Last October if someone would have told me what our year was going to be like, I wouldn’t have believed them. There have been so many tears, pains, doubts, and fears. But in the midst of it all, there have been moments of joy, inexplicable peace, abundant blessings, and miracles.
“Difficulty is actually the atmosphere surrounding a miracle, or a miracle in its initial stage. Yet if it is to be a great miracle, the surrounding condition will be not simply a difficultly but an utter impossibility. And it is the clinging hand of his child that makes a desperate situation a delight to God.”
-Streams in the desert
October 28, 2013 was the day we found out that Luelle had open Spina Bifida. I was more afraid and overwhelmed than I’ve ever been. I thought about all the things our daughter may never do and all the struggles before her. I thought about how our future looks drastically different than what I had pictured. I remember every moment of that day. I remember the long list of major complications the doctor listed, the big decisions we had ahead of us, and the countless unknowns. I remember feeling so afraid I couldn’t breathe.
October 28, 2013 was the day we found out our second child was a girl that God had already given us a name for. A few weeks prior I had a dream that Lu was a girl so I already knew. I have wanted to have a daughter my whole life. Now I remember the day my water broke and we got to meet our baby girl. I remember the first time she smiled. I remember the first time I saw her little legs kick and toes wiggle, something I didn’t know if I would ever see. I remember the first time I heard her laugh. Oh my goodness I love her laugh. She laughs so much. I remember the first time Bobby held her and stared in awe. I remember the first time Chale carefully kissed her and smiled so proudly. I remember how special it was the first time the four of us were back in our own apartment. We were finally home together.
Since that day in October almost a year ago, I have not slept through the night. Before Luelle was born I would lay awake for hours crying, fearful, anxious, or simply unable to turn my mind off. After the fetal surgery, the pain was excruciating for a few weeks and I slept little. I also had to take medication every six hours to prevent contractions so we had to set alarms during the night. The end of my pregnancy I was admitted to the hospital for three weeks so frequent monitoring and meds kept me up. Now, Luelle is almost eight months old and has yet to sleep through the night. Bobby and I are so tired.
Bobby and I have shared some of our sweetest moments in the middle of the night this past year. I’ve been awake crying and anxious and he would hold me and pray, talk, or cry with me. I have wept and pleaded with the Lord many times in the early hours of the morning. Many nights I would lay awake calmed by worship music or so often the constant, faithful prayers of family, friends, even strangers who were praying for us. Now, although I’m so tired when I wake up to feed Luelle, I look at her and can’t help but be amazed at the little miracle in my arms we’ve been entrusted with.
Last December 1st we packed up our apartment and drove to Philadelphia. We would either return December 2nd if we didn’t qualify for fetal surgery, or not for six months if we did. We did qualify and December 4th Luelle and I had surgery simultaneously. It was terrifying, extremely painful, and a major risk. The months following surgery were more difficult than I had imagined. Every shooting pain, I wondered if I was going into preterm labor. I was on bed rest for three months. It was so hard to be away from Chale for weeks. We lived out of bags for six months moving around to hotels, the Ronald McDonald house, the hospital, and family and friends houses.
As we headed to Philly last year, although we were leaving our community, church, and friends, we were overwhelmed by support. Friends and family from all over the world reached out to us. What a gift to experience the church and community as it’s meant to be. We were covered in prayers, were blessed abundantly with gifts, finances, meals, notes of encouragement, and so many conversations of love and truth. Chale had the time of his life with our families while he was away from us. He was so loved and cared for and has a special relationship with them that otherwise he would have missed out on. We spent such special, sweet time with my sister and her family who live in PA and our families that came up multiple times from VA and MD. During our time at CHOP, we met some incredible people. We had encouraging, meaningful conversations with the staff at the hospital and formed lifelong friendships with families we met in Philadelphia. Many were other families who have children with Spina Bifida. What a gift to meet others who are on such a similar journey. Some were families we met while staying at the Ronald McDonald house. We have been forever changed by their stories of incredible struggle, hope, endurance, and faith. We lived with a family from our church that we barely knew for about a month before we could move back into our apartment on campus. That family continues to be such a blessing to us and are now dear friends that feel like family.
