Words of Thanks that are Not Enough

Today, Courtney from Make-A-Wish® Australia – Brisbane South Branchvisited us again with someone,a generous spirit, from the community that surrounds this Foundation. This wonderful and ‘Thor look-a-like with a beard’ according to the boys, gentleman, has given us back time. His name is Tommy, and he and his ‘crew of Avengers’ have generously donated their skills to build the deck around the pool.

There are no words of thanks that are sufficient. The only words I can get out of my brain are WOW and Thanks. The rest is a scramble. Why? Abbey had 5 seizures last night and 3 more today. Things are upping again in intensity. We are all on guard and watch, as we don’t know why. This is the focus, and as always so much else is put aside.

When chatting to Tommy, I offered we are in no rush, whenever suits you. I’m loving his response of getting it done ASAP as we don’t know how long for Abbey. Of course I know this, but in no way do I wish to be a burden to another.

The pool deck is the next goal and James and I had hoped we will get it done in time. We both know deep down we probably won’t, but we keep fighting.

Tommy and crew will give us more family time and help us move other projects forward. It will give us more than inside family activities of movies that passively include Abbey. Now we can maybe plan a late afternoon BBQ and evening dip in a warm pool with Abbey, the small things will be accessible and easier, for the benefit and enjoyment for Abbey.

And still all my brain can say is WOW.

Courtney also gifted Abbey and family a small box of goodies from the community. I have not opened it yet, but will do when we can all be together as a family and Abbey has a moment to engage. Hoping tomorrow, at the latest Monday. I look forward to sharing with you the generous human spirit.

As always, I am amazed at what the smallest gesture can do for someone. When it’s on this scale, it’s a lot to digest.

Thank you Tommy. WOW.

Time to start finding some wetsuits for a winter dip!

Stress

I place a priority on caring for myself to ensure I’m able to function physically and mentally with everything that is going on. To be honest, it is effing hard at the moment. I use all of the strategies suggested by the professionals: eat well, exercise more than I ever have, find moments to relax and switch off, but it turns out my body is struggling.

A trip to the doc for the annual skin check, brought up the funny little rash I have been experiencing for a few months. I have gone through the list of things to manage it (eg changing shampoos, wash, detergents etc) and nothing helped. It’s a bit irritating to be itchy, it looks like I’m diseased.

Turns out I am not diseased. It’s a stress rash. Never had one in all of my life.

This leaves me a little perplexed, because how do I reduce the stress levels? How do I make changes to all the things that NEED doing for it to be less stressful? Where do I turn when I don’t know what is causing the additional stress? Is it stress or unspoken emotional burden?

Don’t worry, please. I’m mentally fabulous. But it’s weird when you think you are on top of it all, your body lets you know otherwise. I’m going to listen to my body, discover the hiding stressor and flick them to the curb!

(How can I not share another photo of my girl? Im so proud of her for what she achieved this day. This is the equivalent to one of my boys earning a challenging Scout Badge!)

Own the moment

One of Abbey’s greatest gift to me is learning to own the moment.

This photo was taken recently at school by her teacher. It is one in a series of 3 photos that were presented to me by her teachers as a Mothers Day Gift. Upon seeing them, I felt terribly sick, then heartfelt sadness, then overwhelming joy. From a flitting moment of what life could have been, to what life is, to ‘OMG she is just gorgeous and she is MINE’, all in a second.

Abbey lives in the moment, but more than that she owns it. If she is happy, she lets everyone know, and calls out for people to come join her. If she is sad or upset, she lets us know that she needs help or comfort. If she is tired she sleeps. She never is passive in a moment; she owns it and invites others to join her (or tells us to nick off in none-too-subtle terms so she can be alone).

This gorgeous photo shows a moment in which the seizures were not present, she was loving standing up against a wall and she was with her favourite people. She wasn’t just present, she was taking control and milking it for all that she can for her entertainment.

And that is where we, as a family, are at. Owning our moments and choosing joy wherever we can.

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.