any baby to come into this world healthy is a miracle.  And you know what else?  For any baby to come into this world  unhealthy is also a miracle.  God uses every child in His own perfect way.  I don’t have to understand it all or even like it all, but I do need to acknowledge, for my own spiritual health if nothing else, that His plan is always good and right.

Having said that, it is still unspeakably painful to prepare to give up your child.  Even though I know she will go to meet my Savior, and even though I know there must be a plan in all this, I still don’t want to do it.  I don’t want that plan.  I’m still asking for a miracle.  I still want my girl.  I am a mother, and that is how I feel.  Even God had to turn away when His son was dying on the cross.

I have many times wondered if it would be easier to be ignorant.  Would it be easier to go through this pregnancy not knowing the prognosis?  The answer I have come to is simply that I don’t know.  My Aunt Sylvia lost her son, Samuel, over 40 years ago.  She went into the hospital after having a healthy pregnancy, and she left the hospital with her arms empty.  She wrote me the sweetest letter telling me about her experience and giving me tender advice.  Reading her letter, I could tell that losing her Sammy was just as real and just as agonizing to her as it was 42 years ago.

Through this blog, I met a very special mother named Melissa.  Melissa’s baby, another sweet boy named Josiah, went to be with Jesus just hours after his birth. But Melissa knew before the delivery that Josiah was not expected to live.   Because of her experience as a labor and delivery nurse, she had seen traumatic, unexpected loss of newborns.  Conversely, she also had seen parents who were prepared.  Although her family prayed for a miracle, they also prepared for losing Josiah.  They prayed with their children and guided them through the process, created a very specific birth plan to be used during the delivery, secured a professional photographer to capture those few precious moments they hoped to have, and made decisions about their child’s funeral and burial.

The truth is that losing a child is perhaps the most wrenching experience of a mother’s life–either way.  And while I have tried to face that, I have not yet had to walk through it.  I’m still praying that I don’t have to go through it.  But I am not going to ignore what the doctors say; I do not believe my God asks me to do that.  I do not place my faith in the doctors, but I will use the information they have given me to prepare.  If God chooses to heal Anna, then what will it have mattered if I prepared for her death?  In preparing, I have talked to my children about heaven, explaining to them that this is not really our home.  I have treasured each moment Anna is in my womb, not knowing when she might be taken.  I have tried to know Him more through this journey, struggled to trust when things seem so shaky.  What is faithless about any of these actions? They have required my faith to grow, not shrink.

Though good has come from the preparing, I am having a difficult time completing the task. I am so torn regarding Anna’s earthly resting place. People have told me that we can move her later if Joey and I decide to be buried in a different place, but who wants to do that?  Who wants to go through the burial of your child twice? 

Do we bury her near our home, so I can visit the gravesite more often?  Do we bury her in Flomaton, where Joey is from and where Joey’s family has several plots reserved already?  Do we bury her in Berrydale, where I was raised and where I have family buried?

Am I seriously having to decide where to bury my baby girl?

Do we have a private graveside funeral with just immediate family?  Do we open it up to extended family and close friends?  Do we open it up to everyone who loves us and loves our Anna?  Do we have the funeral inside a church because I hate the graveside part?  How do we do this?  It feels like we are too young to be making these decisions.  But then again, no one wants to make these decisions at any age.  It is all so surreal at times.

When I get bogged down in these questions, I sometimes feel the Enemy talking to me.  Where is your God? he asks.  Where is He now?  Why doesn’t He just intervene?  Haven’t you been faithful?  How is He good now?

It is in those moments–these moments–that faith becomes a decision.  It’s not something I inherited.  It’s not something natural for me.  I consciously choose Him.  I will still feel angry. And I will still ache. But I cannot live without the hope of knowing that this is not the end and that I will see my Anna again.  If I cannot cling to this, I will be a bitter, angry woman, a defeated mother, and a hopeless soul whom my enemy has devoured.

There is a response I often have for the enemy, and it’s something I repeat for my own sake, too.  Aloud I say: You will not devour me. You will not use me to devour my children. I choose Jesus.  I choose to follow Jesus.

And I just got another sacred kick from my Anna.  I think she’s saying, “Go, Mama.  You tell him.”  I love that baby girl of mine.

Bible study spot

This is a snapshot of the end table next to "my spot" on the loveseat, where I study God's word, pray, and journal. The framed picture is the ultrasound of Anna's profile.

Happy Valentine’s Day, Sweetheart

Today is a good day. 

