Just Another Not Normal Normal Day

It looks as if my baby boy may finally be resting again. He woke at 0200 asking for his curtains to be opened so he could see. He thought it was time to wake up. He was really agitated; fixated on finding a tiny lil dry erase eraser he had played with yesterday. I finally gave him something to calm him. I am thankful that these type of nights are far fewer than they use to be. Up until about a year and a half ago he NEVER slept thru the night and could not be calmed to a point where I could sleep. It was so emotionally and physically difficult for he and I. Sometimes when he starts waking I begin to worry that he’s fighting another infection, or chronic pain from his brain deformity or scoliosis or if his shunt isn’t working correctly or his brain is becoming compressed and it’s difficult for his body to regulate his breathing and that wakes him. The biggest fear I have is putting him to bed and him not waking up. The possibility is always present. If he doesn’t wake by a certain time I always take a deep breath, pray before I walk into his room fearing he has left me. As he grows into puberty and sleeps later it’s going to give me gray hair. I don’t show emotion outwardly and to many I can appear stoic and emotionally aloof. The truth is I carry so much inside, I have emotionally rehearsed worst case scenario over and over to the point that I have numbed reactions. I’m so grateful for his good days. His smile, hugs and laugh warm me in a way only those who genuinely know Anthony can comprehend. He’s a normal lil boy trapped in a body that fights him every minute of everyday. He HEARS you, SEES you UNDERSTANDS you and has to FIGHT to respond yet he is happy! How can any of us ever say life sucks for us when our WORST day is a piece of cake compared to any of his days? He struggles daily yet he does it laughing and loving with a spunk I cannot explain but wish I could bottle and sale. Prayers, love and hugs to ALL of my special need caregivers. Kindred souls. Our special babies genuinely shape us. Mine grew me into a person I never think I would have known if he hadn’t been gifted to me. He is not a burden nor hindrance; he is a gift from God. A gift some will never understand and that’s ok. 😘 For us, it is just another not normal normal day.


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