My Living Child’s Ghost
As an adult, we often take ourselves so seriously that we forget to examine things in our lives that we come across that bothers us. We forget to have real honest, heart breaking conversations with other individuals about our perspectives and our feelings. When people say that we are the lucky ones. We still have our child. She didn’t perish after her repeated occurrence of Acute Necrotising Encephalopathy.
The third time, left even more marks on her. She was now physically disabled, using a walker is extremely hard for her. She can’t even stand. This is the same person that had learned to run in her AFO (braces to assist with her walking). She is a happy child with that same, very determined character, however she can’t keep up with everything her peers do. Her short-term memory is slowed and her fine motor skills have some work to do but she makes it all work. She came back remarkably changed, her emotions are volatile, she’s super sensitive and even more so when she’s tired. She gets frustrated with her fine motor skills and gives up (this is new). She can’t stand independently or even against a wall, her brain/body denies her even those simple tasks. She has to take medicine that robs her of her vision, so she needs reading glasses to enjoying reading books. Her character is younger than her peers and this has changed some of her friendships. Although she is still admired by some of her peers, it’s from afar now. She’s at the age that she remembers and knows what was and what her limitations are now. She’s a real trooper even through frustrated tears when she’s trying to be persistent and is failing miserably. We love her current self and we take full advantage as she may be gone tomorrow.
Don’t get me wrong, this never changed our love for her through every challenge that she faced and conquered or that she is still faced with. We love her just as much but those ghosts still live in our home, with our friends and at our daughter’s side. They are reminders in our everyday life of our past daughters, we’ve learned to constantly live with them. Remember we cannot tell anyone’s battle so just be nice, you don’t need to use words , just be there , listen and have that honest, open conversation with your friends without judgment or recrimination.