My parents always taught me that if you had nothing nice to say, say nothing at all. I was taking that stance the last month because it’s been a messy disaster and I was feeling like such. It seemed like everywhere we turned the numbers were not falling in our favor, and three of our kidney friends were/are in sticky situations. It seemed like trying to live a life was a novelty that we would not be afforded during the winter months, and I began questioning my “can do” attitude.
There is a fear, that never leaves, that you can not protect your child. It makes you start flailing your arms wildly in hopes that you can at least figure out some way to somewhat lessen it…or gain more control.
It’s hard when people don’t understand how fragile these children are, so they are surrounded by other kids and adults with fevers (avoid kidney kids if you have a fever) and runny noses and coughs and siblings who have been exposed on a constant basis. Because they look fine, because they play like your child…they are treated as such. However, for these kidney babes, it’s like putting them in the boxing ring with their hands tied behind their backs. With immune suppression, they suppress their body’s natural reaction to fight off foreign germs. The problem is they don’t know what they are suppressing.
I am happy to say that today, we won a victory that we thought we were losing. It has given me the hope back that was somewhat faltering. It’s hard to be brave, but the truth is that you wake up everyday and decide what kind of day you are gong to have and you can’t take hope away. There is a bright future for our kids, it may be filled with hills and valleys, but eventually you reach the top and see the sun. Gav’s numbers are back to his normal range and the reflux into the kidney is showing some relief (this is huge…HUGE).