The Irony of Prune Belly Syndrome

When we decided that Houston was our best option for AnnLouise's delivery, it was bittersweet. I felt like we would be all alone in this big city. Of course I wanted the best care at our fingertips, but I didn't think I would be able to handle the emotion of being so far from comfort. But of course, as God always does, He provided comfort in numerous ways.

Since AL's birth, we have been navigating another unknown. This one is even bigger than Houston. Receiving the news that our sweet girl has Prune Belly Syndrome was hard to digest. Even with a great medical team in one of the greatest medical centers on earth, we often felt alone in our questions and struggles. 

Prune Belly is rare. 1 in 40,000 are born with this condition. Of those few children it is expected only 50% survive past their second birthday. Some live a long, normal life. Some have a "mild" form of PBS and the next day are on dialysis. It is cruel.

Even more rare than Prune Belly itself is having a daughter with it. Less than 5% of Prune Belly survivors are girls. They are anomalies amongst anomalies. 

When my daughter was born, I went from being a mom who got to innocently play with her child at the park to a mom who was thrust into the world of kidney preservation, bladder excretion, and abdominal muscle development. I have learned the lingo for urology, nephrology, gastrointerology, physical therapy. I have sung praises when I saw my child blow out her diaper because that meant the miralax and her stomach muscles were working. I went from having conversations with moms about Mother's Day Out to wondering if I could ever trust anyone to keep my child and help her empty her bladder in order to prevent a UTI. 

Life changed. The moment I stood in the NICU and heard the words Prune Belly Syndrome, life changed.

With such a rare condition, it is hard to find a doctor who truly knows the ropes let alone folks in a casual conversation. Through this you often feel alone. Despite all the calls, texts, cards, prayers, it is easy to feel like no one on earth fully comprehends your struggles medically and emotionally. 

But last week a new world opened for us. After months of trying to find an excuse, I finally registered us for a Prune Belly conference in Dallas. In all honesty I was nervous to go. I was nervous as to what we may see or hear or learn. It is one of those things that sometimes you want to be ignorant because it is bliss. I thought about that. I really wanted to back out. But we went.

And it was the absolute most amazing week of our lives. 

PBS conference with our girl

Definitely one of the two prettiest PBS girls there!

Dr. Linda Baker and her team of doctors and researchers were there studying Prune Belly Syndrome. From drawing blood (which Cash brags he gave blood in a hotel room to a kidney doctor) for research to being examined by physical therapists, the entire study was all-encompassing. And for a mom with a prune belly child, it is exciting to know someone is finally researching this condition and trying to determine both a cause for it as well as how to make their lives better.

We learned from a multitude of doctors. I was so impressed with the direct access to them as well. Throughout the week if I was curious, I could just turn to Dr. Baker and ask her about AnnLouise and the various topic at hand. We don't have that now. Our urologist is great, and we adore him. He says to call any time. But he isn't usually sitting next to me for a week.

But on top of all the research and all the doctors, meeting the prune belly survivors and their families was one of the highlights of my life. It was an instant connection. Some of the older survivors talked about their childhood. Doctors told them they would never meet another person with PBS. Yet here they were amidst 47 other survivors. 

Patrick, a 41 year old survivor, serves in the Civil Air Patrol!

On the first night they held a dance party for the kids. We sat next to 2 younger families and immediately hit it off. It is one of those things. You don't even know each other's names, but sharing the diagnosis of PBS allows you to know their aches, their fears, and the worry that keeps them up at night. You know the feeling they had the moment the ultrasound turned dark. You can almost feel yourself in the room when the news came their child may not make it. You have wondered the same thoughts of "Will my child do normal kid things?" or "I hope I'm a match if my child needs my kidney." You have cried the same tears and grieved the same pain. The hospital may have been different, but the four walls closing in on you have been the same.

We met a lady named Jenn, a 34 year old survivor. AnnLouise was the only other female survivor she has ever met. In tears she held AL and said, "I see so much of myself in her."

Jenn and her man Miles were high school sweethearts!

Love this sweet family! 

AL and Beaux--Prune Belly besties!

Of course the girl is the one crying...but she got the boys to look. Ha

We met families from Texas, New Mexico, Kansas, New Jersey, California...all over the U.S...Canada, Mexico, Colombia, even Taiwan. Some did not even speak English, yet here we were knowing what they were saying.

One night they held a prayer vigil and read the names of those who had passed. Many of the names were babies who were born and died the same day. One of those names read was from last year, the same day we were set to have AnnLouise at 19 weeks. I gasped when it was read and buried my head into Cash's chest while I held AL tightly. 

Prune Belly Syndrome. The cruelest thing in our lives ultimately brought us some of the closest friendships. But isn't that just how God would do it?

The Heartbeat of America

One of my favorite things in the entire universe is waking up at my parents' house and enjoying the picturesque view with a cup of coffee. Then I like to check cows.

My parents would be the first to tell you I probably wasn't much of a farmhand growing up. A set of knees and elbows don't lend themselves well to manual labor. But as I've gotten older I long for the days of working cattle and just being on the farm. (Side note: For those of you from Texas, we call everything a "farm" where I'm from. You have a crop farm or a cattle farm. For those of you from Arkansas, people from Texas are very particular about a farm versus a ranch.)

