Wheelchair Chariot

The Wheelchair Chariot car has 2 flat tyres and needs all tyres replaced. Abbey has the opportunity to claim the front seat of the other car, much to her brothers disgust. Unfortunately Abbey is unable to sit for long in car seats, even with a harness, as she can squirm out. Plus it is not easy getting her into such a seat. It only short, much-needed trips that we will use this transport.

Now it’s a Mad dash to organise a tow, new tyres and getting the car home again.

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.