Litte Brave, Big Mistake

Bella and I recently went with my parents to a quirky theme park in Maryland called Frontier Town. The park is a replica of an Old Western town inhabited with cowboys and loaded with activities to give visitors an idea of what life was like back in the Wild Wild West. We left that day with a new appreciation of the daily struggle these brave men and women faced; overpriced mediocre food, caffeine-fueled kids running rampart throughout town, and enduring long lines for the bathroom. It’s a miracle they survived at all.

First up for the day was a bank robbery and a crowd was gathering across the street from the bank in anticipation of the action. In hindsight it probably would have been a good idea to give Bella a heads up on what was about to happen. Two cowboys raced up to the bank screaming “this is a stick up” and ran inside after which there was a lot of screaming and yelling. I will never forget the look on Bella’s face: a wide eyed blend of shock and confusion. This was the last thing she expected to be happening. Then out came the bandits with pistols blazing. Bella didn’t hesitate a second before bolting off behind the crowd. I finally caught up with her behind the chapel and tried my best to reassure her “this is pretend honey, I wouldn’t bring you somewhere with real guns!”

I finally coaxed her around the front of the building. “See, they are acting…the dead guy is okay…look he is getting up.” But it wasn’t working so it was time to move on. Next up on the program was an Indian Dance demonstration. A trio of authentically dressed musicians and dancers gave a great performance of contemporary music written to honor Native American women who have served in the Armed Forces. Bella didn’t really get it but nobody was killed so I think she was content. After the show one of the performers offered to paint the kid’s faces. Bella was all for that, she loves having her face painted. Things were looking up.

Next up was a train ride, one of Bella’s favorite modes of transportation. I think Bella and I were the only two people surprised when the train was robbed by bandits. I felt so bad for Bella. She must have thought we had stumbled upon the most dangerous place on Earth. Usually when we ride a train Bella begs to go again, but not this time. She couldn’t get away from that depot fast enough! It was time for the Dance Show Revival anyway so it was nice to be able to leave without a fight. Everyone crowded in the authentic looking Saloon and –wouldn’t you know it -- just a few minutes into the show a couple ruffians storm the stage and started manhandling the dancers. The Sheriff and his deputy tried to escort the troublemakers out but – of course - a fight broke out. Dead serious Bella looks at me and says “let’s get out of here”. Right at that moment the Sheriff throws one of the bad guys down the stairs right by us. That was it….time for a pony ride. Bella and I snuck out and headed to the stables where she was able to have a robbery-free 2 minute pony ride!

There was only one more thing to do before the finale: a Stage coach ride. The stage coach looked like the real thing with two huge work horses resembling beige Clydesdales. I think we all knew the game by now, especially when the guy who helped us inside said “have fun and be sure to keep this box of gold safe!” A few minutes into the ride a robber poked his head in the coach. Before he could even finish his sentence Bella said “We have your gold. Here it is, but we didn’t take it!” And she reached down under the seat grabbing the big box of pretend gold and handed it to him. We all sat there in complete shock. It was the bravest thing I had ever seen.

It was now time for a little shopping therapy. We tried to ignore the reenactment of the OK Corral happening in the middle of the street (“honey they are not really dead, I would never take you somewhere dangerous, see they are getting up! It’s just pretend”). The first store only had the cowboy stuff: pop guns, pretend shotguns, and pistols with holsters, there were even pink guns for the cowgirls. She wasn’t interested. Then in the leather shop next door, tucked in the back, we found what we were looking for: brightly colored feathers on leather strands with a clip to attach to her hair. Grandpa completed the outfit with a beautiful Native American beaded necklace. The transformation into an Indian brave was complete.

We moved toward the big rodeo ring in the back of the park and sat on the top row of the bleachers. The other visitors that day were made up of mostly boys in their cowboy hats holding their toy guns and a few cowgirls with pink guns and pink holsters. There was even one hybrid girl wearing a feather headdress and a pink gun and holster set. But there was only one Indian princess that day, guess who. I admit I was surprised Bella didn’t go for the cowgirl look. I don’t personally know any cowboys or Indians so I am drawing conclusions from movies; but I think of Cowboys as fun loving, high energy, adventurous and prone to fighting—that’s Bella! And she is definitely not against Cowboys. She is still talking about one particular 5 year cowboy she just walked up to and started bossing around right before we left (“let’s go this way cowboy”).

So this is the point in the story where I give some deep insight into why she decided to be an Indian over a cowboy. It is a little awkward because it goes against my expectations of my daughter. I have been thinking about this for almost a month and can’t come up with any explanation that doesn’t sound cliché and stupid. So I can either forget about writing about this and start over or admit the uncomfortable truth: I thought my daughter’s personality and character could be summed up in a neat little package. How could I think she was so uncomplicated, and worse yet, why did I think just because I’m her Mom I had a right to make any pronouncement at all. I was fully intending to pick apart her spontaneous choices made one hot June day and presume traits that I would attach to her forever. So five years from now when I come home from work preoccupied with my own life and she is acting moody I’d could just chalk it up to her “Indian-like quality” I would forever miss getting to know the Bella at 9 because I thought I already knew everything about her…at 4. God tells us he can change hearts, how many times does he change someone close to us and we never even notice because we are so sure we already think we know them so well?

