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.

My Boys

With the progression of Abbey’s medical needs, it’s harder to show the world to the boys. To expand their experience of this world. I’m grateful that we have been expanding our networks and communities to ensure we continue to move beyond our four walls of home. Today Daniel experienced his first Dawn Service for ANZAC day, then marched with his brothers in our local parade, all thanks to their Scout Troop.

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.

Make a Wish Foundation

Today Make-A-Wish® Australia – Brisbane South Branch came out today to chat about what Abbey’s wish may be. She was recently granted a Wish and it’s overwhelming to think an opportunity for our girl may come about.

The volunteers were so beautiful, compassionate and understanding. Trying to discover a Wish for Abbey, who is non-communicative and developmentally 9 months, is no easy task.

The Wish Volunteers took away what Abbey could enjoy, and it became clear her Wish should revolve around water.

A huge light was shining today.

Photos: Abbey learning sight words with Ali, being taught by Dan. During the lesson Ali held her hand while he learnt his sight words.

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.

Motherhood untethered

At the end of some days as a mother, you can feel yourself starting to become untethered. We all know raising kids is hard work, can just suck sometimes, but then they do or say something that melts your heart, then you explode with love but feeling crappy for thinking such things.

It’s normal.

Trying to raise amazing little human beings is a test of any parents’ personal and mental wellbeing.

Add in special needs and I’m finding these school holidays that my abilities to grow, to problem solve or to plan have reached their limits. More and more I’m finding my brain just cannot take on any more. It’s surprising to reach my limits, to truly know I can’t do more.

This is ok. This is normal.

What is the hardest is the need to keep going. Like any parent, it never stops. Kids still need you, need guidance, need love and some discipline. But my Abbey needs more of me these days, so other things are left. The kids come first, everything else is second.

Today I’m untethered.
Today I have no more capacity to entertain, discipline or play.
Today I cried.
Today I hugged my kids.
Today I embrace my limits and celebrate that I know them.

Now I find a tiny moment for me, as it will all start again tomorrow.

Photo: a trip to the local library was a lot of fun. Abbey loves it there.

Birthdays, Easter and Special Needs

Every special needs parent knows any special occasion is a game of Russian Roulette. Will we make it to the day? What illness will present? Is my child sensory safe? Plus the hundreds of other questions or concerns that arise. In the end we want to celebrate too, with even more gusto and excitement. Beware if we do make, we will milk every single drop from the occasion.

This weekend is my birthday – April’s Fools Day, Easter and the Easter Bunny comes. Add in that Abbey has not had a big seizure for 5 days, but continued with jerks and vacant seizures. She has also had some tummy upset. What this weekend would present, was a huge question? Here is how we tried to put it together.

Easter bunny was kept simple and the search for eggs was at 5 am this morning. A very efficient bunny.

Easter is about family time for us, plus being my birthday, so a hike was in order. We did it! Between 7 and 9am we walked 6 km on a local track. It’s was classed as a medium level track, but pushing 50kg up and down shale-covered hills nearly killed James. Abbey loves the bumps and wobbles, but did protest at the deep gullys. We know for next time to look for an easy level hike!

And birthdays in our family can last weeks. This year I expressed weeks ago 3 things I’d like to do: build a plant stand, hike, and a lemon meringue pie. Plant stand built by James and boys yesterday and hike today. Lemon meringue pie will come later, we ran out of biscuits and my dear girl had that big seizure last night and today we are up to jerk/vacant seizure number 10. She is also having very uncomfortable belly issues.

Sure we haven’t done as much as normal, it was lower key too. But it’s been a blast!

Why cleaning a toilet assists in achieving your greatness.

Dan asked today why he and his brothers have to do so many jobs around the house.

Previously I would have felt so guilty about it and answered meekly with apologies for the situation.

Today I see how I have grown and how he is maturing.

The answer…because Mum and Dad are caring a lot for Abbey. But we want the best for you and your brothers, like attending Scouts, music and travelling. To do that, we need help.

It’s not a lesson in we must all do jobs that we dislike.

It’s a lesson in helping one another to achieve our greatness. Even if it means cleaning a toilet.

His response was fabulous.

He listened, I saw the brain cogs turning over, then acceptance. And the conversation turned to burping jokes.

Photos: we are a team.