Thursday, September 14, 2017

Looking Back One Year Later

Last year on the first day of the Bible study I attend, we were just starting up when the doctor's office called and told me we were having a girl and thus our child would not survive. My world crashed around me with that one devastating blow.

Today was the first day of that same study. The entire time I thought through this day 1 year ago, the month of funeral planning that followed, and the miracle with which God blessed us. Though I never tire of telling AnnLouise's story, this week it has been on my heart and mind even more. A week that could have been eternally imprinted on our hearts with pain is now a week in which I can share God's grace and mercy and shout from the rooftops that His miracles are not over.

It is still hard to remember those days of suffering. Last night at church and this morning at Bible study I shared the pain of walking into the funeral home to plan our daughter's funeral as she turned and kicked inside of me. Now I stare at her smiling face when she looks up at me from her crib. Bone chilling.

Sometimes it is easy to get stuck there, thinking of the heartache and bringing back the misery. But God never ends our story, our purpose, in misery. He did not do that with the Israelites. He did not do that with Jonah. He did not do that with His own Son. We see them in their misery. Oh, we see their sorrows and we see our own sorrows when we are there. But He didn't leave them. And He doesn't leave us. Even when the fiery furnace is so hot that our faces already feel the flames, He doesn't leave us alone in it. He stands with us. We may come out a little burned from the heat and a lot tired from the endurance, but God uses that to share Himself.

So while it is easy to get stuck in how hard things have been, I want to push past that and focus squarely on the love of Christ, the grace of Christ, the mercy of Christ. For us the other side of that pain was the sparing of AnnLouise's life. For you it may look differently. But for all of us, I can promise you one thing: it doesn't end here. We are assured that God uses all things for His good.

One year. As I reflect on this journey these are my top takeaways that God has taught me:

1. Miracles still happen. Big, small, seen, and unseen. Miracles weren't reserved for just Lazarus.

2. Get on your knees. It is easy to pray for something as big as praying for my child's life, but it is so hard to remember to pray for something as small as Henry having a good night of sleep.

3. God really does have a purpose, maybe even multiple purposes. When I met Cash, I was love struck immediately. However, when it came time for me to say I would move 600 miles from my family, well, that was a bit harder. But I was reminded last week that Cash and I didn't have 1 town or 1 church praying for us. We had 2 towns in 2 states and multiple churches in both praying for us. God allowed us family and friends literally all over the world. We were covered, no, SLATHERED in prayer.

4. You're not alone. Sometimes I got stuck in a bubble and felt so bad for myself and my little family. But it wasn't just the 3 of us going through it. We had mommas who were crying and praying for us daily. We had dads who had protected us our whole lives struggling with how to still do that. We had sisters and brothers trying to figure out the words to say to their own children. And we had those very nieces and nephews who ached at the thought of losing their cousin. We had friends, clergy, co-workers and bosses who wanted to give so much love and never knew how much that hug meant. We had doctor's offices who felt lost knowing they couldn't help. God was with us, we knew that. But looking back it is easy to see God shine through all of these people. Yet these very people were also going through our hurt. They may have hurt in their own way and dealt with it in their own way; but they were hurting nonetheless.

5. Be still. Be still and know He is God. Be still and maybe just listen to your friend instead of giving advice. Be still and quit trying to take control of a situation. Be still and quit going to the next big thing or the next big job or the next big house. Stillness is so hard, especially in a world where life happens at our fingertips and through our phones right here and right now. Just. Be. Still.

Thank you for all those who prayed us through this year. As I've said many times, I often could not pray for myself yet you prayed for me. I count AnnLouise your miracle as much or more than she is mine. Thank you. I am reminded of your thoughtful prayers and God's good, good grace every time I see that big, toothless grin.





XOXO,
Avery

Wednesday, August 2, 2017

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?


Tuesday, July 4, 2017

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.