I have found a friend in Jesus, He’s everything to me,
He’s the fairest of ten thousand to my soul;
The Lily of the Valley, in Him alone I see
All I need to cleanse and make me fully whole.
In sorrow He’s my comfort, in trouble He’s my stay;
He tells me every care on Him to roll.
He’s the Lily of the Valley, the Bright and Morning Star,
He’s the fairest of ten thousand to my soul.
He all my grief has taken, and all my sorrows borne;
In temptation He’s my strong and mighty tow’r;
I have all for Him forsaken, and all my idols torn
From my heart and now He keeps me by His pow’r.
Though all the world forsake me, and Satan tempt me sore,
Through Jesus I shall safely reach the goal.
He will never, never leave me, nor yet forsake me here,
While I live by faith and do His blessed will;
A wall of fire about me, I’ve nothing now to fear,
From His manna He my hungry soul shall fill.
Then sweeping up to glory to see His blessed face,
Where rivers of delight shall ever roll.
The Lily of the Valley - Charles Fry
Blogging is a funny thing. For the outsiders, they don't get why we as the bloggers would want to share. But as bloggers we know that our blog is our little place of the world to share with others. It's a way for us to know that the struggles we face are not ones we will see alone. I knew I wanted to write out this story while I was experiencing it because no matter the outcome, I wanted to feel it as I wrote it. But more importantly, God forbid new parents-to-be experience this horrible hell, maybe our story can help.
I woke up early on April 24, 2014 excited about the day. I had been saying for weeks that our child needed a gender so we could end the name debate. I started watching August: Osage County while Brandon showered. I quickly hit the shower afterwards because we wanted to get breakfast. We also planned to start our registry process later that day. Brandon needed a haircut as well. I was looking forward to a day together and daydreaming about what our baby's life would look like when he/she got here.
I had been drinking a lot of water because the doctor's office asks to come with a full bladder. I drank as fast as I could, but I've been dealing with indigestion in the past two weeks and just about anything will set it off. We went to Chick-fil-a for breakfast and I could barely eat from the nerves and indigestion.
We got there and got checked in. We were at an imaging specialist because that's how our doctor's office is set up. We got to the ultrasound room and were set up with the goo. The tech explained that she had to take lots of pictures and that the anatomy scan wasn't as glamorous as people think it is. She took pictures of my ovaries, uterus, placenta, cervix, etc. Then she started focusing in on the baby. She measured the head and the spine and heart and legs and arms. She was having a hard time getting some of the measurements because the baby wasn't facing forward. She sent me to use the restroom in the hopes that the baby would turn around. She didn't and every time she got close to her face the baby would cover her face.
I mentioned that she must be shy and that she got that from her daddy. The tech smiled and kept doing her job. She asked if I had felt her move yet. In the last week and half, I had finally decided that maybe I was starting to feel something. I told her how it felt like my stomach was vibrating the week before when we had watched Captain America and I didn't get up because I didn't want to miss what happened on the movie. She quickly said that she didn't understand how she could sit through a movie at home, but that if she went to a movie, she always had to go.
Now at this point in the scan, we still hadn't heard the gender. Looking back, we both realized how much she was looking at her heart and brain. She found her little kidneys, but said she was having problems finding her bladder.
I finally asked what she thought we were having and she said, "well I've yet to see ANY boy parts." I was pumped because we both loved the first name for a girl and silently said hello to her. After the tech printed out some pictures for us, she said, the doctor would call us back in a second. She said not to be surprised if he turned the ultrasound back on that he was unpredictable in the respect.
We went back out front and then were called back fairly quickly. We had a different tech and she was this sweet old lady. They squirted more gel on my tummy and the doctor was in there running the ultrasound this time. He started looking around and was fairly quiet. I didn't really think a lot about it. He seemed like he was quiet in nature.
And then he said he was going to ask us a series of questions that he asks everyone. I thought nothing about it.
"Do either of you have a history of birth defects in your family?"
