Resilience

t’s the development of the resilience muscle that gets any special needs parent through the never ending hurdles. When we think we cannot take anymore, we learn a new strategy to cope. We become exquisite at knowing when the resilience muscle is loosing strength and flexibility. Most times we are so caught up in it all, we miss the signs and at other times so much is thrown at us that we just hope it does not snap.

Right now, I know my resilience muscle is close to snapping. Too much has been thrown at us to deal with it all at our best. From Abbey still recovering but getting better to James coming down suddenly with the flu, camp preparation for Dan and a work expo for the business all this week … I’m just shaking my head.

So we are aiming for making the best of it all. Putting into place contingency plans in case Abbey goes downhill, others become sick and ensuring our plans made months ago will come to some sort of fruition for the family and business.

I’m working on getting some strength and flex back into my resilience muscle.

We opened the box

So much love and compassion in one small box.

It would be inappropriate for me to simply list the beautiful people who have shared their love and compassion in one post. They deserve to be acknowledged fully, with individual recognition and detail as to how their actions positively impact our lives.

I hope you will assist us in thanking these small businesses by liking their Facebook profiles and consider using their services or products into the future.

Having a small business ourselves, we know this community is always full of generous owners who personalise their donations. Who, like us, started a small business to fill a gap, a change of pace or to find a better way of being. Its hard work being small, but so much more enjoyable when you get to touch the heart of another.

So….

Thank you Pollinate Gold Coast for the beautiful flowers. I have enjoyed breathing in the aroma of the red roses while filling in paperwork for Abbey. Also trying to figure out what the green stalk like flowers are? The irises remind me of my mum-in-law and flowers I bought her so long ago. And the lilies remind me of all of the similar plants I have tried to keep alive past one flowering!
Thank you Tanya.

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!

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.

Days like this don’t exist.

Some nights when I come to do a #365CareAbbey post, I just shake my head in disbelief, as it’s the sort of post I would read and think ‘sheesh that sucks, I’d hate to be in your shoes’.

Today is one of those days. Actually it’s not even ‘one of those days’ that just drags on or nothing goes right. It’s a day you spend trying to get answers to questions that won’t be answered…..while keeping your cool and coming across intelligent and altogether.

A day spent advocating for my children at both their schools due to a situation that does not fit policies or tick boxes. I’m working through it, but honestly there are too many tears. But my voice, my child’s voice and my family’s voice will be heard. This is what drives me forward.

And as I end the night my girl has a change in the big seizure presentation and our driveway has lost majority of its integrity due to a storm just gone through.

Tomorrow I will assess damage of the driveway as I take Abbey up to meet the bus, check emails and start again.

To all of the parents who had ‘one of those days’ plus a bit more, I salute you.

Thankful for the opportunity

I have not expressed how thankful we are to have the opportunity to trial the marijuana oil. After seeing the 730 Report last night on accessing it, I’m even more grateful.

It will continue to amaze me how beauracracy at all levels of government can determine the health care that parents can provide their child.

Every special needs parents is more vulnerable to this. We are less likely to fight because we are already snowed under. If we do choose to fight the beauracracy, it is done so because our child needs it. It will take our already depleted reserves of time, energy and brain spaces.

Sometimes we need someone to stand along side us. Sometimes we need someone to listen and just explain a decision. Most of the time though, we need someone to answer our questions. And the answer can be ‘I don’t know, but let me find out’.

That statement is very powerful. It leaves me feeling like someone heard, someone cares, someone believes my girl deserves better.

If we don’t win the fight after exhausting all known avenues, and someone was with us. That’s ok.

We may have preserved some of our depleted energy, time and brain space.