For around 5 years now we have lived in a house whereby we have no access to our front door. Every delivery and door knock was greeted by one of us running round the perimeter of the house to redirect the person to another door.
I am sure there are many of us living like this - climbing over physio and medical equipment to retrieve your post from the letterbox. Visiting the loft several times a week to access supplies. Not being able to leave the house uninjured fighting against the clothes 'airer' and shower seat.
There have been times I have sat in the loft hatch swinging my legs gently and having a quiet sob. Why does it have to be so hard?
I do of course then give my head a wobble and remind myself how lucky we are to live in a bungalow - we no longer have to carry Amy up a steep and dangerous flight of stairs, nor do we struggle for wheelchair access into our house like we used to.
The bathroom situation has been by far the most difficult.
Presently we have a tiny wet room, a large shower chair, and an ever expanding 9-year-old. We had to stop wheeling the chair through the house as it was damaging the floors with water. This has meant a lot of physical lifting on a slippy falling apart tiled floor.
Amy has a severe movement disorder and can be quite dangerous when moving and handling. We have had our share of injuries over the years which is unfortunate when it's all for the sake of maintaining basic levels of hygiene!
Over the last couple of months, the planning permission and funds were finally agreed to make our lives so much easier. I recall a few years back someone from the council advising me to expect lots of obstacles and for this to be a long process. He was correct.
For some unfair reason, adaptations are a bit of a postcode lottery here in the UK. In the next county over for example, people are stuck using mobile hoists which are much more time consuming and difficult to operate whereas where we are, ceiling track hoists are standard for a non mobile person.
As usual it always comes down to money.
Sad as it was to have to sell our house that couldn't be adapted; we have been very lucky to be renting privately from an amazing charity. They have been instrumental in the instigation of these works and have been so supportive and understanding of our situation.
Yesterday the flooring work started. It has been an intense and incredibly productive few months. The builders, electricians, plumbers, decorators etc have worked tirelessly day in day out to get to the point we are at now and I am astonished how quickly it is coming together.
It hasn’t been invasive, the builders have all been lovely, and it has actually added a little excitement and positivity into our lives. I will likely miss them when they are gone!
Eventually Amy will have everything she needs in one room.
A bath at one end, a bed at the other end, all with a H track hoist in between. A bath is instrumental in helping with Amy’s high muscle tone, dystonia and mood swings. The knock on effect of excessive distress is usually seizures, insomnia and worsened gastro issues.
It’s the only activity we have seen make a profound difference to Amy’s comfort and quality of life. Every time she goes to respite the carers all tell me how much she enjoyed her bath and it makes me so happy to know she has this coming to her home too.
It has been so exciting choosing paint colours and flooring - it is actually starting to feel real! We are just waiting for hoist tracking, the bath installation (it's one of those massive hi-lo baths with jets!) and for the hospital style bed to be taken apart and put into the new room.
I have been frantically having a good clearout because I am determined to truly optimise the extra space we have and make it as great as it can be. It has been so much hard work! An endless succession of different professionals doing their part excellently - and I want to make sure I do my part which is do the space justice... and makes lots of cups of tea!
The work will absolutely transform all of our lives.
It will promote better well being for all of us, as well as being able to safely navigate through our little bungalow with space for Amys’ every growing medical equipment and supplies.
In the past I would watch programs like DIY SOS with mixed emotions. Thrilled the people are getting what they desperately need and deserve. Angry that they’ve had to resort to this extreme to get a home that is liveable. Frankly; and I hate to admit it; a little jealous.
So many of us need and deserve significant adaptations made on their property. For some it is a massive fight for funds, planning permission, or even getting the relevant persons to agree that something needs doing. Families like ours must fight constantly for so many things we don’t even want to need, and at times it is easier to bury our heads in the sand and admit defeat before we even try.
We often run on empty and pick our battles carefully.
It is easy to understand how people can get trapped or end up with mental health issues and worsening conditions because often the system around us doesn’t support us how we need it to.
Getting to the point we are at now hasn’t been easy but we are so very lucky and appreciative. One by one we have ticked off everything in the "cerebral palsy bingo"; big wheelchair van, moulded wheelchair with medical storage, rooms with hoists, and finally adapted bathroom! I know after this we can breathe a collective sigh of relief and start to enjoy an easier and safer life.
I know there are so many people out there desperately seeking to be at the point we are at now. Please don't give up. You can absolutely get there. There was a time when I thought we wouldn't be where we are today. I am rooting hard for you all and cheering you on.
For one reason and another it has been an incredibly hard year for our family so I am loving being able to share something positive with the world.
I can’t wait to update you all when Amy finally has the dream bedroom she deserves so much.