Brandon quickly answered no. I struggled to answer the question because well, I'm law school graduate and what the man just asked me could mean a number of things. I told him, "Well, my brother was born with a heart murmur, but it healed on its own. I'm not really sure what you're asking me."
He said, " Trisomy, Downs, things like that?"
"Oh!" I said. "No, no history of that at all."
He said, "Okay." Then he went back to looking at the ultrasound. I thought it was odd that he didn't ask more questions. He had said a series and we'd really only had one question.
So I asked what attorneys call the million dollar question, "Is everything okay?"
He said, "Well, since you asked, I've got some serious concerns."
I could feel the world stop.
"I don't want to stick my foot in my mouth here. But I am seeing some significant abnormalities in her heart and in her brain. She's also measuring about 2 weeks behind right now. All of those things taken together are trademark markers for insert some long scientific name. You don't need to worry about the long name."
He continued..."The most famous trisomy is 21. Most people know it as Downs. There's another one known as Edwards Syndrome. And then there is Trisomy 13 and 18. Those are lethal. The defects are so great that most babies don't survive utero. Of the 10% that do, most live days, but some can live up to 6 months. All are in the hospital the entire time."
"It looks like your baby has trisomy 13."
I had already started crying when he said that he had serious concerns. At this point, I was sobbing. He told us that he had been doing this for a long time and that he would be more than happy to be wrong if that was the case. But that the only reason he wasn't 99.9% was because he couldn't see her face. At this point, he was 98% sure.
He asked if we wanted to see my doctor. They had already set up an appointment with a specialist for Monday. He'd answer as many questions as we'd want, but he'd understand if we'd rather speak to my doctor. My doctor wasn't in that day, but her partner was and so we elected to speak with her. the good thing is that the practice is just upstairs from the imaging specialist. The bad thing is that we had to wait.
We both looked like a hot mess. We were parents-to-be that had just been told our first baby wasn't going to make it. We finally were taken to a room in the back where we had to wait. The on-call doctor had to check on a momma in labor at the hospital. Meanwhile, we could hear sleep-deprived mommas with their newborns in exam rooms next to us complain about lack of sleep and their babies cry.
We listened to this for about 15 minutes. It was a fresh hell. I sat and just sobbed. When I'd blow my nose, I'd take a breath, zone out because I still couldn't believe it and then start sobbing again.
Brandon just held onto me the entire time. Tears rolling down his face as well.
We kept alternating between zoning out and crying. At least that's what it felt like. One of the times we were zoning out from the numbness that we felt, Brandon noticed some a sunflower painting on the wall. I looked at it and then a new baby started crying. I remember thinking that I'd give anything for my baby to be healthy and crying like that.
The doctor finally came in and spoke to us.
She was super nice.
She assured us that there was nothing that either of us had done to cause this to happen.
She said that we had just had some really bad luck our first time.
She encouraged us both to get some sleep.
She also told us that she wouldn't mince our situation by telling us not to worry.
She said that we needed to remember that we don't have an official diagnosis yet.
And then she grabbed my right hand and Brandon's left hand and told us to talk to one another. The only way we were going to get through this was with each other. She told us that we were the type of parents that doctors wanted to see. She teared up and said, "Fight for each other."
She gave us our appointment information and her card. Then we left the office.
My mom had to go out of town that day and I knew that I needed to call her and my dad before she left. Part of our plan included ordering a gender cake for us to enjoy that weekend once she got back.
Up to now, I had cried, but I still was pretty stunned. I told Brandon that I just felt numb. He said he did too.
And then I called my dad and mom. They answered and were so happy to hear my voice. I started to talk and my voice broke immediately.
I told my parents what we had been told. The dam broke. I could hear my mom crying and saying, "Oh sister. Oh sweetheart," over and over again. I finished telling them everything and then I told them I was so sorry. My dad asked where we were and I told him we were on our way to the house to pack a bag to head to their house. Brandon and I had decided to go over there a day early. I got off the phone and continued to cry.
We got to our house and began to pack. I realized that it was 2pm. Our appointment had been 11:15. I remember thinking how quickly a life could change so quickly.
