August 21, 2012

Life Besides CF

This post has been in the draft folder for a while now. Partly due to not understanding the reality of what has happened over the past few years.

CF is not an easy road. It starts out with the diagnosis, which feels like falling out of a tree. You skin your elbows and knees, and limp along for a while, trying to act like it's no big deal. It really is, though. It ends up being this huge, enormous plunge into a scary, medical world. And, it's no fun place for a single mom.

Yeah ... single. Not in a legal sense. Not even in appearances to some. But single in the fact that every treatment, every pill or syringe administered, every tear cried over my first born, my baby boy, was done alone. It has been a major struggle. Some mornings, I would wake up and wonder, "Can I make it another day?" It felt, at times, like I was succumbing to isolation. Succumbing to this hospital in our home. When I look back over the past, nearly 9 years, I see a blurry whirlwind of hospital admissions, treatments, experiments with different medications, on a lung function roller coaster. Had I not done it alone, I'm sure it would have still been extremely difficult. But, I wonder if, had I had someone to cry on, someone to scream at about how CF is so unfair. Someone who would let me be unreasonable from time to time. I wonder how these past 9 years would have seemed. I was angry. Angry at the choices I had made. Angry at the cards that had been dealt to me. I was chained to the bed I had half-hazardously threw together.

I know it was all for a reason. I did it on my two feet, with my two hands. Having my parents so far away was hard, but mother's comforting voice over the phone line, and a prayer that would bring temporary relief at the end of a difficult day. Somehow, God has carried us through, even though it felt more like I was being pulled through it blindly. I made it through with broken limps, but still standing.

Suddenly, there was someone in my life. Almost like someone inserted an "end scene" smack in the middle of  a dramatic argument. Suddenly, I was not alone and at first I didn't know what to do with this person I could lean on. This man that would listen to me scream about how unfair CF is. He would patiently hold me through my emotional moments. How this came to be, I can't figure out, but it is absolutely meant to be. The first few months of our relationship, I felt like I was staring at him with strange amusement, wondering, "Why the heck would anybody want to willingly be on this crazy CF roller coaster?" We were chatting online one afternoon, and one simple sentence he said impacted me so much, that I had written it down, and kept repeating it in my head: "You don't have to carry the world on your shoulders, Atlas". As hard as it was for me to admit it, I needed him, my hero, to wrap me up in his arms during the fast, downward plunges, and a beaming smile on the climbs back up.

Suddenly, I can be a better mother to these two kids. Not that I was a bad mother before, but, the best of me comes out. My broken limps are mending, and I stand taller. I realized soon after I met him that there is more to life than CF. I can focus on something else besides what medication comes next. I keep looking around and wondering if the sky has always been that blue. Has the birds always sang so cheerfully in the morning? CF is definitely still a roller coaster. It still feels like a monster that sometimes pins his lungs down in the middle of the night. It still hurts to hear him cough and hack after having a good laugh. CF "ain't goin nowhere", but I have four hands to beat the crap out of it now.
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