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

Our first High Tea together.

It took a team of people to make this happen.

I have wanted to go for over a month, but there was too much scheduled for today. Then events were cancelled and it became possible on Thursday last week. I went to book tickets and sales had closed. Bumma.

But the amazing lady who was running the event knows what it is like to live with a special and beautiful girl like Abbey. She got us in the door and a seat at the table.

It took 2 very handsome chaperones to get us to and from our table. It was not very wheelchair friendly, but these amazing men found us a way.

Abbeys carer came too, so we could enjoy the event and I could have assistance when needed.

It was this team who has allowed me to tick one event off my ‘Mummy and Daughter’ list of attending a High Tea with Abbey.

And the best part was supporting this amazing lady’s charity, GiveAbility – children with special needs.

Birthdays, Easter and Special Needs

Every special needs parent knows any special occasion is a game of Russian Roulette. Will we make it to the day? What illness will present? Is my child sensory safe? Plus the hundreds of other questions or concerns that arise. In the end we want to celebrate too, with even more gusto and excitement. Beware if we do make, we will milk every single drop from the occasion.

This weekend is my birthday – April’s Fools Day, Easter and the Easter Bunny comes. Add in that Abbey has not had a big seizure for 5 days, but continued with jerks and vacant seizures. She has also had some tummy upset. What this weekend would present, was a huge question? Here is how we tried to put it together.

Easter bunny was kept simple and the search for eggs was at 5 am this morning. A very efficient bunny.

Easter is about family time for us, plus being my birthday, so a hike was in order. We did it! Between 7 and 9am we walked 6 km on a local track. It’s was classed as a medium level track, but pushing 50kg up and down shale-covered hills nearly killed James. Abbey loves the bumps and wobbles, but did protest at the deep gullys. We know for next time to look for an easy level hike!

And birthdays in our family can last weeks. This year I expressed weeks ago 3 things I’d like to do: build a plant stand, hike, and a lemon meringue pie. Plant stand built by James and boys yesterday and hike today. Lemon meringue pie will come later, we ran out of biscuits and my dear girl had that big seizure last night and today we are up to jerk/vacant seizure number 10. She is also having very uncomfortable belly issues.

Sure we haven’t done as much as normal, it was lower key too. But it’s been a blast!

To Feed Abbey

It Takes 5 departments, 2 parents, 2 carers, 3 teachers and 3 brothers to feed and medicate Abbey.

James suggested sharing what it takes to feed and medicate our girl. As I have thought about how I would show this, it occurred to me it’s a convoluted group of people and departments.

Let’s begin.

Abbey is fed via Mickey Peg in her tummy. This device allows us to keep her fed and medicated. This is where the 5 departments come in.

The Mickey Peg comes from the Gastro Dept once a year.
The connecting feeding tube and syringes come come the Consumables Department every 3 months.
The food and giving sets come from Nutricis every 2 months.
The little straws to enable us to administer medication comes from the Pharmacy Department every month.
And lastly a Dietician to write the food scripts once a school term.

Then we have 7 people who are able to put the puzzle of pieces together so that she can eat.

Dan is learning how. Nate and Ali are learning how to use the pump machine.

If you are confused, then so am I on a monthly basis. Keeping up with it is just silly. But it’s how it is.

The photos just show all the bits. I suggest shaking your head, giggle at the ridiculousness and have a wine for me. It is not possible to piece this together with a few drinks in you.

A bittersweet day

Today we say goodbye to Abbey’s best friend; our carer for Abbey. A very special lady who has empowered our family to be more and do more.

Madi has been with us for 4 years. This may seem a short time but for our family it’s a lifetime. Madi has joined us in the journey for Abbey from great hopes into our palliative care roles.

Madi has been Abbey’s best friend, joining us for weekly movie nights, family dinners and cooking up a storm in the kitchen. She has helped Abbey join in these family events, but most importantly she has allowed us – James, me and the boys – to engage with Abbey as her Mum, Dad or brother, trusting the carer aspects to another.

Madi moves onto bigger and better adventures, and though I personally will miss her presence in my day to day, I have gained a very close friend. Someone who has a very unique perspective on my life. She has seen me cry, get angry, be at a loss for words and be so extremely happy, and supported me through all of it. It will be wonderful not to be her friendly employer anymore, but rather her friend, in full.

Today we lose our carer, but retain a member of our family.

Thank you, Madi. From all of us.

Thankful for the opportunity

I have not expressed how thankful we are to have the opportunity to trial the marijuana oil. After seeing the 730 Report last night on accessing it, I’m even more grateful.

It will continue to amaze me how beauracracy at all levels of government can determine the health care that parents can provide their child.

Every special needs parents is more vulnerable to this. We are less likely to fight because we are already snowed under. If we do choose to fight the beauracracy, it is done so because our child needs it. It will take our already depleted reserves of time, energy and brain spaces.

Sometimes we need someone to stand along side us. Sometimes we need someone to listen and just explain a decision. Most of the time though, we need someone to answer our questions. And the answer can be ‘I don’t know, but let me find out’.

That statement is very powerful. It leaves me feeling like someone heard, someone cares, someone believes my girl deserves better.

If we don’t win the fight after exhausting all known avenues, and someone was with us. That’s ok.

We may have preserved some of our depleted energy, time and brain space.