13 years old – we made it

13 years old today.
13 years.
We never thought. 
It’s hard to process we have come this far.
This is not only a celebration of Abbey’s birth day, but an acknowledgement of how far we have come and what has been achieved.
Now we party this weekend with friends who have become family.
She is joy.

Humming Bird Gala Night

It started as a reason to escape for a little while, but ended up being a beautiful readjustment to my reality.

Last night, Abbeys previous carer, Madi and I attended a Hummingbird House Garden Gala Event to raise funds for its continued existence. Every year they need $2million to continue operations. There are 3700 families who need their services, including our family, our Abbey.

If 3700 people donated $37 for 12 months, they are a significant way towards that goal.

It’s as easy as not having 2 take away coffees each week.

A few wines, pretty flower walls, great company and my first live auction made the night magical, and an escape.

The courageous sharing from a Mum and Dad who lost their son last year and what Hummingbird House provided to assist them through that process was too much. A quick dash to the back of the room to cry in ‘private’, but still able to listen to their story, was a slap back to my reality. That will be us one day. Will we be as brave to share our story, our loss, to assist other parents?

For all Hummingbird House give us in support, love, memories and time, we can only try to give back in whatever capacity we can to ensure other parents and siblings have access to this little slice of heaven. This is a very special enterprise.

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.