I just want to write a very short post to say how thankful I am for all the love I am celebrating on this Valentine’s Day. Mostly, I just want to praise God for my remarkable husband.  Without his encouragement, I would have never started writing this blog, which has been so therapeutic and helpful to me.  I feel humbled that God is using this and my baby girl in ways I never could have imagined.

God gave me a beautiful man.  His heart could not be purer.  My happiness and the happiness of our family means more to him than his own.  He has done everything in his power to ease this pain for me, even though he, too, is hurting.  Joey, I love you.  I wish we didn’t have to go through this, but I am so thankful that you are here with me with each crazy emotion and irrational tear.  You have never judged me or told me that I am not dealing with this correctly.  You have never pushed me away or asked me to push these feelings down.  You have been so gracious to me even when I deserved no grace.  I am so unworthy of you.  I thank my God upon every remembrance of you.

We have all been blessed with loved ones.  Let’s celebrate them today.  And let’s thank God for each one. 

Love is patient; love is kind and is not jealous. Love does not brag and is not arrogant; it does not act unbecomingly. Love does not seek its own, is not provoked, does not take into account a wrong suffered, does not rejoice in unrighteousness, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things. Love never fails . . . now faith, hope, love, abide these three; but the greatest of these is love.  (I Corinthians 13: 1-8, 13) 

A Sister for Abby and Josiah

Hiding the truth about Anna’s condition from our children was painfully difficult. But we knew that telling them would also be painfully difficult. Joey and I had jointly decided to wait until after the Disney trip. Then after Christmas.  And then after the December 28th ultrasound.

I called a friend, a professional counselor, to talk me through the best way to share this sad news with Abby and Josiah.  I was particularly concerned about Abby.  We had gone through a miscarriage just 9 months earlier, and Abby had mourned the loss of that child. She had prayed fervently for another baby–specifically, for a sister–and I was concerned about how this would impact the way she viewed prayer and God. I also wanted to make sure that we processed the grief in a healthy way.

Abby had already sensed that something was wrong.  The day we had the initial ultrasound that revealed Anna’s health problems, my mother picked Abby up from school so that Joey and I could see the high-risk doctor. Abby knew that I was having the ultrasound that day and that I would be telling her if the baby was a boy or girl.  When DeeDee (my mother) showed up at her school instead, Abby asked, “Did the baby die in Mommy’s tummy like the other one did?” My crafty mother was able to change the subject.  But you can only do that for so long with a pretty astute kindergartener. We had dodged subjects and hidden tears for a month.  She knew something wasn’t right.

On the morning of December 30th, the kids were having a great time playing outside. I remember agonizing as I watched them, knowing we were about to share something so potentially devastating.  It made me think about my own parents and Joey’s parents.  They love us like we love our children, and I know that any of them would have done anything to have taken away our pain or to have somehow bore it all for us.  I felt the same way watching Abby and Josiah.  Why did this hurt have to be a part of their lives, too?

During a short break from play, when the kids had come inside, Joey and I told them that we needed to talk to them. 

Abby sat between me and Joey on the loveseat, and Josiah walked around the room, playing with new Christmas toys. Joey and I told them that we had gone to the doctor and that when the doctor saw the baby on the ultrasound, he could tell that it was very sick. Abby looked alarmed. She looked at me and  then Joey.  Her face changed shape. My heart ached for her.

I had to continue. I told Abby we were very sad.  I told her, “The doctor thinks that after he takes the baby out of my tummy, it will go to live with Jesus.”

Abby tucked her chin and covered her face. Tears came.. All three of us cried together. Joey told her how sad he was and that it was okay to cry about it.

Abby asked why. Mmm. It’s so hard to answer that.  We simply told her we didn’t know why. We said we were going to ask God to heal our baby, but we had to trust Him to do what is best for our child.

“Do you know if it is a boy or a girl?” she asked, looking up at me.

I glanced at Joey and summoned a small smile. “It’s a girl,” I said. “You have a sister.”

Abby’s response was immediate.  Even through my teary eyes, I could see her lips turn up–that sheepish sort of expression Abby sometimes has when she wants to smile but wonders if it’s appropriate.  “So I will have a sister in heaven?  I can play with her there?”

Oh, sweet gentle breeze from the Father’s throne.

“Yes, Abby. Yes, you can play forever with her there.”

