To not worry

Its hard to write something inspiring or positive when you just want it to stop, just for a moment. A moment of no worry for my girl.

That worry infests so much of our lives. She has been very ill since the procedure, and continues to be. It is scary seeing her body working hard to fight the virus that has also infected her parents. We are over the virus in a few days, Abbey is looking at 3 weeks.

She has been so lucky with minor illness this year, just the odd snotty nose. But this, this is scary. Her body does not react like ours has. Back to the doctor to check all is ok, again … her lungs are clear, the virus is moving on.

The experience has us thinking how to cope with the next one. What do we need to change so that it will be easier? Honestly there is not a lot, its more about being ok reaching out to our network to ensure life can keep moving along for the boys and our own respective jobs.

Reaching out has been hard this time, as we are asking more often. Its primarily getting the boys to places they need to be, including school and Scouts. Abbey cannot travel when she is this ill and we need to be present in case. The boys understand if we cannot find a solution that does not overly inconvenience another, it just won’t happen.

Im now resolved that there will come a time when the boys may need to be home schooled with the assistance of their teachers, as we need to be together as a family or they need a break from the outside world.

Its all just moving a little faster than we would like.

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.

Adapting

Activities I dislike doing, but need too when I know a big seizure is coming:

Showering
Brushing teeth
Sleeping
Checking the mail
Being on the phone
Gardening
Cooking

Why?

Because I cannot hear her, cannot get to her fast enough or it can be dangerous (I managed to melt a microwaveable vege steamer a few weeks ago).

Sometimes I’ll brush my teeth in her room.
Sometimes I won’t answer the phone.
A lot of the time my garden dies from lack of attention.
Sometimes I hand bathe so I can hear her.

Adapting is key.

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.

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.

My turn for sickness

One extra strength hot toddie.
One bowl of salted caramel and banana ice cream.
New teeny tiny knitting needles. 
Next episode of Versailles.

Abbey has shared her cold with the family. She is now super bright and bubbly, ready for action. Obviously feeling much better.

I’m ready for bed

I dont know how you do it

I’ve been receiving a few comments along the lines of ‘I don’t know how you do it’ sentiment lately. I generally don’t know how to respond.

Should I go into depth about it? 
Should I just say something funny or dismissive?

I don’t know how I do it, it just has to be done. But I can tell you most days, it’s not being done. I’m just scrapping by as life throws all of its curve balls at us.

But maybe you would like to imagine what it is like?

This is my best attempt at it.

Imagine a 6 month old baby and all of their care needs. That is my Abbey.

Imagine your child is unwell, everyday for nearly 13 years so far. That is my girl.

Imagine everyday their life is at risk with every seizure and you need to run to get to them 10 times, no matter whether it’s night or day.

Tired yet?

Now put them all together. That is what needs to be done. Every Special Needs Parent has some version of this.

For us, add in 3 boys and their needs and our own marriage and jobs.

Priority is family. Priority is mental health.

Come the end of the day, some chocolate cake goes down very well! Thanks to another amazing mum for this gift!

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.

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!)