Sunday, September 12
The Night of "Clinic Dread"
Let's face it it- It's not just about going to another doctor's appointment for your child, it's about the realization every time you walk through the clinic doors to see a nutritionist, a respiratory tech, a pulmonologist , the head nurse, and of course the social worker....that your daughter needs these people. The reason you have a team of medical experts around you is only because your child has a life threatening/terminal illness. It's that kind of slap in the face. Those hospital walls reminds you that "your routine" of doing 3 nebulizers a day with your daugher, giving her 18 pills to swallow, 2mls of vitamins, 60 minutes of physical therapy is not really so routine for most. Because really that kind of "routine" has become so common place now since you do it everyday all day with no deviations. It's the rush of emotion that hits you when you are staring at the social worker as she rushes in to see if you want to "chat" after every CF clinic day because really she is there to provide you with "support". I mean it's that kind of emotional support that really makes her addition to the medical team necessary.
Suddenly the walls of the clinic exam room seem to close in on you. I find myself staring at Madeline looking at her differently in those germ ridden rooms. I find myself thinking about what kind of short or long life she may live.... when really I don't think about any of this in the "routine" of my crazy day at home with her.
The hospital is just full of ways to remind you over and over and over and over again throughout clinic that your daughter may die anyday and really....there is no cure....and really you just have to keep worrying about keeping her healthy, helping her gain weight, and pray that someone is on your side to keep her in this world as long as possible.
This my folks, is the reason that I have Clinic Dread...and I will forever have it until...someday, just someday we might find a cure and I can go on dreaming like most parents get to about their daughter's first prom, first boyfriend, their daughter getting married, and even having children....
I dream that one day I get to be like most parents and I get to live these moments with Madeline.
Until then, let's hope for a great clinic day tomorrow....keep us all in your thoughts.