Letting a little light in.

You know those days where the rain just continuously drizzles down, and the clouds blot the sun, making the room dark? You turn on a light to allow you to continue working or engaging in a fun activity.

When the palliative care journey started, it was a heavy cloud, dark and foreboding, and very clearly defined. Now it has become harder to verbalise and conceptualise. Days are more like the continuous drizzle and occasional heavier rain patches.

Friends and family are so fabulous and gentle, asking if am I ok? I try to explain that at the moment, I feel long moments of sadness. Sadness that doesn’t know if it wants to be that ugly crying episode we all feel embarrassed about or to let one single tear slide down my cheek or even to go do something totally crazy and random to escape this reality.

I am ‘ok’. I am ‘fine’. I’m functioning, I’m living day to day. Im taking care of myself and my family. I know the signs of depression and work very hard to keep them at bay. But this sadness? This bleakness?

I think it might be part of grieving, yet it’s not something I have felt before. It’s hard watching Abbey with the seizures now, and that is new. It is hard managing all of the other stuff for her care. Everything about her care is ‘more’ than before.

What has changed, that I have noticed in myself, is my inability to connect emotionally with people and their issues outside my immediate family of 6. I find it hard to give back the emotional response that others may expect from me, or have come to expect through years gone by. My response now is extremely practical, very black and white, and possibly interpreted as insincere at times. I don’t mean it to be that way, and I can certainly empathise with their situation as I’m also living the sadness, anger and frustration of life. However I cannot afford to stay in such a headspace, or be taken there by others, if I wish to maintain my own mental and emotional wellbeing.

I’m reminded of a line from an ‘Avengers’ movie where Bruce Banner explains that he doesn’t have to suddenly get angry to turn into the Hulk. “I’m always angry”, he explains with a smirk. I relate to that.

Sadness, anger and frustration are always there, and will continue to be. The best I can do most days is switch on whatever light is within reach to get through my day. That, and do my best to avoid letting the dark cloudy days of others take away the light I need to survive. I can help others move along their journey, but not if I fail in surviving mine.

Soft Landings

Never underestimate the love and support others want to provide, when they feel there is not more they can do for your situation.

Coming to Melbourne was a big step for me this time. I love to travel, but this time it took a bit of arse-kicking to get me out the door. It’s been a long week for palliative care appointments and phone calls besides the normal stuff. There has been a heavy feeling of sadness, that is generalised.

After my free time in Melbourne city chatting to my drunken companions, I went into the church I was loitering outside of and sat in silence. Let the mind run free. Stopped trying to figure it all out. Just be.

For the next two days I stayed with a long time uni friend and my aunt. Both places and families provided a safe place to land. Gentle conversations and too much wine for me, further let my mind rest.

Now I’m heading home to it all again. This has not been an escape, it has been a chance to let the sadness dissipate and be replaced with love, support and ready to tackle it all again.

It’s easy to feel alone in shocking or frustrating situations that just don’t end, but you can also feel lonely. Some of the sadness is the loneliness at facing it by myself in the moments I need too. But always, ALWAYS, I have a soft landing after, in more places than I think!

Heart is very heavy

It has been days of meetings regarding seizure management plans and palliative care. It never feels great to share on these days as the heart is very heavy.

The heart is still heavy, but we have a priority on making it lighter. Working towards a new normal and minimising the influence of the outside world until we can join it again.

Even Abbey is a little over it, stopping half way down the hallway to rest while walking.

Right now I’m forced to stop and relax. near Flinders Street Station in Melbourne on a green patch outside the church, where I keep attracting the alcoholics to share my green space.

Days like this don’t exist.

Some nights when I come to do a #365CareAbbey post, I just shake my head in disbelief, as it’s the sort of post I would read and think ‘sheesh that sucks, I’d hate to be in your shoes’.

Today is one of those days. Actually it’s not even ‘one of those days’ that just drags on or nothing goes right. It’s a day you spend trying to get answers to questions that won’t be answered…..while keeping your cool and coming across intelligent and altogether.

A day spent advocating for my children at both their schools due to a situation that does not fit policies or tick boxes. I’m working through it, but honestly there are too many tears. But my voice, my child’s voice and my family’s voice will be heard. This is what drives me forward.

And as I end the night my girl has a change in the big seizure presentation and our driveway has lost majority of its integrity due to a storm just gone through.

Tomorrow I will assess damage of the driveway as I take Abbey up to meet the bus, check emails and start again.

To all of the parents who had ‘one of those days’ plus a bit more, I salute you.