Right now it is between GJ button or OGD surgery and so on.

A lot of huge decisions, a lot of trial and error, a lot of wait and see, a lot of sleepless nights.

Building a den and hiding in it is no longer an option. Nor is being lay face down on my bed shunning the world around me.

I am an adult now. A responsible, determined, fuddled adult.

Instead I turn to others like me, I take to forums, I take to consulting friends, I take to reading medical journals and so on.

Our biggest issue right now is housing. I am sure you can relate. You see, we bought our house a few years ago when I was pregnant with Amy. We moved back in with our parents and saved frantically stashing away our pennies like squirrels harvesting acorns.

Finally we did it. We had a 10% deposit for a small two bed terraced house, it was to be perfect for our little girl. NOT.

Fast forward almost three years and the stairs are becoming a back breaking and dangerous mission and our wheelchair doesn’t fit into our house anymore.

Navigating through our equipment ridden house is reminiscent of a scene from star wars, dodging enemy wheels and benching, souring past forts of tube feeding supplies.

So the wheelchair stays in the car and we carry Amy to our house.

Her dystonic, sudden and unpredictable movements render every transition a risky manoeuvre.

So we were told we need to go on a social housing list and await a suitable house.

Our house will not fit a lift, nor will it accommodate an extension, not to mention the ever size increasing equipment and overall lack of space to breathe.

I am told the housing could come through tomorrow – or in ten years, or even not at all.

Housing like ours is in high demand but seemingly non-existent. I see constant new build houses and flats being built without a moment’s consideration for families like ours.

We don’t want to sell our house.

But we will have to. I have recently turned to the idea of renting again.

It is a huge step back for us and actually renting a bungalow here will cost almost double what our mortgage does.

My biggest concern is why this is being allowed to happen?

What would have to happen for this very serious issue to be given the attention it deserves?

I understand fully that this isn’t the fault of anyone in particular, but at the end of the day the safety and quality of life of our whole family are being compromised by our current living situation.

In our most recent TAC meeting I voiced these concerns. And whilst it was acknowledged and empathised with – there was no one around the table with the power to help fix this problem. Everyone has agreed it is a very serious issue but has nothing within their remit to assist.

We can’t magically force an adapted house to appear from nowhere, no one can. But surely there is an option out there somewhere.

I am awash in a land of researching – researching criteria for housing benefits, finding contact details for local politicians, seeking out applying to TV shows for adaptations (even though I know full well they only help people who have land space for their house to be extended) and so on.

I don’t want to be one of those people who mope and have an overwhelming sense of entitlement, but this is a real problem.

At the same time I know there are people far worse off than us and this does make me feel bad for being so upset about these issues.

But what will it take?

What if I tripped over her tube carrying her up the stairs?

What if she hits her head on a door way again and gets seriously injured?

What if my back finally gives in and I am physically unable to carry her up?

We only have two downstairs rooms and it isn’t possible to make these into a bedroom or bathroom for her. What would happen then? Would this cost the “system” more to provide care than it would suitable housing?

Yesterday I rang a letting agent about renting a property. I explained our current arrangement and what we are hoping to achieve. The lady said “there will be no point viewing the property until you sell your house”.

I explained the catch 22 of this… what if we sold the house then this property wasn’t available?

How can we sell our house not knowing exactly what is going to happen and where will we go?

In my opinion you should be allowed to rent all the houses you want as long as you are able to pay each month.

I got emotional, cried, ended the call.

I have since received three voicemails from this lady who is obviously embarrassed at how she directed the call. She is trying to get someone to come and value our house… she admitted to “getting the wrong end of the stick” and hadn’t stopped to consider that we have saved up enough that we can rent and sell our house once we have moved out, for example.

I am infuriated that they were so money minded and so self-interested that they didn’t stop to listen to the full story. I understand that they are a business and that it needs to be worth their while… but all I wanted was to view the place! It felt like a huge barrier had been put up. It felt like yet another avenue was closed off for us and that we are destined to struggle on until the worst happens.

It shouldn’t be a case of whoever shouts loudest, or worst case scenario occurring and rendering you unable to be a carer anymore.

It should be that strategies are in place to help families like ours to pre-empt future issues and prevent them from happening.

The world knew three years ago that my child would have significant mobility challenges.

Where is the provision for this?

Her hips are already starting to become asymmetric and if my back is gone how will I do our bench sitting and standing frame transfers?

I will let you all know where I get with the contacting of the MP and so on. I want to at least try and also speak up for, not just my little girl, but for everyone out there who is seriously risking their mental and physically health everyday trying to care for their child safely.

We only get one chance to live and it pains me deeply how challenging things can be.

I want to move past this issue.

I want to be able to go from car to house without injuries and twinges in my back.

This way I can focus on other areas in our life such as physio, communication, gastro issues… maybe even getting a hobby.

Look after yourselves everyone. If you are going through what we are – I’m sorry.

I hope that you too one day have what you need to live as much like everyone else as possible.

If I win the lottery… I will try my best to help others in our situation! Until then… painkillers, doctor visits and whatever else to fix my back and more star wars themed entries into my little home.

May the force be with you.