What would it take for you to stand still in the face of a storm? I talked about how this verse from Exodus kept coming up repeatedly in the months leading up to our diagnosis. We have a small group of families from our church that gathers on Sunday evenings to have a meal together and discuss the message from church that morning. One of the questions for our group discussion the Sunday before our diagnosis was “How does reading the Bible contribute to maintaining hope during difficult times? How have you seen this play out in your life? APPLY IT: What Bible verses or passages have given you hope during challenging times in your life?” It seems so surreal to me that just 5 days prior to getting this diagnosis we were having this conversation. When I say that God had been preparing us for this moment, I really mean it, I can go back and find so many tangible examples like this from the months before we found out about our baby. I brought up Exodus 14:14 to the group and talked about how I think that to be able to stand still in the face of oncoming turmoil, you need to have already laid the foundations. You have to be reading your Bible, and know God’s word, and surround yourself with people who are going to support you and bring you back to God when you feel lost. I talked about how we had not faced anything truly challenging since we had started to grow in our faith but how I could see that having these spiritual disciplines was preparing us for when trouble might come our way. One of the dad’s in our group, a good friend of ours, shared a story that he said he had heard about a couple that was looking to hire a farm hand and after several interviews they asked a candidate why they should hire him and he said, “I can sleep through a storm,” the couple didn’t understand what that meant but they ended up hiring him. When the first major storm came, they went running out of their house to “batten down the hatches” and what they found was that everything was already done and their farm hand was sound asleep. He was prepared for the storm, so he could sleep through it.
The morning after our visit to Riley, I woke up feeling overwhelmed. There was not a clear path forward. After our initial anatomy scan, a friend from church had sent me the phone number of a mom whose son had also had a congenital diaphragmatic hernia. Her name was Joy, and even though I had asked for her contact info, I knew I had not been ready to have that conversation yet. I needed to know more. I didn’t want to talk to someone who had a severe case and get totally freaked out just to find out our son’s condition was minor, and I definitely did not want to have a conversation if it was going to be the other way around. So now that we were somewhat aware of what we were facing, I felt ready and I sent Joy a text. She called me immediately. We talked to Joy, a complete stranger, for 52 minutes that day. She told us about how doctors had given her worse odds than we had been given, recommended she terminated, but she sought a second opinion and that is when she found Dr. David Kays at the John’s Hopkins All Children’s Hospital in St. Petersburg, Florida. He was running a first of its kind center for treating babies with congenital diaphragmatic hernias (CDH), and he had an over 95% survival to discharge rate. She told us all about her son, his diagnosis, treatment, discharge, and life since. She sent me a bunch of pictures and gave us a lot of information and told us she was available to us any time we needed to talk, and I could tell she meant it. We got off the phone with her, and I remember I looked at my husband and said, “well that’s great but it’s not like we can just go to Florida,” we both sat in silence for a minute or two until I said, “CAN we just go to Florida?” He said, “It sounds like we might have to.”
Feeling overwhelmed by the path ahead of me, I decided to just make one phone call. I would call Riley and ask them to give us a referral to both Cincinnati Children’s Hospital and John’s Hopkins All Children’s Hospital and have our information sent there. I had decided if I completed just this one task, it would be better than nothing. So, I did it, and I thought that was enough for the day. I had no idea the ball that I had rolled down the hill. By the afternoon I had heard from both hospitals, they had received all our information from Riley, and we had calls scheduled to discuss and schedule the next steps. I had sent a brief synopsis of what we had found out at Riley to my Bible study group and one of the women responded that she was a NICU nurse and made some recommendations for getting things lined up with our insurance. I had been able to take care of all of that already. And my husband had already spoken to his manager and got the unofficial ok that he could work from wherever he needed to work from, for however long he needed to.
I sat there after I got off the phone with my insurance, I remember it was 503pm, and I started thinking about everything I had accomplished that day when all I had set out to do was make one phone call. It was then that I remembered what one of the women from my Bible study had said after I had sent the news about the baby the day before. “Praying that God parts the sea you’re facing. That you feel loved and held through this. And that He sustains you moment by moment.” I scrolled back and read it repeatedly and I just started crying. I have never in my life felt like God had spoken to me but in that moment, I knew without a doubt He had, or at least He had tried to. All week I had been repeating this verse to myself, reminding myself that the Lord would fight for me, that I had laid the foundations, and that if I put my trust in Him, He would fight for me. But when the truly scary news came, I started to panic, and God tried to reach me in that moment. He saw my fear, and He tried to remind me through her prayer that He was fighting for me, that He would part the seas for me, and boy did He.
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