If I’m honest, we’re still really struggling. As I write this, Lu has had over two weeks of diarrhea, was in the ER because she was having 15-20 diarrhea diapers per day, and now has a UTI that we are praying isn’t from bladder and kidney complications of her spina bifida. Her ventricles have slowly swelled since birth and in December she is getting a sedated brain and spine MRI to determine if she needs another major surgery. My back flared up this past week, the worst it has since my spinal fusion in 2011. We are so afraid of my back pain not resolving to the point where I can function and care for the kids.
Often I am angry and bitter about how challenging life has been. Bobby and I went through my first back surgery when we were engaged and we’ve had 6 other surgeries between the two of us since then. We are ready for a break. Often we feel isolated. Some of this is our fault because we have pulled away from a lot of people and activities because we’re exhausted and struggle to connect. I hate that now when I meet people instead of finding similarities in order to connect, I find excuses to pull away. I mentally categorize whether someone’s situation is harder than ours therefore I have no room to share, or easier which means they just wouldn’t understand me.
Another reason that I think I’ve isolated myself is that I didn’t expect to be on the receiving end of support for so long. If I’m completely transparent, it’s because of my pride. We have been given so much from so many people around us. I’m embarrassed at how many meals we’ve received, how many times we’ve needed babysitting, and how many times we’ve had to decline invitations because we were overwhelmed with life. It’s hard for me to accept that I can never reciprocate to the extent we’ve been poured out on. I think sometimes I avoid people because I don’t want them to know how much we are still struggling because I feel like I should be able to handle things by now.
Most days I try to avoid God. I know that’s ridiculous but it’s true. I’m angry with Him. I’m confused. I’m afraid.
I used to think if I “trusted” God, life would be easy and I would get what I wanted. I would never have said that out loud but that’s how I acted. Over the years, God gently has shown me that truly trusting Him means trusting not to avoid struggles but trusting in the midst of them.
Most genuine Christians acknowledge that we don’t believe in a health and wealth gospel meaning we don’t follow Christ to get money, ease, etc. We can be so harsh on churches that push this thinking that life should be peachy if you are a Christian. While this thinking is completely wrong and should be challenged, I confess I often believe a false gospel. I find myself pursuing an emotional health and wealth gospel. I may accept that life is hard and trials will come but I seek Jesus in order to get contentment, peace, joy, etc. not to get Jesus.
I do believe Jesus gives us these things but they are supposed to be a byproduct of walking with Him. Jesus is the prize. I don’t even fully understand it. I think part of it is accepting we will receive His gifts on His terms not ours, which is hard to swallow. Bobby and I were recently talking about contentment. Contentment isn’t a feeling, it’s a choice. I hate that. I want to just feel content but choosing it means choosing it in the midst of hard circumstances. Without Jesus, we won’t be able to choose contentment.
Following Jesus isn’t a one time decision. It’s a daily, hourly choice.
Jesus walks with us and says…
“Will you follow Me today?”
“Will you follow Me even through this?”
“Will you follow Me even if this never happens?”
We have to choose each time to follow Him. So often the path looks bleak and feels impossible and hopeless. He isn’t asking us to understand the journey or even His hand in it. He is asking us to trust Him each step. To simply say yes when He asks us to follow Him.
I have so many questions. I struggle often with anger, fear, and hopelessness. But I do believe God is good. Sometimes I don’t understand it, probably most of the time. But I know He is good whether I understand it or not.
“…so I say, ‘My endurance has perished; so has my hope from the Lord.’
…But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. ‘The Lord is my portion,’ says my soul, ‘therefore I will hope in him.’ The Lord is good to those who wait for him, to the soul who seeks him.”(Lamentations 3:18, 21-25 ESV)