Brisbane Lions!

Recently Dan and Ali had the opportunity to see their first football game between Brisbane Lions and Sydney Swans thanks to Make-A-Wish® Australia – Brisbane South Branch and the businesses who support them.

The theme was to dress up as a cowboy which Ali was right into. Dan was thoroughly impressed by the sport and even had a football signed by a player. Their Dad had the pleasure of sitting back and watching the boys enjoy themselves.

I waited at home with an unwell Abbey to hear about their adventures. The biggest thrill is that they were able to enjoy a new activity with no constraints and just be in the moment. Both boys are playing footy each day.

Whatever Goes

Cooking meals still continues to elude me, in terms of recipes that don’t require dedicated prep time or just deciding what to have. My brain is overloaded and the need to eat or feed the family is a huge stress.

I know how to cook. I love to cook.

Its the medical care of Abbey that makes it hard.

Recently, cooking sausages took about 40 minutes as I had to stop and start the stove top to attend seizures. Last week I melted a microwaveable vege cooker, with the vegetables mixed in with the melted plastic as Abbey had a long seizure and I stuffed up the timing on the microwave.

We use Lite n Easy some weeks. Some nights we do platters of food and everyone gets their own.

We do so much more pre made stuff now that can be heated or put in the oven. It removes the potential of setting the house on fire while we attend seizures.

But what we eat must be healthy as we are all in this together and it’s hard. The boys are learning how to prepare salads. Dan is learning more about microwave cooking and basic oven usage.

It’s getting easier to find the balance between our previous home made yummy meals and pre cooked ,mass produced Lite n Easy. We are lucky we have options that are flexible to suit our daily needs.

It was my need for continuing to try and keep the norm that was making it harder.

Tonight it was a picnic on the floor with crackers, dips, cheese and meat while watching Black Panther.

Chaos

We are full steam into the chaos!

Midnight vomits, missing pump machines, drug changes, seizure weirdness and the normal family needs.

Abbey is not wanting to engage the past 2 full days at hospitals and doctors. She is also unwell with a cold. It’s long days in a wheelchair waiting to see the next doctor. Today she has been jabbed 3 times for bloods, hormones and flu vaccine. She survives with massage and a comfy bunny to sleep on.

Mum and Dad survive with exquisite organisation, coffee and secret hand holding for support as we watch our daughter manage this unfair load.

Tonight we will take a family moment with make your own pizza and a movie.

Capturing Moments

Capturing moments within the chaos we engage in seemingly every minute is critical to making sense of our journey together as husband and wife. Tonight we are child-free for the first time in nearly 13 years. We stayed up late (for us on a school night) to see a live sketch comedy show by Cheeky Moon and laughed out loud at their energy, intelligence and irreverence.

Out of our control

When I first took on the challenge to share a photo a day in my life of caring for Abbey, it was easier. We were in the place of fighting for her future. Education, medical rights and advocating for the needs of our family were priority. The day to day highs and lows were numerous and easy to share.

Strangely this has not changed, but the way in which I view what is important has. Previously I was concerned about making a change, trying to make it better for others through highlighting what makes it hard for us. Now it’s the emotional journeying knowing where this palliative journey will lead. We are more focused on building a resilience within ourselves and the family as a whole.

This means those situations that are out of our control or we cannot immediately influence have dropped in priority. Now we share our spare time together, doing what we love to do as a family or individually.

Today it’s enjoying Avengers: Age of Ultron in spurts around the caring of Abbey, medical discussion, housework and cooking again. It’s back to simple joys with our family. Nothing is more important. Nothing.

Going out to parties

Last night we were invited to a friends birthday party. How exciting it was that we were available and everyone was well to attend. We had a fabulous night meeting new families, while taking a moment to stop.

Abbey partied for a short while but then fell into a very deep sleep with lots of seizure activity. Our hosts provided pillows and a warm doona for her. We stayed longer than we thought, so didn’t come too prepared.

Given her situation, James and I played the parenting game, Changing of the Guard. Abbey was showing all of the signs for a big seizure, so we could not leave her side. While one of us chased boys, refreshed drinks or food, the other stood/sat by her side. Then we changed, to give the other a break from watching and socialising.

All up it was 4 hours of socialising and parenting. Today we are exhausted. We are noticing our need to have more recovery time to be able to keep going. At times it’s shocking to the brain, where this is taking us. It’s unchartered for us, but we are learning to go with the flow.

