(Rilynns cousins helping do vitals)

Tonight as I was scrolling thru Facebook I stubbled upon a blog post written by a new mom and I clicked to see what it was all about. Her writing was captivating and I kept scrolling to hear her openly confess to the anxiety nobody told her about when having a child. I felt tears whelping up in my eyes and I had to stop reading. I longed for those issues to be what kept me up at night, I wished my baby could have cluster breast fed all night long instead of being tube fed. I felt sorry for myself as I got up and scooped Rilynn up to get her vitals done before I had to hook her up for diaylsis. She had been asleep but like every other night I had to tip toe her onto the scale and get her weight which never fails to have her wide eyed once I set her on it. She smiled and I clicked the scale off after reading 19.05.6. She is less than 3 pounds away from the minimum requirement to get a kidney transplant. We headed into our room and tried multiple times to get her blood pressure. The machine never catches it. She is such a trooper, this girl will be so patient as that cuff squeezes her so tightly that it often times pops right off her arm. 91/53. I smile knowing that’s a perfect blood pressure and diaylsis is set up to match. I think back to that blog and I think about my responsibilities, I literally have to decide how much fluid to take off my child. I have to be her kidneys. I have to do it right. Based on Rilynn’s blood pressure and how she looks (puffy, sunken in..ect) we have to choose which diaylsis strength to use. After 6 months of this I often times don’t think twice about it. I know Rilynn to a T. Better than myself. If something is off, I know it. I then changed her diaper and put on pajamas. As I put on my mask and gloves to connect her I hear what sounds like a big blow out. We both smile and I laugh thinking at least I have this mask on. In that moment I realize I am the lucky one. Before Rilynn I had always been anxious and paranoid about most things in life and God has helped me overcome that. Yes I worry still but guys, we have a baby that completely depends on us to keep her alive, not just feed her and make sure she sleeps but we have to know numbers and medications. I sleep at night (til 9am: one perk for me of this disease!), we laugh and smile more than most families do, Rilynn doesn’t even know she doesn’t have kidneys. God gave me Rilynn because he knew I was strong enough to handle it. I often times pleaded with God on why we had to go through this, what if this horrible disease happened to this mom’s child who wrote that blog completely overwhelmed by normal everyday life with a newborn? I am lucky enough to have the strength to not be anxious, I shouldn’t feel bad as I read through that blog. I should be very very proud and tonight that is what I am.