A Home and a Workplace?

Purely Lora by Purely Lora Additional Needs

Purely Lora

Purely Lora

Hello! I live with my husband, cat and our son, who is nearly 2. Our little boy has a life-limiting epilepsy syndrome and this means we can get to...

It’s very strange having people in your home. You feel like it should be tidy, spotless and you should be dressed.

This can often be a crazy goal when you have an appointment at 9am.

Even if you are not actually being judged you feel like you are.

When you’re pregnant you have a home visit from the midwife send health visitor.

At the time I presumed it was to check I didn’t live in a hell hole and we’d resume our lives as normal after these two home visits.

Instead we have a steady stream of professionals who visit. Physiotherapists, OTs, community nurses, social worker, portage.

Over the last 2 years we’ve gotten more used to this experience, feel more comfortable having people in our home for an hour or so.

Then when they leave we can sling our PJs back on, even though it’s 2pm, and stick on the TV.

We are now entering a new phase.

We are struggling to care for our son between us. As a result we are beginning to have volunteers, careers and nurses in our home for longer periods of time.

As I write this we are unsure of how many hours a week this will be for, but there’s talk of overnight nursing care.

We go to bed while someone will sit in our son’s room, awake, and watch him to make sure he doesn’t have seizures or is sick or suction him if required.

This is a hugely alien concept. Our house will not only be our home, our sanctuary from the world which we can withdraw to, but also a place of work.

We have to complete risk assessments, adhere to health and safety regulations and provide equipment.

I worry our home will be judged.

What if I’m too knackered to wash the huge pile of syringes that accumulate during the day? Will I feel uncomfortable to leave them until the morning as I would now?

I don’t even want to think about being intimate with the husband!

And while I’d love a beautifully decorated, clutter-free house like you see in the magazines, in reality we live in a rented bungalow full of mismatching Ikea furniture.

As well as all the toys you’d expect a toddler to have we have numerous pieces of equipment for my quadriplegic child.

Let’s not even get started on the never-ending fluff from the cat.

I know we desperately need the help, and I’m incredibly grateful we’ve been offered it.

I just can’t help but worry about when I need a wee in the middle of the night though.


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