My Greatest Fear Travelling to America

There are less than 10 sleeps until I travel to the USA. I’m preparing for the journey, asking for advice on travelling alone and ensuring that my home and family will be ok without me for an extended period of time. Of course some fears and anxieties are starting to come up as I get closer to the departure day. The normal anxieties of getting lost or missing flights crop up, but they are easy to rationalise and prepare for. Then there are the stupid irrational fears of travelling to the USA, like will I get shot or mugged or even murdered while there. I know, stupid right! Thats from watching too much Law and Order: SVU (I still have not seen the latest seasons, maybe I should not catch up before I go.)

It was chatting to Abbeys carer that my greatest fear reared its ugly head. We were chatting about who I talk to about all I experience with Abbey and being her carer. That was easy to answer, I talk honestly with my husband and my mum. And I share what I feel comfortable being vulnerable about on the Facebook Page, 365CareAbbey. Abbeys carer thought that was a little narrow, didn’t I have girlfriends to chat too? People who understood and who I could share it all with?

Honestly I do, but I dont need to share everything with them. I have girlfriends I have known for over 20 years and have been by my side the entire time I have been Abbeys carer. I am visiting such a friend when I travel to New York. Do I want to go and share all the crappy stuff that is going on right now? No, not at all. I know she would sit with me as I crumble into a heap, but it would not be helpful.

This also applies to girlfriends who I meet regularly for coffee, but who are also mothers of severely disabled children. I recently had a cuppa with them and shared the dreaded word palliative. What was in my heart and head was mirrored on their faces and in their eyes. There was no need for me to crumble in despair, they shot out that support web of emotion, strength and dignity, that I could continue on.

For me, having conversations about the despair and loneliness I feel at times with my girlfriends is not productive for me emotionally or in being the best carer I can. Its because every single conversation we have would be about this. I rather enjoy saying, “its crap but this great thing happened…”.

Back to my greatest fear.

Chatting and sharing is important for emotional and mental well-being. But a lot I cannot share or wont as its just too crappy, so I keep busy instead. Its easy to keep busy being Abbeys carer. Even now, when I return from the USA, there are 4 important doctor appointments and hospital admissions within the first 2 weeks of returning home. Its busy every single day, either in caring, administration or being a mum, wife or business owner, things I must do. And in being so busy, I dont need to think about all of the crappy stuff, as its happening most of the time. When I travel to the USA, I wont be busy so my head will be empty of all of those ‘must-do’ things associated with being a carer, mum or wife. My greatest fear is what is my mind is going to throw at me while I travel. I cant hide behind or divert my mind to a most pressing task. There is nothing I need to do in the USA, besides turn up where I am expected.

Why am I scared? I dont know how to handle such a flood of feeling, if it rears itself. I dont know how to be that vulnerable, even to myself. What will be exposed? What will I discover about myself? Can I control it? Will I like it? Even now there is a lump in my throat at the thought.

Im off to America with the primary purpose to experience joy. But to fully experience joy, I need to be vulnerable. I need to be open to the unexpected, unplanned and all that is out of my control. I need to be in the moment and fully take in what is happening and allow myself to actually think. As I write this Im exhilarated by the opportunity, as in my day-to-day I must suppress the emotions to be able to continue on. Its a conundrum I am experiencing.

It would be a lot easier not to go. Easier in so many ways, especially in not needing to confront myself. But Im going. I will be running out the door and onto the plane. Im committed to doing this and discovering all the possibilities that will come from it.


Carer to Abbey

Palliative: the word we dont want to hear.


Its a word that has always been in the background and followed us around from day one. Its a word that we wish not to hear.


The word popped up at a Paediatrician appointment last week for Abbey. Her doctors have started talking about the process.

Abbeys doctors’ want to start the paperwork for palliative care. Abbey is not terminal. It just does not make sense, but we know her life will be shorter. Her doctors know this. We know this.

We won’t look into the future often. We know it will change dramatically one day. I dont want to start the process.

But… we must.

For a week I’ve been going through another kind of grief. A sadness that this step makes it official that my girl won’t be with me forever. That I will outlive her. Paperwork always makes things official. I like thinking I can spend all my time curled up in bed with her cuddling.

Why palliative care?

Abbey is eligible for this service as her life is shorter and its provided for children who will not make it to adulthood.

Starting this process will help in the following ways:
– as Abbey gets older, there is less chance that we will loose services from the child to the adult sector at 16 years. Its just another foothold in the bureaucratic system that is disability services.
– if she does pass away at home, then it will mean the police will not need to be involved, making this event a bit easier on all concerned.
– we can hook into counselling and services that can assist us with this transition.

This has brought into perspective where we are heading next with our girl. It all makes sense, but honestly, if feels icky and makes me sad.

Talking about it does not help. Writing about it does not help. I dont think I want to get use to this next stage.

All we can do, is carry on. Life carries on. Abbey needs cuddles and love. This we can provide in abundance.