Finally, Rocco is asleep and I’m done crying. I honestly do not know how you caregivers do it sometimes, and I reached my breaking point today.
The meaning of Caregiver to us patients has always been who’s provided for us from the beginning. Who comes with us to appointments, drives us home after surgeries, and who is at our side when this disease shows its ugly side through our challenging bodies. I never thought much about how my Dad has felt towards me, and after being a caregiver to Rocco Ricardo through a very rough almost six months, I’m losing it. Rocco came to me shortly after being diagnosed, and was in a way a caregiver to me. He was the consistent lovable force through very ugly times, and looked to me as his “mom” for just as much love and support as he was showing me. From day one he has always been my baby, and this is truly one of those cases where he, in turn, rescued me. When his episodes started happening I really hoped for a change. I’ve prayed, shoved pills down his throat, liquids, diet changes, and we see his doctor more than I see mine in a year. I really felt that miraculously he would improve, and that the good phases he goes through would get longer, and eventually his episodes would just stop. After all, he is only three years old? Why is my eighteen year old cat still climbing his bony self up tree’s and my three-year old is in the house sleeping all day? It’s not fair. Not at all. Rocco’s bad month has extended into almost six months. His doctor said that his lungs are looking worse, he sounds worse, and dad and I are taking different shifts when it comes to administering treatments to keep him breathing. I cried today because I’m exhausted. Hooking tubes up, paying for medical bills that don’t seem to help, keeping him somewhat breathing, distracting him, and keeping him happy. I am so damn tired, yet I will still do all of these things even at four in the morning just to see Rocco somewhat breathing good (the best he ever will), sitting upright, walking around, and attempting to be happy maybe one hour a day. Last Friday I watched him aspirate a liquid medication that was supposed to help, and he almost left us. After an hour of treatments and hooking up my oxygen to blow in his face, he finally was breathing in big chunks of air. Today he coughed his lungs up, and treatment after treatment he put his head down, and tried to hide from me while I caught myself yelling at dad asking why he is acting weird, and to figure it out. I watched myself finally realize how terrified I am of death, and that my three-year old is definitely not far from this black hole. I realized that I have never been so scared for him, and that I am losing one of my caregivers. He was there for me when I was on bedrest, experimenting with treatments, and when I cried my eyes out into his black fur through a breakup. Now Its my job to make him as comfortable as possible, and to be his caregiver. I’m exhausted, I’m upset, and I don’t know how the parents of any kid with a disease can do this. I cried today because I am so questionable of death, and am scared to see him in his last moments not acting as himself. Kuddo’s to you caregivers, and what you do for ANYONE, child or adult, that needs assistance. There are not enough words to describe the unknowing and numbing pain you experience as a caregiver, that you were not originally warned of. Thats all I have to say about that.