Abby wanted to know if she could live in the same mansion with her sister in heaven.  I told her yes–God, please forgive me if my theology was off.  Josiah was not saying much. Finally, he walked over and said “It’s a girl? Agh.  I wanted a brother!” Then he turned back to his toys. Well, at least he was honest.

A minute or so later, Josiah walked back to me.  Joey had left the room momentarily–maybe for more tissues.  Josiah said something about how he would play with his sister when the baby grew up, when she wasn’t sick anymore. I realized that he thought the baby was sick, but that she would get well and would “grow out of it.”

I said, “Josiah, you know how some people get really sick and then we have a funeral?”

Josiah looked at me and his eyebrows dipped in toward his nose.

“That’s what the doctors think is going to happen to our baby. They think that after we get the baby out of my tummy, the baby will go to be with Jesus in heaven and we will have a funeral,” I said.

Josiah looked confused. “But then we won’t have three children,” he said, his mouth twisting. His eyes filled up; his bottom lip quivered.

I held Josiah in my arms and just said, “I know.” It’s all I could say.  After just a few seconds of being held, he was ready to get down–but he was still affected. I asked him how that made him feel.  “Are you mad?” I asked.  His face looked angry.

“It doesn’t make me mad,” he said. “It just makes me really sad.”

Abby told Joey’s family that evening that we were having a girl and that her name was Anna.  We told my family the next evening. That night, I couldn’t sleep well and finally got out of bed at 4:00. It was the first morning of a new year, a year that I knew held things I could not yet imagine.  I prayed, cried, read, and asked questions. I wrote the following in my journal that night:

Anna, I couldn’t sleep for a long time because I couldn’t feel you move and I was worried that you were gone. When I finally came into the living room, I felt you squirming and I couldn’t help but let a big smile come across my face. You bring me happiness, Anna. Being pregnant with you is wonderful. I will savor every moment I have with you safe inside me. I may never get to show you this world, but I will do all I can to love and honor you. You are my daughter and you will forever change me in life or death.

Lord, I still ask for a miracle of complete healing for my Anna. I am trying to trust You with her, Lord. I love her so much. Help me to feel Your presence so I can let her go to you, knowing You are there to love her even more than we can.

Abby loves to give Anna hugs. She often says, "Hey, Anna. This is your sister, Abby. I love you."

Gentle Breezes

Christmas was wonderful. We tried to soak up all the smiles we could.  I felt like I had been living in a nightmare, and although it was far from over, somehow the holidays felt like a reprieve.

This picture was taken at Joey's parents on Christmas Eve. Our kids weren't excited a bit, were they?

Then we had to face the December 28th appointment–the regular OB visit during which there would be another ultrasound for Anna.  I thought I was prepared.  Joey and I knew, practically speaking, what would most likely happen at this appointment.  But when Dr. A said there was still very little amniotic fluid and that both kidneys looked the same–diseased, enlarged–I once again lost it.  It felt like we had just received the diagnosis for the first time. I walked out of the office crying and I wept in my van. I think Joey and I were both hoping for a miracle when we walked in, and we were dealing with disappointment–bitter disappointment–when we walked out.

 I wrote the following in my prayer journal the next day:

I am so tired. Another ultrasound confirmed our baby is so sick. Lord, I do not think You are going to heal our baby. I know you are able to, but I don’t sense that You will. You know this breaks my heart. And it makes me angry and sad. I don’t know why I have to carry this burden. I have to feel her move and kick and squirm, yet I know she will be still in my arms. And as I pray and cry, Lord, I also am burdened knowing I must tell my Abby and Josiah about their sister. As confused and sad and angry and grieved as I am, I know I need your wisdom and discernment in telling them. Please help me to do this right.

The next day, my brother Chad called.  I could tell that he was very upset with himself about something.  He explained that his wife, Jessica, had poured herself out to me in a letter and had picked up a book for me weeks before, and he had just realized that he had never given me either one.  He wanted to know if he and Jessica could deliver it that evening.

Chad and Jessica came with their two children, and our kids all played beautifully, as usual.  Loudly, but beautifully. Jessica gave me a very thoughtful note and a book titled I Will Carry You by Angie Smith. She graciously told me that I could read the book, throw it against a wall, or even burn it. She explained that she had read it several months back and wondered why she kept making herself read something so difficult.  But she had felt compelled to do so.  Now, she knew why. 