My dad called again and told us to be safe. He asked me some more questions. Said he couldn't hear everything earlier. He told me, "I woke up nervous this morning. I couldn't shake it. I had no reason to be nervous. I finally went into the restroom at work and got down on my knees and started praying for peace. You called 30 minutes later. I guess God was preparing me, but I still can barely talk because I'm so heartbroken for you." I told him not to tell my siblings because I wanted to tell them. He said, he understood that.
I turned around at this point and saw my husband talking to his mom with tears rolling down his face. I tried to pack. I just grabbed some things. It took longer than it should have because I kept zoning out. I just kept thinking over and over again, how helpless I was.
It was at this point that I looked at my phone. My sister and one of our best friends were happily chatting in our group text about how excited they were. I thought about how just a few hours before I was happy and excited for the day and how my life was just so different. Our lives were so different. I also was extremely grateful that we had moved back close to home. I knew we were going to need our families.
We drove to my hometown as quickly as possible. We tried to eat something on the way. I called my dad to let him know we were on the way and he told me that he was already at the house. I asked him why he was there and he said because he wanted to be there for me. It was as if I almost forgot for a moment why we were going to town a day early....and then I remembered.
A few minutes later, I remembered that I needed to call the bakery about our gender cake. I had ordered it a week earlier they were just waiting on a gender. I had told Brandon earlier that I needed to cancel it, but something in me didn't want to do it. I wanted to celebrate her and really I didn't want to believe what was happening was happening. So I called and told them. The girl on the line asked why I didn't sound happy and I told her that my baby had some heart problems so it had been a rough day. I didn't feel comfortable telling a complete stranger that my sweet innocent baby girl was going to die. I got off the phone and cried some more.
We got to the house and my parents and sister Jessi were already there. They had already told her. I was upset because I wanted to be the one to tell her a little bit. But, on the other hand, I was grateful that she knew because I knew that Loren and Will would need her. When our family goes through a crisis, I'm typically the strong one and I knew I wouldn't be able to do that for them. Not this time.
I saw my daddy first. And I just sobbed as he held onto me so tight and told me over and over again how he loved me and that I was his baby. He said that whatever happened, it would all be okay and that he would never stop loving me. I sobbed even harder because I realized in that moment how desperately I wanted to show him my baby, a baby that was healthy and well.
And then I saw my momma.
When I thought about becoming a parent, I worried that I wouldn't have the maternal instinct. I grew up playing with Barbies and my Barbies had jobs. When I played pretend with them, they worked. I played school and office. And that has been my life. School and work. I didn't know if I was going to be a good momma. It wasn't my world. I didn't speak baby. I still don't for the most part. But when I saw my momma, I realized that I had it. I had the maternal instinct because the biggest reason my heart was broken was because my baby girl was hurt and there was nothing I could do about it. I felt this way and I had never seen her. And I knew that my momma felt the same way about me. And while there was a lot of sadness that was a part of our hug, there was a lot of love that passed through us as well.
Shortly after, some family friends of ours showed up. Dick and Karen are like another set of parents to me. I've known them since I was in 3rd grade. I've mentioned their daughter on here before. It was good to see more family. They both told us they would be there for whatever we needed. Dick told my husband that he knows a lot of attention was on me, but he was here for him because sometimes the daddy gets left out and it's just as hard on him. I was grateful that there were men in my husband's life that would stand behind him and in front of him when he was hurting. Men that would be praying for him specifically. Even though I couldn't see it then, now as I write this, I am amazed by how the body of Christ's hands and feet work. Just because we don't see Jesus, doesn't mean that He isn't there and His work isn't going on.
We spoke for a bit and they headed out as my baby brother got home. He walked in and asked why we were there. Tears pricked my eyes immediately. I told him to sit down because I needed to talk to him. I had been so pumped to watch Loren and Will become Uncle Will and AL (Aunt Loren). I told him that first of all, we found out that we are having a girl, but that she's got some problems and went on to explain what was going on. He was so quiet and stoic. He reminded me a lot of our dad. I knew that there were a lot of things that were shaping him as a young man before then. I also knew that this would be one of the things that would be part of his story just like it was mine. It would shape who he would become. He gave me a hug and told me that he loved me. I don't know if he ever cried that day, but I do know that he was extremely quiet for the rest of the evening.