Compassion for Self

A carer is thrown into situations that we never ask to be in to either advocate for our child or provide for other members of our family. These situations force us to face our fears, our uncomfortable thoughts and push us to challenge ourselves. Sometimes it just sucks and is really embarrassing. Here are my latest efforts!

James and I had the opportunity to have time together and with Abbey while our boys visit Nanna for a few nights. I was required to drop the boys off at the airport, with Abbey in tow, by myself. That is a logistical nightmare in itself. The icing on the cake is that I am actually scared of airports … not the flying, the airport.

You see, when Abbey was younger, she and I travelled to Melbourne for her diagnoses of CDKL5. That trip was traumatic for me with no sleep for 3 days and seeing my girl seizure constantly for days, plus other hurdles whilst there. The result was to push me over the edge into severe depression, stress and anxiety. Woo hoo. Abbey and I both recovered, but now travelling to an airport is scary, as my mind screams that Abbey and I will die, even if Abbey is not with me.

Strangely I’m fine flying, but making my way to the airport, checking in, going through security, and waiting for the plane is very unsettling. Of course I talk to myself and I know all is fine. I have enough evidence to challenge any unhealthy intrusive thoughts. Plus, ironically, I’m married to a pilot. I know it’s perfectly fine. But a part of me I can’t control tells me it isn’t, constantly.

When I had to drop the boys off, with Abbey coming also, my body protested. I slept, intermittently, for 4 hours the night before, petrified that Abbey would seizure while going through security and we would need medical assistance (which we avoid). I was up earlier than the boys (who were being woken at 3:30am), visited the toilet many times. I had everything planned the night before and knew exactly what would happen, but it did little to calm my nerves.

The drive in was very uncomfortable; the fight/flight response was very strong and it was a mad dash to the toilet (again) from the carpark to the terminal, while I coaxed three very tired boys with bags and suitcases.

At this stage I’m a bit of a wreck. But I think the boys saw the mad look and knew to help Mum get everyone to check in. Who would have thought I could sweat so much just standing in a queue?

Next comes security…holy s**t. No worries, no seizures, no dramas. Very easy. My bloody, stupid brain.

Now we wait in the lounge area. All good, body relaxes.

Of course I spent a lot of time yelling at myself internally for being so stupid and letting this get the most of me. Letting it cause embarrassing situations, upsetting the boys and just generally making this whole thing harder. Once we got to the lounge area, I stopped and thought, ‘sheesh, there is something wrong. I need some help here’. If my bestie had this reaction, I’d love her, support her and gently suggest getting some assistance.

I did nearly cancel the whole thing as I didn’t sleep. And it would have just been easier. But NO! I did it. I now have time with my girl and my husband, an extremely rare treat.

I know now I need some guidance to assist with my fear of the airport. Something just ain’t right, plus I’m tired of the mad dash to the toilet with bags, suitcases and 4 children in tow!

No more fighting it; convincing it. It’s time to attack it; challenge it convincingly and, hopefully, smother it once & for all. So I’ll speak to my support crew of professionals and amateurs alike. Like everything else, it’ll take time. And that’s perfectly OK.

How to help, when you cannot

It’s hard watching a friend or a family member travel the journey of caring for a child with specials needs, let alone a life-limiting condition.

We can feel helpless, and I know the feeling. I see many of my friends battling conditions they can’t solve for their child. They don’t know what to do next or what is even normal. Their childs’ condition and the impact upon their family is completely different to mine. But I know the feelings of overwhelm, frustration and sadness, mixed with the moments of extreme joy and relief.

If you feel like you can do nothing, but really want to assist. Can I suggest donating to a charity that will directly help your loved one?

For our family we put forward Hummingbird House, a place for children who have life-limiting conditions or palliative status can be cared for medically and safely. For the first time in 12 years, our family visited in February and we had special moments, as a family, while Abbey was safe. And for the first time, I have somewhere I can turn when it gets too hard.

Hummingbird House is funded primarily by donations, as are so many other disability community services. Sometimes there is nothing you can do, because we need the assistance of professionals. Can you help us to continue to access these services? Can you do your next fundraiser at work for the charity/organisation/community services that is dear to your loved ones heart?

If you are not sure, please ask us.