I partially wrote this to remember how tough some things were/are. I partially wrote it so others might ‘get it’, knowing some never will. It’s a slightly different view on my ‘I see you friend‘ and ‘pre-admission tradition‘ posts.
There’s a lot that can be inferred or assumed by a nice photo, forced smile or positive post, but there’s also a lot that people don’t see or feel. This post may be a little dark (which is not a place we usually are), but it’s the reality of some of my thoughts and days.
You’ll never really know…
- The actual risk of infection. Seeing kids who have been isolated in hospital for months, taken to ICU and passed away becomes a real threat.
- What it’s like to choose quality over quantity of life for your child
- How hard it is to have faith in God when the medical stats say different
- How emotionally full and tired we get that…
- Your capacity to deal with others is zero
- holding a conversation is difficult
- the presence of someone else is irritating
- The right words to describe things just don’t come out
- You don’t have empathy for what others are going through because it seems like ‘less’ of a burden than what we’re dealing with
- Feedback is taken as a personal attack
- That any routine I can grasp is a safe place
- How hard it is to take your child to hospital to make her sicker than you’ve ever experienced, because you know it will make her better in the long run
- How important is is to wash your hands
- What diarrhoea really is until you’ve dealt with the stomach lining and gastrointestinal tract being purged from chemo
- To be on edge…
- EVERY time your child coughs, to be on guard, because that’s how vomit starts
- EVERY time someone near your child coughs, to be on guard, because that’s how viruses and infections start.
- every night, ready to get up and calm her from bad dreams then sleep on her floor
- How much we enjoy silence and or own space
- How to juggle the emotions of the other kids, how much it hurts to not have enough time to make them emotionally resilient
- What is like to find activities out of the sun because your child has super sensitive skin
- What is like not to have a swim because your child has a central line
- What it’s like to wrap up your child in plastic for every bath so their central line doesn’t get wet
Waves in my ocean seem like tsunami to others and a drip to some. Perspective and empathy for others is also something I ponder, I may never know:
- What others go through, children with lifelong or more debilitating illness
- What it would be like if we were regional and had to travel long distances to hospital
- What is like for a grandparent to see a grandchild suffer and your child to deal with it
- What being referred to paediatric palliative care would be like