Well it was finale time. Before the action an MC came out and threw me for a loop (not literally I wasn’t in the show). He said a “cowboy prayer”. He thanked God for allowing them to live the life of a cowboy and asked for safety in the ring. He prayed it all in the name of Jesus. It was really shocking to hear Jesus’ name spoken in public. I waited, frozen; nobody got up and left or booed. I am sure there were non-Christians there so I guess everyone gave some leeway since these guys were getting ready to jump into a ring with a really angry bull. All the different actors from the day were there. The Sherriff and the bank robber came together as Bull fighters. The rowdy ruffians and the dancers from the Saloon came out to cheer on the cowboys and do their own routines. It was patriotic; it was funny and exciting to see the cowboys ride the really mad bull. When it was all over and we were leaving I think Bella finally realized there weren’t any real bad guys that day after all.

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.

The Truth Shall Set You Free

A few years ago I received a gift....my daughter Isabella. He gave her something too. I don’t know if she’ll ever think of it as a gift though. He gave her Cystic Fibrosis; a genetic disease that makes her mucus thick and her lungs prone to infection. I think the most distinguishing characteristic of CF is that it’s a fight you start from day one and you don’t stop, ever. You don’t stop fighting it because it doesn’t stop attacking your child. You can’t stop her body from producing mucus; it’s a defense that unless you have CF is very beneficial. But for someone with CF that mucus is the enemy. We fight it sometimes 24 hours a day when she is sick. Our arsenal is medicine, food, vitamins, and exercise. I have a secret weapon though, hope. Hope in a God who loves us and wants the best for us.

You can agree or disagree with me, but at the very least it is worth discussing. When you have a sick child you tend to wrestle with these issues. The “why?” question is a given. But lately I have been thinking not only about how I get through the tough times and interpret my experiences but how Bella will. It’s this question that led me to write about this journey. So it makes sense to be upfront about my beliefs. I simply want to present my faith as it is… a normal part of my life. No soapboxes and no preaching.

I’ll start by saying I’m an inquisitive yet skeptical person. I have delved into almost every belief system that exists, found it lacking, and gone in search of something else. I traveled a strange road from Mysticism to Kabbalism. I swung between being a Buddhist and a Rosicrucian. Shamballa meditation? Did it. Tibetan Buddists? Hasn’t everyone followed one? Psychic mind traveler’s camp? Yes I did! It was a roller coaster of different philosophies… some running right into each other…is it possible to believe in the collective unconsciousness and cosmic consciousness at the same time?

I wanted to believe each one of them because I was on a search for truth, or so I told myself. But the funny thing was that I was a Christian before starting this magical mystery ride… so what I was really doing was running from the truth. I ran from my faith when I didn’t have the strength to be different from everyone else. So I spent the next 20 years still being different, but looking for a “cooler” explanation. And when I found a new explanation, trust me; I went “all in”. How many people are serious enough to spend $350 for a set of 23 books written in Aramaic and Hebrew…when they don’t read Aramaic or Hebrew? I didn’t stop there. Could we all just be Aliens? Don’t rule it out. Everything we see is just a hologram? I can’t be the only one who fell for that one. Hey, fluoride really could be keeping us from maximizing our full brain potential, right? I chanted, transcended, went out of body, meditated, medicated….but still in the end, I had to get up and go to work in the morning. It was all empty, and I was always the same.

After a while running stopped being fun. I started to realize I was wasting all my time looking for truth, and at this rate there would be no time to rest in that truth. Then, and I swear I am not making this up…the Dalai Lama told me to go back to being a Christian. I was listening to him speak at the National Cathedral and he was telling us silly Americans that making up religion to suit our needs doesn’t work. The whole point of following something he said was trusting they have the answers you don’t, and this American generation was a little too uncomfortable with that. He said that while it made sense for Tibetans to be Tibetan Buddhists, Westerners could do just as well to choose Christianity. It was the act of making a commitment toward a faith that was important. At the time it made sense. So I walked back into a church thinking I would join the choir, meet some new people and everything would be pretty much the same.

Now, I will say that more than a few years later… I can’t believe I fell for the Dalai Lama’s speech! Because really Christianity isn’t Western and Tibetans need Jesus too! But what the heck, it worked didn’t it? I was back in church again; God had me right where he wanted me. I can clearly remember putting all the pieces back together again and realizing I was a complete idiot. Yes, Jesus did do everything 2000 years ago, leaving me free to stop looking and live. Finally! It is the wild ride I always wanted. It is without regret, or doubt. God comes through. Period!

Everyone has crisis in their lives, and everyone will eventually need a crisis plan. Our family’s fight is CF, you and your family are no doubt facing other issues. My advice is to take the time to find that crisis plan before you need it. I was fortunate; when Bella came along I already knew where the hope and strength would come from. It has made all the difference in the world.

My experience with all these different ideologies makes me somewhat of an expert on dead end roads. I have no doubt the road I am on now is really getting me somewhere. And, like my friend the Dalai Lama alluded to all those years ago…only when you aren’t the one driving can you reach a destination beyond your wildest dreams.