Fear and Loving in Apex

My family’s fight against Cystic Fibrosis began day one. Bella’s first complication was before she even left the hospital. She had a meconium ileum, which is blockage in her intestines and common in infants with CF. I had given birth in small hospital and Bella had to leave to go by late night emergency transport to Johns Hopkins where she had surgery at two days old. After surgery she stayed in the Neonatal ICU for two weeks while we sat by her crib all day and then had to go home each night. Sitting in the NICU, in the middle of my horrible experience, I couldn’t help notice that I was surrounded by people having similar horrible experiences. Many of them were going through situations worse than ours.

I had unwillingly become a member of a community I never asked to join: a widely dispersed group of people that have been forced to acknowledge that pain and suffering can happen at any moment. Sometimes, like in our situation, you realize the problem isn’t going away and this becomes your new reality. In order to keep going you have to adapt, which is just another way of saying; altering our character to fit the new circumstances. For me, it was also when two opposing outlooks on life began fighting for control: fear and compassion.

I have never been the compassionate type. My approach can best be summed up as a “get over it” attitude towards other people’s problems. In all fairness I am not that much easier on myself. I have always had a suspicion that we cause our own problems. I think that is why I have a tendency to feel a little ashamed when things go wrong. I tend to isolate myself and suffer in silence. Compassion, by comparison, is a willingness to go beside someone and share in their pain and suffering. For me to choose acceptance and compassion over fear and isolation would take a complete restructuring of how I think. So when I found myself in the midst of crisis, fear was the most natural place for me to go. Thankfully some amount of fear is beneficial; it has given me the motivation I needed to take all the necessary precautions that keep Bella healthy. It can’t be a place I stay too long though; or I’d just curl up into a ball with my hand sanitizer.

One of the most menacing threats we have encountered can be described in three words: hospital waiting rooms. We have spent quite a bit of time in the top hospital waiting rooms in the country; right alongside some of the sickest people in the world. During one of Bella’s first appointments I was sitting next to a woman whose child also had CF. Thankfully at this time I could keep Bella in a stroller with the infant car seat carrier and the sun visor pulled up (subtle I know). The woman told me her child, who was not much older than Bella, had already had pneumonia 3 times. I wish I could say that I put my arm around the woman and gave her a few minutes of encouragement right there in the waiting room. But honestly, inside my head I went into survival mode. I did the only thing I know to do when trapped with sick people, I held my breath. Turning the other direction to nonchalantly breathe (the person on the other side of me was probably there for the Pediatric Plague clinic). Maybe that was the right thing to do in light of how serious pneumonia can be for a child with CF, but I still wish there had been more than just the faintest inkling of compassion. Sometimes change doesn’t happen overnight.

I guess it appears that fear is winning this battle, but don’t forget about my secret weapon, God is in this picture too. The Bible says in Philippians 1:6 –and I’m paraphrasing-- that as a follower of Christ, I can be confident that Jesus has begun a good work in me and will make me a better person, more like Him. One of the reasons I am confident in my faith is because of this verse. The changes that have taken place within me are so obviously outside of my own ability that it has to be Him doing the changing. How He is pulling off this drastic change even further proves my lack of involvement; He is fostering a heart of compassion within me that counteracts my fear. Definitely not the way I would have gone.

Recent events have me suspicious that God is conspiring to make me a better person through connecting with others. First our family moved to Apex North Carolina, a.k.a. the CF capital of the world. I am amazed with the number of CF families that live in this area. Bella’s new kindergarten teacher lives next door to a man with CF, the owners of the local Chick-fil-A have children with CF and their restaurant has become a CF Hotspot, and I was a part of the most amazing meeting of a fellow CF Mom at my church who happens to have a daughter Bella’s age. She even convinced me to take part in Great Strides, which I had not yet gotten up the courage to join. Great Strides is organized by the CF Foundation bringing together people all across the country to raise money to find a cure for this disease. Being a part of Great Strides was a heart changing experience for me. And now just a few months later, I am writing about my life hoping people will want to take part in this experience with me and my family. Sometimes, change can happen overnight.

I have been trying to find a way out of the Pain and Suffering club ever since I was initiated back in the NICU. As a result I have focused all my attention on… my pain and suffering. What would happen if I realized that hard times are going to be there regardless of what I do, could I then focus more on living in spite of my troubles? I think that this is what Jesus was trying to say in John 16:33 “I have told you these things so that you will have peace. In this world you will have trouble, but take heart! I have overcome the world”. Is it just me or was Jesus saying “get over it” in a really Godly compassionate way? I might be wrong on that one, but for sure He doesn’t want us dwelling in the clubhouse.

Bad news has a way of stopping us in our tracks and putting our lives on hold, but the reality is that sometimes that bad news sticks around for a while. Our pain and suffering starts to define us and make us who we are. Having a child with a chronic life threatening condition is influencing who I am as a mother, and as a person. I’ve had the opportunity to indulge in some of my idiosyncrasies knowing that I am ultimately helping her stay healthy. But that was expected. How amazing is it then when the unexpected happens? Right in the middle of all that trouble I have been trying to avoid, I find a freedom from my fear and the ability to truly connect with other people. Could it be that I didn’t know what was best for me all along? Looks like things could be getting interesting!