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!

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.

Little Brothers ROCK!

Abbey cannot be left alone due to the seizures. Never have been able to leave her alone.

This does place a few constraints on the favourite past time of parents, when we whip in and out of a place, leaving kids in the car alone. You know what I mean.

Dan took this picture this morning with his sister while he waits in the car with her. I drop off his brothers to vacation care and sign them in. Once I come out, Dan can go. If while I’m in the building Abbey has a seizure, Dan honks the horn to let me know.

Why don’t I take Abbey out of the car to drop the boys off? Two reasons. One, the wheelchair ramp access is locked and yes, they would unlock it for me if I ask. But more importantly, it’s a pain in the arse to get the wheelchair in and out of the car for a 1 minute pit stop.