Resilience

t’s the development of the resilience muscle that gets any special needs parent through the never ending hurdles. When we think we cannot take anymore, we learn a new strategy to cope. We become exquisite at knowing when the resilience muscle is loosing strength and flexibility. Most times we are so caught up in it all, we miss the signs and at other times so much is thrown at us that we just hope it does not snap.

Right now, I know my resilience muscle is close to snapping. Too much has been thrown at us to deal with it all at our best. From Abbey still recovering but getting better to James coming down suddenly with the flu, camp preparation for Dan and a work expo for the business all this week … I’m just shaking my head.

So we are aiming for making the best of it all. Putting into place contingency plans in case Abbey goes downhill, others become sick and ensuring our plans made months ago will come to some sort of fruition for the family and business.

I’m working on getting some strength and flex back into my resilience muscle.

Adapting

Activities I dislike doing, but need too when I know a big seizure is coming:

Showering
Brushing teeth
Sleeping
Checking the mail
Being on the phone
Gardening
Cooking

Why?

Because I cannot hear her, cannot get to her fast enough or it can be dangerous (I managed to melt a microwaveable vege steamer a few weeks ago).

Sometimes I’ll brush my teeth in her room.
Sometimes I won’t answer the phone.
A lot of the time my garden dies from lack of attention.
Sometimes I hand bathe so I can hear her.

Adapting is key.

Stress

I place a priority on caring for myself to ensure I’m able to function physically and mentally with everything that is going on. To be honest, it is effing hard at the moment. I use all of the strategies suggested by the professionals: eat well, exercise more than I ever have, find moments to relax and switch off, but it turns out my body is struggling.

A trip to the doc for the annual skin check, brought up the funny little rash I have been experiencing for a few months. I have gone through the list of things to manage it (eg changing shampoos, wash, detergents etc) and nothing helped. It’s a bit irritating to be itchy, it looks like I’m diseased.

Turns out I am not diseased. It’s a stress rash. Never had one in all of my life.

This leaves me a little perplexed, because how do I reduce the stress levels? How do I make changes to all the things that NEED doing for it to be less stressful? Where do I turn when I don’t know what is causing the additional stress? Is it stress or unspoken emotional burden?

Don’t worry, please. I’m mentally fabulous. But it’s weird when you think you are on top of it all, your body lets you know otherwise. I’m going to listen to my body, discover the hiding stressor and flick them to the curb!

(How can I not share another photo of my girl? Im so proud of her for what she achieved this day. This is the equivalent to one of my boys earning a challenging Scout Badge!)

Space woman

Sometimes being a little crazy is the only way to handle the world of CDKL5 with Abbey.

Dressing up as a space woman to promote a new print for my small business pulls me away from the counting of seizures, BMs and potential vomits. It puts the brain in a completely different situation and induces a great giggle.

Your welcome to watch my antics here Apikali-Cloth Nappy Doctor. Im also growing this biz for the special needs sector, and it feels wonderful. Abigail is a model and product tester often.

Show me your crazy!

Wheelchair Chariot

The Wheelchair Chariot car has 2 flat tyres and needs all tyres replaced. Abbey has the opportunity to claim the front seat of the other car, much to her brothers disgust. Unfortunately Abbey is unable to sit for long in car seats, even with a harness, as she can squirm out. Plus it is not easy getting her into such a seat. It only short, much-needed trips that we will use this transport.

Now it’s a Mad dash to organise a tow, new tyres and getting the car home again.

Going off the path

Taking a slight turn off the path you follow as a carer on a daily basis can have dire consequences for you or the person you can for. Routines, patterns and methods are our building blocks and eventually supports to taking care of our loved one and hopefully ourselves.

But it can be suffocating. Stifling our own growth and hurting our confidence.

The routines I follow for Abbey are rigid. They have to be to keep her alive. There is not a lot of room to make changes to suit me, but I need to be adaptable as her situation changes.

There are times I feel myself getting stuck. Bored even. When exciting situations present, the default is, I can’t. There is no because, I just can’t. Most of the time I’m correct, there is no bloody way I can.

However when I’m not physically with Abbey, my brain still sits in the I Can’t bucket.

Today Nate and I visited the Bonorong Wildlife Sanctuary and had a personal tour from Bob. We fully recommend the experience!

On leaving I asked Bob about a short, quick hike, he looked like a fit, adventurous type. Mount Wellington was offered as a suggestion.

I typed it into the GPS and it advised an hour drive. Nate was tired and wanted to go back to the room to watch a movie. Boring, but easier. My default.

My brain and I fought with each other. I won and we went to Mount Wellington. If I had let my default position win, I would not have seen and touched snow for the first time in my life, or built a snowman, or seen the top of a rainbow.

Small turns off your default path. No matter how small, it’s worth it to find another journey that has not been taken before.

Professional Help

It is vital to pursue the help you need. To fight those voices saying ‘you can do it – should be able to do it – by yourself’, or that ‘what you currently have is enough’.

I see a psychologist who helps me understand what is ‘normal’ in a very abnormal situation. I have been concerned that my sadness is leading me down a path of depression, but after today’s appointment, it turns out I’m normal.

Those closest to me cannot tell me if my reactions are normal. My husband knows me the best, but even he cannot be 100% certain that my reactions are healthy.

Reaching out for professional help is vital when you don’t know, or when you are not moving forward, or when life feels like it is too much.

Mental health is too important to try to manage alone. I’ll be back in 3 months for a check in.

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.

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.

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.