I grew up in this little community called Jethro. Back in the day Jethro had a schoolhouse and post office, but that was way before my time. Now Jethro has a few family farms, access to the Mulberry River, a Pentecostal church, and nostalgia of hay meadows and friendly neighbors (half of whom are related). Every time we plan a visit back home, my mom asks what I want to do. Every answer has some version of riding 4wheelers to see the cows and the neighbors, and no trip would be complete without Mrs. Helen coming for breakfast at least once.

A couple of weeks ago we finally got to go back. It was the longest stretch of my life without being in Arkansas--6 hard months. Some may laugh at that, but I was having one of the most homesick spells of my life. Mom knew I was homesick something fierce, so she scheduled for their hay to be cut as we were getting into town. My heart exploded from the smell of freshly cut hay (one of my two favorite smells--I also love the smell of horse sweat).

During the week Cash and I took out on the gator by ourselves in what I would call the longest date we've had since having 2 children. We checked cows (well, we will say check loosely), rode around the farm, drove to the river, and stopped at the cemetery. It was at this stop that I realized so much of what I love today, despite now being 600 miles away, is because of this little community.

Oak Ridge Cemetery, across from JCC

My first time I ever voted was right there in Jethro, Arkansas, in the community building. At the time it wasn't even as nice as it is now. I remember a lot of older folks working the polls and people bringing in homemade pies for the workers. I remember a stove that helped heat the place. I remember voting for George W. Bush, and although my vote was only 1 of millions I felt a part of something so much bigger than me. (Who knew less than 10 years later I'd be living in his hometown? Smaller world than I thought.)

Jethro Community Center

Jethro Community Center

Throughout college I would drive home on election days and vote right there in the Jethro Community Center. I grew to love politics, and it is no doubt that that love was revealed while checking a ballot in a place most of America doesn't even know exists. Well, there and in my parent's living room where my dad and I would talk politics in great detail only to have my mom annoyed and frustrated by the 4th hour of Fox News.

Although I hold to the nostalgia of the Jethro Community Center, it is only one of thousands of places just like it. All across America folks are voting in churches, libraries, city halls, and fair buildings. Heck, my great uncle even had a barn that his community voted in. It's places like these that make up America. Places that even though they are so far removed from voter ID laws they don't even know why they became law, they still make their second cousin show ID because, well, it's the law.

It is the Jethro community centers across America that thousands of us go vote and collectively prove that democracy is not dead. That even with a difference of political opinion, we can still share a great homemade pecan pie. It is where little girls and little boys go with their parents when they vote and then grow up to love politics. Maybe they even become politicians who enact laws, or maybe they become stay at home moms who read books to their children about our country's history. It is a place that we get to share with those who came before us in a process that so many others have never had the freedom to do. It is all these little places that politicians forget exist that really make our country go 'round.

This year on the 4th of July we will gather at baseball games and parades and fireworks shows and be thankful for our freedoms. We may long for a departed soldier who is halfway around the world or visit one who came home in a way we had not hoped. No doubt we will unite in that this is the best country in the world only to go back to our differences tomorrow. America, what a funny country. The place where we debate politics on big stages in front of large crowds, yet the scores of those debates are settled in small towns with infinitely smaller community buildings with nothing but a person and a secret ballot to know what was marked.

It has become cliche and overused, but my gosh am I proud to be an American. Thank you to all those who paved the path for our freedoms yesterday and all those who still fight for them today.

The Greatest of These Is Love

Y'all. I was cleaning up the house tonight and got into the nursery closet. I have all of the cards from both babies and kept saying I wanted to organize them, so tonight ended up being randomly selected.

As I dug into AL's side of the stash, I was overwhelmed with the feeling of love. I read through cards so many of you sent. I found contracts with the funeral home. I thumbed through books we were given about infant loss. These very things held us together during that difficult time.

I put my mind back there, to the place we lived in a mere 8 months ago. My stomach lumped to my throat as I heard AL in the living room with her dad as I read through these reminders of how close we were to not hearing those laughs or kissing those chubby cheeks.

I sat there in that little closet reminiscing too on the absolute love that filled our souls then and still does. Sometimes we don't realize how much a card or phone call or smile means to someone. But for me your words, your love, kept me going and gave me strength. And as AL came into this world, the cards and sweet gifts didn't stop. You all have loved us so well.

Maybe I've said thanks before, but I can never say thanks enough.

I get tired and frustrated. Sometimes I complain about checkups and blood work and prescription refills. I would do a lot of things just to get a nap. I may have even flipped out on the girl at the Wal-Mart pickup today because I absolutely did not want to go inside with 2 babies. I've told Henry too many times that I have household chores to do and I can't read a book right then. In the middle of the night my first emotion of being hurled from my sleep is not "Oh, how blessed we are."

But my goodness. How much was I reminded tonight of the loved poured on us? Love is the greatest gift God gave us. And y'all gave it abundantly (and you still do). Thank you.

AL says THANKS too for the love and prayers!