Sunday, July 29, 2007

The Real Surreal Life

Sometimes our lives are so surreal. The day goes by -- treatments, meds, vitamins, we pound her chest, we watch closely --every poop, sneeze and cough, and worry about her digestion and breathing, sick people around her, traveling, the germs at the park and on the grocery carts, on doors, the sidewalk, we watch and wait, we live CF everyday. And yet even with all of the therapy and meds, fundraising and research, I forget. I forget that this disease is real. That as of 2007, it is still chronic and fatal.

The reality of Cystic Fibrosis comes over me like a wave, like a labor pain. It is all consuming, and I can't breathe, or think about anything else. And it's always a surprise, like when someone passes away and you wake up remembering that they are gone. This disease lives just beneath the surface of our lives, poking out of a smile, or storytime, the simplest things. All of a sudden, I'm paralyzed with the reality that this is our life, this is really our life --these were the cards we were dealt, and there's nothing I can do about it.

It usually hits me at the end of the day, when everyone has gone to bed. Like right now. Saturday Night Live is almost over, and for some reason, I'm really feeling it. It's kind of like loneliness, that can't be healed with human company.

I know Froggy will survive this. Not just because I want her to, or because the research is making such progress, but because I feel it in my gut. But I also know that her life will not be easy. I know that everyday will be filled with hours of maintenance and pills, nebulizers and doctor's visits. Even the best case scenario is a tough road. And when I look at her while we do treatment, and as she watches "Make Way For Noddy" or "Dragon Tales," she is so content with the routine of CF. Her treatments are a part of her daily life, that she never questions. It's like eating breakfast or taking the dog for a walk, just something we do. But one day the idea of CF will come over her like a wave, wake her up, and become very real. She'll wonder why she has to spend two or three hours every day breathing through a nebulizer, why other kids don't take pills and supplements, why her crazy parents are always forcing her to eat. One day it won't feel natural or routine.

I can only hope that before that day comes, there will be a cure. In my heart, I feel that the cure will come in the form of more treatments. Maybe there is no magic pill, or shot, that completely solves everything. But as a mom, I will take anything that adds days, weeks and years to her life, our beautiful, wonderful and real surreal life.

3 comments:

DutchMac said...

Hugs, cuddles, warm fuzzies, positive affirmations, symbolic shoulders to cry on, bottles of wine to drown in, retail therapy outings to forget yourself in, smiles to share when things go beautifully well....they're all being sent your way.

xoxoxoxoxo

Anonymous said...

you write your emotions so beautifully. thank you for sharing them here. hugs!!!!!!!!!! jcn

Casey said...

Wow. This really hit me. As I've said before, I think parents with chronically ill children are heroes and withstand more in their lives than I can ever imagine. Hug that baby of yours for me...and give yourself one, too.