I had heard of Angie Smith’s book and had already intended to find it. Another friend had sent me a link to a blog written by this author as well as a link to a song Angie Smith cowrote. Smith’s husband, Todd, sings with the Christian group Selah, and the group recorded their very personal song, “I Will Carry You.” It was the soundtrack to my tears for weeks, and even now, I cannot listen to it without weeping. There were times that I climbed up on our bar in our kitchen and held the laptop to my belly so that Anna could hear it–and I just cried. Here is a link to a youtube video featuring the song: The photos you see on this video are of the author’s family and of their baby girl, whom they lost a few hours after she was born.

God used this book mightily in our family. The author found out at her 18-week-ultrasound that her daughter’s kidneys had multiple cysts and that she was “incompatible with life.” She had three older children, one named Abby.  Her family had even gone to Disney World after their baby girl’s diagnosis. And most importantly, she had many of the same emotions I had felt.  She was a woman of faith, but she was raw and she was honest.  She struggled.  And although she did not receive a miracle of healing for her daughter, I began to see that God had worked a miracle in her life nonetheless.

As a result of this book, the scripture it led me to, and the prayers of so many, I felt my perspective shifting. I wanted to enjoy the pregnancy.  I wanted others to recognize that I had a child leaping within me.  I did not want this baby to pass quickly.  I wanted to feel her move.  I wanted to celebrate her life.  I wanted our children to know they had a sister.  I wanted Joey to talk to my belly and assure Anna that we loved her just as much as we would have loved a healthy child.  I wanted pictures of me pregnant.  I wanted to praise God for Anna.  It was a radical shift. 

Honestly, had Chad given me this book when Jessica had bought it for me, I would not have been ready for it.  It was God’s timing.

You know the story in the Bible in which Elijah is in a cave at Mt. Horeb, waiting for God to reveal himself?  A strong wind roars through the mountains, causing rocks to tumble down.  But God was not in the treacherous winds. Then an earthquake rumbles the earth, but God was not in the earthquake. Next a fire blazes before Elijah, burning his eyes.  But God was not in the fire. Then, just the gentlest of breezes blows by the cave entrance.  And that’s where God was.  From the gentle breeze, He spoke to Elijah (1 Kings 19:11-15).

Several times throughout this journey, I have thought about that Bible story.  I want healing.  I want a big miracle that will shock our doctors and bring glory to God, although honestly I want it most just because I am a mom who desperately wants to raise my daughter. I look for God in big things.  Where was He when Anna’s kidneys were forming? Where was He in those ultrasound rooms?  Where was He when I waited, waited, waited for the results from Josiah’s test?  Where was He in those tornadic winds, earthquakes, and fires?

Well, of course, He was there in those moments. But I felt Him speaking most in the gentle breezes–the kind, encouraging actions of friends and family, the writings of a mother who had carried her child and had to let her go, and in the music. I always hear Him in the music.

I will carry you while your heart beats here.

Long beyond the empty cradle, through the coming years.

I will carry you all my life.

And I will praise the One who’s chosen me

          to carry you. (“I Will Carry You” by Selah)

Anna, I want you to know that your mama questioned God and even wrestled with Him for you.  Then I realized He was not against me.  He was sad, too.  And somehow He used His people to show me just what a beautiful, precious, perfect gift you are to me.  A gift He picked out just for our family.  And for however long I get to carry you, I will do it with joy. If I don’t get to tell you all that here, then one day in heaven, I will hold your face in my hands and tell you how much I missed you. And I will never, ever have to say goodbye again.

sitting cross legged holding anna blocks

My sister-in-law, Lacey, took pictures of our family while she and Jonathan were home over Christmas. I treasure these pictures that were taken the day we told the kids about Anna's diagnosis.

The Disease

I hesitate to tell the next part of the story. Not only does it reveal a major character flaw I have nursed for years–a stronghold, really–but it also is very technical.  I am not sure that all of you will be interested in the specific medical information regarding Anna, but I have fielded many questions I think this post might answer.

When we were told that our Anna was sick, the doctor and genetic counselor mentioned the name of the disease she most likely has: autosomal recessive polycystic kidney disease.  This diagnosis is not certain for several reasons.  First, a genetic test is necessary.  For this test, samples are taken from Anna and from me. If both samples reveal the specific gene, then Joey and I are both recessive carriers and Anna has the disease.  That confirmation also would mean that each of our children has a 25% chance of having this disease. If the gene is not found in the samples, then there is a chance that it just “didn’t show up” on the test. If it is not confirmed, each child has an up to 25% chance of having the disease. Pretty murky stuff.

