That’s how it currently feels. I would bet that the majority of people don’t even give a second thought to their housing needs… they almost certainly wouldn’t think about the difficult families like mine face.

We have a wonderful, stunningly beautiful home.

We love it here. But it isn’t fully suited to Sams needs.

After almost a year of planning, discussions and getting drawings done it doesn’t feel like we’ve moved forward much at all.

The council know what they will consider (please note, consider) funding, and it doesn’t come close to what Sam needs.

This we’ve always known, which is why we fundraise, scrimp and save, sell things we don’t need and generally do all we can to raise the money we’ll need.

We thought we were almost there 6 months ago, when our architect (also a good friend) drew up the most amazing plans imaginable – yes, it was an expensive design but it ticked all the boxes for right up to when our boy isn’t so little anymore.

You’d think as we’ve funding the vast majority of the work, the council would be happy as long as we made sure we did the adaptations they insist on, and that they are happy to fund, wouldn’t you?

Sadly, nothing is ever that straight forward in life.

The Council will provide a downstairs bedroom and washing facilities for him, however their suggestions leave us with no storage at all for any of his medical supplies or equipment.

Apparently, that’s not a priority. Strangely, having sufficient space to store medicines, continence products and feeding supplies is most definitely a priority… to us.

Sometimes I do wonder if the people in charge of these decisions actually have any idea what life is like for families with disabled loved ones?

Or just how much space a months-worth of medical supplies really needs in order to be stored correctly.

When push comes to shove, and it will, we will make sure that Sams needs are fully met, and that the home we love isn’t lost in the chaos of poorly conceived design.

I count us very lucky in that we have the ability to partially fund the changes that we need, many aren’t so lucky and end up in a horrible cycle of adaptations, followed by remedial work to correct issues that should have never have been an issue if family’s needs for the future (both short AND long term) had been more properly considered.

For now, there’s no more we can do until we see amended plans… I’m just so tired of having to fight all the time for what our little chap needs.