Super ladies

Secretaries, office managers, admin assistants or beautiful people, they can make or break the day of a carer. When we started the palliative journey for Abbey, it was very emotional and unknown. These beautiful ladies are the gate keepers to our Paed. They always greet us like we are their lost family returning home. They never complain, always smile and it puts us in a positive place before we see the doctors.

When you come out of the doctors appointment with sad news, they seem to know and have tissues or an empathetic bedside manner that leaves us feeling content and able to meet the challenges.

What a super power they have!

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.

Clearing time to Clear the mind.

CDKL5 is continuing to challenge my time as I medically care for Abbey. From seizures to hair thinning to skin integrity maintenance to managing the admin and therapists/doctors to just having fun, it is doing my head in. Every day what I think is or should be normal ‘sky rockets out the window’. When I think I have a grip on our new ‘normal’, it shifts again.

So the past few days have seen us say yes to new things and no to old thoughts. Coming to accept a new normal as often as we are, is challenging in itself.

And by a new normal, I mean a new routine, a new rythmn and new worries. It’s changing very fast.

Goodbye to stressing about getting housework done.
Goodbye to feeling guilty for not calling family or friends.
Goodbye to decisions in my business that don’t empower or help me thrive.

Hello to, Wally, our new robotic vacuum cleaner.
Hello to asking for assistance and giving little gifts.
Hello to socialising with empowering women.
Hello to cocktails nights.

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.

Make a Wish Foundation

Today Make-A-Wish® Australia – Brisbane South Branch came out today to chat about what Abbey’s wish may be. She was recently granted a Wish and it’s overwhelming to think an opportunity for our girl may come about.

The volunteers were so beautiful, compassionate and understanding. Trying to discover a Wish for Abbey, who is non-communicative and developmentally 9 months, is no easy task.

The Wish Volunteers took away what Abbey could enjoy, and it became clear her Wish should revolve around water.

A huge light was shining today.

Photos: Abbey learning sight words with Ali, being taught by Dan. During the lesson Ali held her hand while he learnt his sight words.