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.

Here’s what no one talks about or want to hear about and I’m positive that this goes to all the families and especially individuals that have lived with tragic events and come out of it. That original child(s) is now a ghost that lives with you every second, every minute and every hour of everyday. Our family lives with her ghost(s), the independent 3 year old that used to jump in every puddle that she saw (she can’t do that anymore), the 3 year that use to insist on pushing the grocery cart/stroller/wagon even if she couldn’t see over the handle. Bumping into people and whatever else was in the way. Testing our patience to it’s very limit. Yes, we realize that our child would’ve eventually outgrown this but we mourn that she never got a chance to be her original self. Trust me, if you’ve been through this or have lost a child, you get this. Childhood is so brief especially in this new society where everyone and everything moves so much faster. We lost her original self that first time and we got a new child that we got to know and continued to love just as much but we lost her once more.

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.

The Beginning 2009