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!

House of (control) Freaks

The Pellicano household is made up of raging control freaks. While this makes coexisting a little challenging at times, it’s actually comes in pretty handy when fighting Cystic Fibrosis. Treatment is tedious and invades every area of life. We are fortunate that there are a lot of resources for CF families: brilliant doctors, nurses, respiratory therapists, physical therapists, pharmacists, nutritionists and even social workers to help us get through the maze of health care red tape. They dedicate their lives to keeping our children healthy; however executing the treatment day to day falls squarely on our shoulders. We have to figure out how to get her to take the medicine, entertain her for hours while she does her treatments, find fun exercise to keep her active and create just the right amount of fear to keep her from drinking from a water fountain.

As befitting the classic control freak persona, each of us believes we are the supreme CF caregiver. There is definitely an element of competition in our daily activities. And the Super Bowl of competitive CF care is who can get her to eat the most food! Currently I fluctuate between two philosophies “eating is fun” and “eating is lonely if you take more than an hour”. Every once in a while I may throw in a little “Mommy Dearest” technique if the other two methods don’t work. I admit the stress of having to get a 4 year old to consume 2000 calories a day has driven me insane. I will do anything to get Bella to eat. Anything. Is she more willing to eat pancakes sitting outside dressed as Snow White? Apparently yes! What if she decides to only eat food stabbed with toothpicks? I packed her lunch that way for a week. And if her best meal in days is the samples at Harris Teeter, you better believe I’m going to load her up with enzymes and make 3 rounds!

My husband Anthony and I tag team on the care but we each have our specialties. Anthony is great at focus, exercise, entertainment, and security. My calling is to be the family Advocate. I love to talk to people about CF. Her first day of preschool I had handouts. My persistent nature really comes in handy when it comes to keeping Bella from getting lost in “the system”. When I didn’t like the treatment plan an ER Doctor had laid out, I told them to wait while I called the Pediatric On-call Doctor at John’s Hopkins. (Hopkins Doc agreed the ER Doc was a freak and told her to send us home). At the height of the swine flu craze, I drove an hour to a small town in Virginia when I heard they had some of the coveted H1N1 vaccine. I have questioned an Urgent Care doctor’s choice of antibiotic, made treatment suggestions to the head of Pediatric Pulmonary, and have sat on hold for hours on more than one occasion to clear up an insurance mistake. The front line pulmonary crew appreciates my taking an active role in our daughter’s care, but I have definitely upset some people… like the nurse I asked if she washed her hands. Now you know why our family needs security.

Bella is already handling her disease like a true petit control freak. She goes toe to toe with us on everything. She negotiates, barters, bullies and is a brilliant manipulator! She knows when her medicine is done, how to put together the nebulizer cups, when I forget to give her an enzyme, and can get a lollypop (and in one dazzling exchange, a stethoscope) out of anyone!

I’ll be honest; I worry a bit about Bella’s control issues. While I want to equip her to be successful at managing her own care one day; I also want to instill in her a sense of hope that carries her through the tough times. In order to have hope, you have to trust that everything is under control…even when it feels like it isn’t’. For that to happen she has to know she is not the one keeping things under control. If she starts thinking “my hard work is keeping me healthy” her facade will come crashing down the first time all that hard work doesn’t pay off. She can do everything right and things will still go wrong. If she acknowledges God is in control, then she might avoid falling in a pit of self blame and guilt. My hope is that she goes to God when things are bad and trusts Him for her healing. She will still have to be persistent in her treatment, and there will be times God chooses not to make things better. But at least she will be on the right track toward peace and acceptance of her circumstances.

I know that the question a lot of non-Christians ask at this point is: If you believe God is in control, why not sit back and do nothing? I really don’t know the answer to that one. But there is a reason God allows bad things to happen to good people and why he gives us the desire to try and fix them ourselves. My belief tells me that our devastation is Gods communication. How else to get us control freaks to let go and trust him but through dazzling examples of how powerless we really are? But do we stop striving and trying to make a difference just because God is running the show? No way. It is because of Him that our work matters and he wants us to be a part of His plan. God often acts through people. One of the wonderful things about God is that he loves to involve us in his work. He gave Bella her tenacious spirit after all! Her efforts will make a huge impact on her health-- and make no mistake we will keep fighting CF for the rest of our lives! But my prayer is that while we are dedicated and resolute in our labors, we will still enjoy a life of peace and security that can only come when we accept we are not in control.