We will make the hour and a half drive to John Hopkins in Baltimore tomorrow afternoon. Here's hoping for continued weight gain and good plotted points on that stupid CDC growth chart that shows her BMI/ weight ratios.
I know it isn't the actual clinic (Hopkins) making me feel this way...more of the disease..but I always feel as though I am getting my "parent report card" on clinic days. I mean they calculate how much she gained per day and whether she is correctly following her growth curve. Is she above the 50th percentile? What is her feeding schedule daily? Is she a good eater? Have you tried ______ or ______ to help? Is she coughing?
It always does feel like it a reflection of ourparenting skills but, we all know that isn't true. The truth is hardly that. This disease can beat you up. It's the feeling as a mom and a parent that even the best you try to do can still never be enough. Because really this disease is always there. Your child still gets sick...even though you washed their hands,and your hands religiously. You offered them every food in the book, bribed them, entertained them...just to get them to eat small crumbs...and sometimes that just isn't enough.
It's that even when small things are going right...there is always part of the disease that is bringing you down. Clinic day is often a reminder of that. Just being at clinic is a reminder to you that your child has a life threatening illness that you often forget. You forget because your "scheduled routines" of nebulizer after feedings, after meds, and then repeat all of that....has become the "norm" for you. You do this every day that it becomes your life. You walk into clinic and have the doctor listen to your child's lungs...and your heart almost skips a beat during those few seconds. You wonder if this will be the daythat the doctor tells you those lungs don't sound too good...
And then the roller coaster will start...
Clinic. Even with positive news it is a reminder of what our children deal with every day. It's the reminder that we, as moms cannot take this disease away our children. The only thing we can do is be the best mom /parent and advocate for our children.
And this folks, is what we CF mom's and dad's do....we wake up everyday fighting for our children.
This is the best we can do.
Fingers crossed for a good report tomorrow...even mixed with the no-so-good emotions that clinic brings.