We tried to have the test but found out it was going to cost us over $3500 out-of-pocket and there was still an alarming possibility that we would not get a definitive answer.  We can also opt to have the test done after Anna’s birth, so we have put off the decision.

After doing a little internet research (another big no-no that moms seem incapable of avoiding), I learned that the disease is fatal and that it typically shows up in children before the age of five. Abby is six; Josiah is three and a half. I felt confident that Abby was okay. She has never had any symptoms.  But Josiah is younger.  And one indicator of the disease is hernias in the stomach.  Josiah had a small one at birth that you can still see above his navel.  He has no other symptoms, but that one was enough to prompt me to call my pediatrician and ask for an ultrasound.

Our pediatrician called the hospital and had us worked in the next day, December 22nd.   I decided to go ahead and have ultrasounds for both children because that’s just how I function. It was an expensive early Christmas gift to myself, but I wanted to be reassured of my children’s health so I could relax and enjoy all the festivities without continuing to worry about the possibilities. I would have been willing to have taken out a loan at that point.

I got the kids buckled into their carseats and drove to the hospital, where they would have their ultrasounds.  My mom was meeting us there. In the van, I told the kids I thought it would be fun for them to have an ultrasound done–just like Mommy had done at her doctor’s office!  I told them how the ultrasound technician would squirt this jelly stuff on their bellies and we would get to see pictures of their insides.  I actually had them excited about the whole procedure.

Once we were in the ultrasound room, I giggled with Abby when the technician squirted the jelly on her belly.  “Won’t this be neat?” I asked her.  She was clearly excited.  My mother sat in the corner holding Josiah. Watching the screen, I looked for black spots on her kidneys and did not see any.  I also noticed that the technician was not measuring any specific areas, which is something the technician had done while studying Anna’s kidneys.  I watched her face carefully.  Then it was Josiah’s turn. I watched as the technician looked at his kidneys through his stomach and then through his back.  Again, I saw no cause for alarm, but I knew that there might be things unseen to me that would have been evident to someone with training.

When the technician was finished, I looked in her trained eyes and said, “I know that you cannot tell me the results of the ultrasounds.  I know a doctor has to read them.  But can you answer this question: Did you measure any cysts?”

“No, I did not measure any cysts,” she said, professionally but kindly.

I felt enormous relief.  But not complete relief.  Remember what I said about having that stronghold? Fear. I know that fear is a natural human emotion.  But God clearly tells us in 1 Peter 5:6-7 that He will carry it for us: “Therefore humble yourselves under the mighty hand of God, that He may exalt you at the proper time, casting all your anxiety on Him, because He cares for you.” Instead of casting all my anxiety on Him, I tend to cast it and reel it back in.  Then I feed it and plump it up a bit.

Abby’s results were back that afternoon.  She was clear–perfectly healthy kidneys.  The chance of her being diagnosed in the future is almost zero.  But there were no results for Josiah yet. My pediatrician explained how the results were read by different people in different locations and that it meant nothing that Josiah’s were not read yet.  But that answer did not seem good enough.  My mind began to wander.  I had moments of panic. Maybe someone had read his test and was getting a second opinion or seeking the advice of a specialist.  I spent that afternoon and that evening hoping for the best but fearing the worst. 

I need to say something here that I don’t think I have done a good job of expressing.  We have wonderful friends and family.  People were checking on us and reaching out to us. We were not alone in this. I had one friend who, the day after that first ultrasound, brought enough food to feed our family for a week.  The night I was worried about Josiah, I sat down on one of my neighbor’s front porches and cried as I shared all that was consuming me. My mother was especially helpful during those early weeks because she was truly grieving, too. Crying with her seemed very natural. And Joey’s parents, brothers, and friends listened to him and held him up when he was trying to be strong for me. We are and were so thankful for the prayers and tangible support of everyone

And, boy, was I thankful the next day when my pediatrician’s office called mid-morning (after I had called first thing) and gave me the greatest Christmas gift I could have received.  Josiah’s kidneys were clear.  There were no problems with either of my children.  With no urinary tract infections in their histories, I could be confident that they did not have ARPKD.

I turned to God and prayed my first prayer of praise in weeks.  And just as He had heard me in my angriest moments, He heard me cry out to Him in relief.  Abby and Josiah were well.  And I was thankful.  It felt so good to be thankful. The next day was Christmas Eve, and I began to feel as if I could breathe again.

Josiah and Abby in front of Christmas tree