Saturday, October 14, 2017

Finding Our Purpose

On Thursday my Bible study group went to lunch together for the first time. While sitting in a little nook in Panera Bread we all shared how we met our husbands. Funny, warm memories abounded. I am sitting here laughing at my own memory now--meeting Cash on this little ol' blog. This blog has seen me through a lot of phases in life and has been my outlet when I needed to sit and just hammer out my feelings in words. But I beg of you as I did of them, please don't go searching my old posts. I. Could. Shutter. One of the ladies asked me what I even wrote about before marriage and children. I don't know. Stupid stuff I'm sure. But it was my outlet for that season of my life too, and even though it would be downright humiliating to be forced to reread those posts I am so thankful for getting to express my life through writing.

Lately I've had on my heart what purpose means to me and to my family. A lot of times when we are kids or raising kids, we wonder what their purpose will be. For the first few months of AnnLouise's life I would stare at her in awe and think, "Baby girl, what are you going to do? What is your purpose? I know it will be huge."

Then about a month ago it hit me. She already has a purpose. So does Henry. So do I.

We began visiting folks from our church, mostly shut-ins and widows. It did not matter where we went, the kids were a hit. They adored AL's smile and laughed at Henry's boyishness. One day I sat there and just took it in and watched as little ladies at a local retirement home lit up when AnnLouise would throw a smile their way. And the men, oh those precious men, they would laugh at Henry daring his mother to chase him around the parlor.

You could almost see the memories in their eyes as they watched my children laugh and play. One lady, whom we had merely passed in the hallway, was overjoyed with their smiles and waves. I heard her tell another resident, "I needed that today."

When I got to my car, I could have wept. Neither of them have to wait for a purpose. They have a purpose today. Their purpose may change as they grow older, of course it will. But today, today they already have a purpose. And those shut-ins? They have a purpose too. They STILL have a purpose, and they need to know that.

We all have a purpose. I mean, we are told that from day one in the church. For me I think I've always looked at that as "big picture" purpose. Sure, I have a purpose--something that when I look back in life it will be the really big thing that sticks out. Yet I've come to realize our purpose is daily, hourly even. Our purpose changes over time and evolves. It can look big and life-changing. Or it can be small and life-changing too.

all giggles before a football game

He only takes a picture standing still if I am with him. He also had to have his rain boots. The high was 84. No chance of rain for about a year.

playing with Mr. Lion

The Bible study I'm in right now has the theme of making room. They've talked about making room for your kids, the brokenhearted, our neighbors. Then Thursday they talked about making room for orphans. I thought I would zone out. I mean, I don't even know any orphans to make room for.

As the lady spoke I tried to choke back tears numerous times. I'm not a crier in public. When I told my group last year that we were losing the child I was pregnant with I just said it stoically and did not shed a tear in front of them. So when I was choking back tears throughout the talk on orphans I did not know what to think. Where was this even coming from?

The speaker described one of the foster children they ultimately adopted. When he was first placed with them they were shocked to find out (after some time) that the child has a rare condition. When they took him to an annual check-up in Austin, the doctor told them he was doing great as usual. And then she recalled his words, "It is amazing what love can do."

That came full circle for me. Purpose. Making room. Love. That's it. That's what we are called to do. Love--that's our purpose.

Whether it is the widow in the nursing home, the pre-teen boy who can't quite figure out how to navigate his way through middle school, the innocent girl who was thrown a medical curve ball, the orphan who longs for a home--our purpose is the same. It is to love. When we do that, we will be amazed at what God can do.

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.


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?