Just the two of us, we can make it if we try

I've been thinking a lot about the whole denial thing and what it means with regards to other aspects of my life.

In a lot of ways I think denial served me well. I never lived life focused on CF, I never used it as a tool or an excuse. I sometimes think I am lucky that I treated my CF as I did because I am still susceptible to almost all abx, my veins are healthy, I haven't been overly radiated, etc. Coming to terms with things in my late twenties was the right time for me. Luckily my health didn't really suffer for it. Yes, maybe I'd have PFTs in the 90s instead of the 70s had I been more aggressive, but who knows.

Yet now that I am trying to take a more proactive stance I see the benfit of aggression and focus. I'll never get back the lung function I've lost, and perhaps I didn't need to lose it if I'd done proper care and treatment. It is with gusto that I want to hang on to the 73% I've got left. I've come to understand that CF treatment is a large part prophylactic rather than reactionary.

While I was swimming yesterday morning I started to think about my son. Now that my daughter is 2 and talking and communicating up a storm I realize how delayed my son was in his lnaguage development.

When he was 10 days old, my boy was hospitalized with an infection in his scrotum. It was very wierd and no one was sure where it came from or how it got there. He had a surgery to drain the infection, but after a few days he began spiking a fever and we were sent to Riley Children's hospital. After a week, my baby was finally diagnosed with bacterial meningitis. The theory, though no one really knows, is that his bowel perforated slighlty at birth and leaked bacteria into his scrotum. His bowel sealed itself off leaving a sac of bacterial puss in his scrotal sac, but when the urologist cut into the scrotum he unwittingly spread the e.coli into the bloodstream and then, because doctors were understandably looking at the wrong things (bowl issues, structural deformities), by the time infectious disease team was called in to do a spinal, the bacteris had spread into the spinal fluid.

At the hairiest of moments, the infection was causing a small legion in his brain. Neurologists told me that if the infceted part of the brain did not begin to resolve quickly they would have to cut a hole in his skull to drain the fluid and pressure. Thankfully, Gentimycin and Vancomycin worked like charms and we were able to forego any neurosurgery.

After we retunred home, my mother and a perdiatric neurologist friend of hers hounded me over and over to get a battery of tests done to assess if there was any permanent brain damage done to my son so we would know what we were facing.

I declined. Over and over. My reasoning: I didn't want him to have a crutch. I figured that if I never knew any different I would assume that he was a normal boy and would never try to compensate for some delay or problem. Much the same way I dealt with CF.

Now, at 31, and raising my second child with some small amount of experience, I see the gaping problem with my decision. Much in the same way I wonder "what if" with CF, I look at my son.

He struggles with writing, with attnetion, with language (all related to the left occipital lobe where his infection was). He gets in trouble at home and at school for not listening. SOmetimes he seems like such an unhappy boy. So I sit and wonder with the guilt only known by other moms if I did him wrong by not finding out what his limitations might be. What if I might have known he'd have trouble with language and had worked with him since infancy? Where might he be now? Maybe not suffering to write a short story in the third gtrade or constantly barraged with, "You just don't listen!"

I can see how denial benefitted me, but I'm beginning ot think that it just is not the right way to live life. I still like to turn a blind eye to my problems, and it is a trait very much passed down by my mother's side of the family.

My son, a beautiful and sad little soul, reminds me so much of myself. It breask my heart that I might have done more damage than good.

When my son was sick my mother asked the doctors if he was going to live. (I mean, she actually said, "Doctor, is he going to live?"). I was so angry with her. Why question that sort of thing? Of course he was going to live! I never had a doubt in my mind. Perhaps the denial of realizing just how sick he was is what got me through those dark weeks. I think even if the doctors had said no, he would not life, I would not have believed them. Not any more than I believed the CF docs who told me (and my mom, when she asked them the same question she'd inquired about my son)I might only live to see 18.

It's a fine line, this denial. I'm not sure it is always the wrong choice, though certainly the one that leaves the most uncertainty in its quake.