Nightmares

Nightmares …. you would think they would be about loosing Abbey. Of course I have had those, but my nightmares or those dreams that are most unsettling is for events that are so far removed from my normal.

The most common one is Abbey walking into my bedroom in the morning and saying, “Good morning, mummy.”

The other is being presented with time that involves nothing to do and I can choose. This one loomed large last night, mainly due to our Hummingbird House visit. There is nothing I need to do there. There is plenty to fill my time, family time and boys time. But I will have the opportunity to be Mum. Just Mum.

I’m extremely excited about what adventures I can have with these 3 boys, while Abbey is loved and cared for.

But my brain can not fathom this new kind of normal. And it will happen on a regular basis, not a one off every few years. Not long to put it to the test though!

Coming Home from Hummingbird House

Since coming home from Hummingbird House there is a small amount of fear. The fear of the unknown now becoming more known.

The situation cannot be compared to having your first child, but that fear of the unknown and finally having that child in your arms, puts you firmly on a journey going forward that you need to work out as each day passes.

Since the palliative word entered the vocabulary it was easy to slowly inject it into our day to day. To look at my girl in a slightly different light. To know we had started on this next journey, albeit walking around in circles it seems

Being at Hummingbird has finalised for me that this journey is coming to an end. I have always known this, but I had never thought of the process as having a beginning, then a path. It was always just an end. The crap of day to day, then an end.

As the seizures continue to evolve (very quickly in the last 3 weeks) and their consequences, as we reach out to services and people trained in this area, we are being eased onto the new path.

For the first time we are supported, besides just being loved and cared for. For the first time, I have access to a place if it all becomes too much. For the first time, Im not 100% reliant on James.

This is a wonderful place to start, however scary it is.

Palliative Care with Hummingbird House

Abbey has been accepted to Hummingbird House for palliative care assistance. Now, don’t get all down and blue reading that. It is actually a huge positive for her and us as a family. Not knowing how long we have with Abbey means we may have her for a long time yet, so getting acceptance to Hummingbird means we can move forward on some things we didn’t think possible only months ago. This is a time to celebrate, instead.

Hummingbird House

Finally our stay arrived. The main intent of this stay was for the staff to get to know Abbey and her family. Long days sharing information but empowering as we led the show.

The boys were welcomed and encouraged to play.

We are still processing our stay. It has shifted our world due to matters discussed and where Abbey is at currently.

I promise to share more as I can verbalise the depth of feeling.

The Flying Turd

Digesting all of the information we are receiving, is onerous, to be honest. There is an overwhelming theme though.

Enjoy the moment.

There is nothing more I can do for Abbey, apart from making her comfortable and allowing for her to experience happiness.

For the family, it’s taking all moments and slowing it down. There is nothing more I can do to make our family life easier.

And as Abbeys carer, it’s about giving myself permission to find the moments. To start with finding a little joy from moments not centred on Abbey, family or my small business.

Today I took up watercolour painting again. Let me present ‘The Flying Turd’. My first attempt after 6 years.

Dates with Husband

These have become the travel time to appointments and 5 minute sit downs while waiting for a coffee.

It’s sad, it’s also a little annoying. But at the moment it’s about taking every moment and making it something more.

We would love to go out to dinner, but it will come.

So….

Travelling in the car to the appointment is the time taken to order entree and chat about the day.

Waiting for that coffee is eating main course and dreaming about what we will do next.

Driving home is dessert, the time you cannot wait to walk through the door and relax together.

Update Marijuana Oil Trial

Coming to terms with…

I have spent a week trying to figure out how share the news. Finding a positive angle, a fun story to share or an uplifting antidote. There is none. Im more coming to terms with, ‘what is’.

Update Marijuana oil.
Abbey had her 3 month 24hr EEG to see if there has been any improvement on the EEG. There was none. BUT….. we have seen an improvement in seizure presentation. They are shorter and allow her to engage in school and outings much easier. BUT… its harder on us as the seizures happen when awake or asleep and up to 15 times a day. She is also having trouble breathing at the beginning and can go very pale. We prefer this new kind of normal, compared to weekly episodes of status epilepsy.

So… she is not in a better position medically, just a change in seizure presentation and we have our cuddly, giggly girl back more.

Update palliative care
This is such a heavy topic. We have had a chat with the boys, but their understanding is just not quite there. So we will keep chatting.

Last Thursday we had the most positive doctors appointment at our Childrens Hospital, on the most horrible topic. We now have a phone number to call when we are not sure or if something happens with Abbey. We have a resource to reach out to. This lightens my load. There are more conversations to come.

She has been accepted to Hummingbird House which will provide us with overnight respite, something we have never had in our 12 years as carers.

Its a new kind of normal now. Preparing for the worst, while enjoying the present. More resources, more people. It is positive, its mentally hard to engage.

No photo, my girl has not been in a photographic mood.

24hr EEGs

Good morning.
Miss Abbey kept has kept us up since 2am waiting for a big seizure to evolve and present. Every 20 to 30 minutes she would be up mouthing and chatting. 415am a big jerk interrupted our sleep. 5am the big seizure arrived. Finally she can sleep peacefully with her new ‘teddy’, the hard and metal EEG machine.
For Mum it’s back to work as the hospital teams start arriving around 6am for more tests and Chats.
Time for a hot drink and a shower, and the countdown to Home.

When will the paperwork end?

In January to early February I filled in over 50 forms equating to about 150 pages of paperwork related to the needs of Abbey. Yes, I kept a tally for about 30 days, just to see why I get upset.

We all hate paperwork, but a lot of it is frivolous due to internal policies and procedures of government or businesses in the disability sector.

This doozy is a form we need to fill in to allow teachers to administer medication at school. Perfect and extremely important for regular medications. Things can change quickly though, and this is when it tests procedures.

Abigail had stopped taking this medication, ahead of schedule while at Hummingbird House. To ensure it would not be administered at school, this form had to be filled in again and signed, advising not to administer. All to be done before the dose due at 12pm. Lucky I was home or Abbey would have been medicated.

I understand the need to cover bums for legal issues. I did it with a smile on my face and laughing at the situation, but one snide remark that this is silly.

I wish it was easier. I wish that carers did not need to run around printing forms to sign for nothing to happen … to photo and email back to prevent a course of action that would disrupt our children, all before a deadline.

A note in a communication book and via a phone call should be enough. And maybe it’s not enough.

All organisations who interact with carers or parents should have procedures in place that minimise the unneeded stresses to carers due to frivolous paperwork.

Who will take up this challenge?
Who will put the child first and allow us to do our caring role?

I am passionate about this. Carers waste a lot of time, energy, money and emotions filling out frivolous paperwork.

Watch out for future days as I share what is frivolous.

Update Marijuana Trials

Abbey has had no status seizure episodes since she started. This is a huge improvements on the 2 or 3 she would experience a fortnight.

The seizures continue to change in presentation which keeps us on our toes. She still has up to 10 a day lasting up to 5 minutes.

The marijuana oil has been interacting with the drug clobazam and making her slept up to 20 hours a day. We had reduced the sleepiness, but she is a bit wobbly on her feet.

There are more Doctor appointments, blood tests and hospital visits. Lots of recording and watching Abbey closely.

So far it has been more positive than irritating, but the trial and care of Abbey does chew into my time.

She still has a way to go as we need to address the wobbles ensuring seizure activity does not get worse.