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.
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