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When I Find Reminders of My Child's Illness Hidden Among Everyday Belongings

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While I’ve been home and getting stuck into some housework I have been coming across many things hidden away and forgotten about from my daughter Bella’s infant years as well from her most recent — from the frequent trips to the hospital week after week, month after month throughout the years.

Hospital ID bands from years ago shoved in drawers and forgotten about.

A family photo here or there, but typically they were taken in the hospital while Bella was struggling with seizures or complications again.

Old doctors’ letters that I had forgotten to file shoved into boxes on the book shelf.

I even came across a little plastic box which proved to be a treasure trove of memories.

If I’m being honest, unfortunately there were many sad ones, but there were a few beautiful gems amongst these memories, too.

All found hidden on the top shelf inside the linen cupboard.

A box a full of memories of my beautiful girls, but tainted by the reminders of countless seizure clusters, emergency status seizures and memories of times that my pink baby turned a deathly shade of blue.

Memories of each particular hospital admission that occurred during or around the time the photo was taken.

Along with it, all the torment that comes flooding back with each medical emergency or hospital drama. All hidden amongst each seemly innocent photograph.

Such is the typical life and home of a family with a complex, medically fragile child who struggles with a serious chronic illness.

Such is the typical life of a child with profound drug-resistant epilepsy.

In the desk I found lists of drugs and the horrific side effects induced upon my child. Medications doctors forced upon my child, aggressive treatments and tireless drug regimens, all tried and failed in a weak attempt to try to stop the seizures, to be seen to be doing something rather then nothing — yet none of this helped. Notebooks with lists of drugs that made my daughter worse or simply  didn’t do anything at all.

Little reminders of how different our lives are.

All hidden amongst the seemly normal, everyday stuff.

A parallel to our family life, really.

Chronic illness and the medically fragile side seemingly slip into life as if it were the norm.

Yet it’s not normal at all.

We adapt and add the everyday stuff around it all.

This is a reminder of how people suffer more than anyone realizes, yet still try to get on with life the best they can.

Misleading and misguided “outsiders” often do not realize how serious, exhausting, painful and dangerous chronic illnesses and “invisible” illnesses truly are.

Not realizing how much a person suffers, often in silence with no end in sight.

How someone can have some kind of ticking time bomb inside their head yet look “well” on the outside.

Our bookshelf is full of cookbooks, with a seizure management plan and emergency first aid book squeezed somewhere in between some gardening books and a novel or two.

Yet another example of how typical this is for us but not for everyone else.

Such is the reality of invisible illnesses: You may never have known they were there unless you dug that little bit deeper.

Yet at the same time, to those less ignorant or more understanding, they are not just there, they are glaringly obvious.

Image via contributor

Originally published: April 18, 2016
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