Tuesday, July 12, 2011
A Little Slice of Reality
I know you'll be tempted to scroll down and get an explanation for this chart done by Cayden. I urge you to ignore such temptations and pause for a moment to think of what on earth was this little six-year old thinking.
Have you made your guess yet?
If not, consider it now.
I've said it time and time before but it's quite impossible to think of a world outside of CF. For our family living with CF is like eating, breathing, sleeping. It's categorized in survival of the fittest mode.
But it's also an unsaid thing. We don't "talk" about it per say. We just do.
As I scurry to put meals on the table, I distribute pills to 3 children. We run out the door with syringes of daily meds. I rise to pouring Ensure and Pediasure in sippy cups. And at the end of our day just as routine as brushing our teeth and saying our bed time prayers we sit in the living room as a family and watch a movie at the loudest volume. Sometimes we don't hear the phone ring. We are doing nebs and therapy.
Are you still wondering if I'll ever cut to the chase already and get on with the picture? Almost there...
My point is that we don't live in a fantasy land where CF does not exist. It is quite the opposite. We could wake up and say to our selves, "Self, why do we do ALL this. It's not like our kids aren't 'healthy'?" For one, we know that is a ridiculous question. And two, they are healthy...because of hours of treatments and pills before eating.
For me, this picture was a little slice of reality. That in the hustle and bustle of daily living our children still notice the tiny nuances CF has created.
Cayden pointed out to me the first number next to each person is their age.
The second number-how many enzymes they take.
My favorite part of the diagram? That Colin is included. He is no different although in reality he is very different from the rest of his siblings. Cayden sees him as an equal, and although they all realize and understand that Colin does not have CF, he sill is a person. And that is how they are growing up. They are no different than the rest. They my have CF, but it's not who they are. It is a blessing to be the mom of such beautiful, caring children. And sometimes we escape our reality and go about our "daily business" without a cough or ill symptom in sight. Other times we are shaken awake to harsh sounds of wet coughs and crys for help in the bathroom for comfort that it's ok. CF has changed them, yes, but we control how they live with it!