Relaxing vs Escaping

Its harder to relax now. Its harder to find distraction in those activities that others who care for me suggest to relax. James suggested the other day to do some watercolour, which I just screwed my nose up at.

I have found I don’t want to relax. Going out for coffee by myself or doing the shopping or activities that use to be a distraction, are no longer. I still end up thinking about all that is going on, as they are somehow related to the needs of Abbey’s care or the family.

Now I find I need to escape. Where the brain is completely overwhelmed with the present moment. The current mental needs for Abbey are overwhelming, as it is to be expected. There is no guide book on how to mentally navigate this new journey, Im completely lost and can only go by my physical reactions. The physical tends to dominate with clumsiness, butterflies in the tummy, feeling nauseous and the sweats.

I have tried relaxing, as it is so often suggested to me. But if the activity is not all encompassing of mind and body, then Im not relaxing, its just a distraction for a moment in time.

Now Im looking to escape, so that my mind and body can let go for a period of time. Now I escape by:
– reading and upping the speed on the walker (Stephen King and level 5.5, aiming for 6).
– reading a book that is mentally stimulating in moments of peace (Outlander series by Diana Gabaldon).
– listening to business podcasts related to what I need to learn.
– engaging in new activities with the business that require me to be outside my box of safety (dressing up like a unicorn).
– redesigning the vege patch into a flower garden.

Its hard being creative when I am stuck at home. Im going to look a bit more into meditation before sleeping to settle the mind.

Relaxation tends to happen more with James at the moment, as he is the only person who is experiencing the same as me. We can relax in a moment together and if the brain does jump to the situation currently occurring, we can share and move on.

Its a strange place to be at.

Photo: I cannot bring myself to photography Abbey or myself these few days as the seizures are a little intense. Here is my artistic interpretation of my relationship with Abbey.

A Last Step

There are many last steps on the palliative care journey. Today we finalised the resuscitation plan. Our end of life wishes for Abbey are now formal. This paperwork will be distributed around the key people, places and departments. We are hoping this is a smooth process moving forward.

And yes, it’s a heavy emotional burden. It takes time to process and feel comfortable with.

Today there were many chats and changes regarding Abbey’s medical needs. New medications for pain relief, stomach investigations and seizure management. We will continue on with the Marijuana oil trials as it’s still more positive and her quality of life is higher.

Life continues on. We continue to strive for our family motto of fun, dignity and compassion.

Finally needed the palliative care line

Finally rang the phone number for the palliative care team at the hospital to know if I’m doing the right thing by Abbey. Her airways are becoming restricted while having a seizure, a new development for her. As my gut advised, but my mummy heart did not believe, the palliative care team confirmed that there is nothing we can do with this new development. We watch and keep her safe.

Strange to say, that is comforting. It’s bloody awful, but I know there is nothing more I can do for for seizure control/reduction. I can now only prepare for the worst. It’s making all decision making very clear.

We know what is best.

Every special needs parent knows their child the best. Of course.

But most of us are travelling this journey blind.

We don’t always know what is the best strategy for our child, which therapy to give priority to or even, what to expect tomorrow. We can only choose what gives the most desirable results and be ready to change course suddenly.

What we do know is our child’s signs, symptoms or behaviours. And they can be deceptive to those who don’t know our child or their condition. A lot of the time, we are the only ones who know. And telling someone else, who could be family, friends, medical personal or carers, can take some convincing.

This is Abbey in a deep, peaceful slumber. There is no seizure activity that is presenting. But… this is the precursor to a big seizure. People would not believe us until that seizure arrived. Tonight it came 3 hours later and was a doozy.