Loren got to my parents' house later that evening. She asked why mom was home and then asked why we were there. I told her to come sit down with us. I grabbed her hand and told her that we were expecting a girl. She smiled. Her smile reminded me that there was still some excitement to the day. Then I told her through more tears that she was sick. She cried with me. I gave her a hug and I told her that I loved her. I knew like Will that this would be an event that would shape her. For me, 9/11 shaped me and changed me in so many ways. It changed the way I viewed the world. I remember the day 9/11 happened and it was so sunny. I remember thinking about how beautiful it was outside and how it was crazy that good and bad happened at the same time. The next two days were gorgeous and equally hard for us all. Both of them would look at me and gaze off. While they never told me, I'm sure they were confused by the same things I was when I was their age.
I was exhausted and so sleep came somewhat easier. I also took some Benadryl because my allergies had been killing me. So I slept hard for a little over 4 hours. But I woke up at 3:56am to my tears. I knew that my nightmare was real. Snakes and the dark were cake walks in comparison to what I'm experiencing. I realized a little more that my maternal instinct was there because I loved someone I've never met. I also was still heartbroken. I just couldn't believe that I was potentially facing burying a child rather than taking a child home.
Dick told me the day before that some days our trust in Jesus would be greater and would come easier. But that were also days where the trust wouldn't come as easy and it would be harder to trust Him. The point is that no matter how small, we are called to trust Him. As I laid there I let myself ask God the hard questions. I cried quietly for my girl and for the loss of what was supposed to be such a happy time in our lives. There was a small chance that the doctors could be wrong. I couldn't let myself think about that chance because it was so hard.
About this time, the sun was beginning to come up. I checked my phone to see what time the sun was going to rise. I was about 15 minutes away from it so I got dressed and headed outside. I wanted to see the sun. I also just felt like I needed to be out there. As the sun rose, there were hymns that kept coming to me.
How sweet to hold a newborn baby,
And feel the pride and joy he gives;
But greater still the calm assurance;
This child can face uncertain days because He lives!
Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!
And then one day, I'll cross the river,
I'll fight life's final war with pain;
And then, as death gives way to vict'ry,
I'll see the lights of glory and I'll know He lives!
An excerpt from Because He Lives by Bill Gaither
Jesus loves the little children,
All the children of the world
Red, and yellow, black, and white,
They are precious in His sight
Jesus loves the little children of the world.
An excerpt from Jesus Loves the Little Children by Clare Herbert Woolston
I just hummed them to myself over and over again. I don't even know if I got the words right in my head. But it was quiet and it was me and Jesus and worship and my girl was there too. I stayed outside a little longer, but then I realized I was tired and I went back inside. And I dreamed of a little girl with long blonde hair with a slight curl running through a field of sunflowers. She had on a white and pink gingham check smocked bishop dress with white shoes. She was giggling like little girls are supposed to and she was running from me. I couldn't catch her, but I knew she was happy.
The remainder of the weekend was hard. I felt our sweet girl move on Friday. It was the first time I knew for sure that it was her. It felt like bubbles popping. I have felt her every day since. I feel her in the morning and in the afternoons. I mentioned above that as Christians we are called to trust in God. Right now, my trust in Him is the size of a mustard seed. Deep down, even though this is quite frankly the worst kind of hell this side of heaven, one can experience, I know that there is a reason for all of this. I don't know what that is yet, but I know it's good. Because His ways are perfect and they are good.
If you are a parent, hug your babies tight. I don't care if the babies are new or if they are adults. Hug them and tell them you love them. Because Jesus loves the little children, all the children of the world...even my sweet girl.
She is precious in His sight. And Jesus loves her too.
No matter what.