Word of the Week - Stopped

Time just stopped when Stephanie died on the 7th October 2024. Life goes on and since then we've had 2 new grandsons join our family. One in February 6 days after Stephanie's birthday and one born yesterday that we've yet to meet.

We have 4 grandchildren now and they are our world. When the 5 children were small they were hard work, managing their different needs and activities but Stephanie our eldest was always there and part of it, she was the one who bought our family together. The boys just saw her as their sister and didn't question what she could and couldn't do, just accepted her for who she was, but they all grew up, something that she never got to do.

France 2002

Another holiday time and time not spent with Stephanie. I'm not getting caught out by events anymore, but it doesn't mean I'm finding events without Stephanie easier. Occupying my time and brain doesn't fill the space, it just highlights how much space I have for her.

We've had a fun filled few weeks with our adult children and grandchildren with lots of Easter activities, camping, days out and time with friends, but there has been no visit with Stephanie, no Easter eggs bought and delivered, no coffees out with her on our way back and forth, calling in to see her on our travels, no taking her out with me while I've done my shopping for everyone else. Different routes driven as there is no need to go via Gloucester anymore. 

It's not just Stephanie that died, it's part of our lives that have stopped existing. Being the parent of a disabled adult child, is so very different than being a parent to our other adult children. 

All our children left home and live independent lives, including Stephanie. But they have jobs, financial independence, their own homes, partners, children. can make their own decisions, can ask us for advice, talk to their mates, make their own decisions, make their own mistakes, ask for help, ignore us.

They can do anything they want, they can even take themselves to the toilet.

Stephanie left home and moved into supported living, but Stephanie couldn't do any of that. Nothing. Stephanie couldn't speak, feed herself, communicate. Everything Stephanie needed to do, was done for her, other people decided what was in her best interest and every year there were meetings to decide what was in her best interest, she never attended the meetings, it was too disruptive for her, for the meeting.

Her budget, how much, how it was spent, her personal allowance, financial advocate, her staffing levels, her health, her home, her activities, her transport needs, dietary requirements, dentists, meetings for blood tests. Every single thing you do for yourself, every single thing you do for a child, if you can imagine it, it was done for her and every single thing had to be agreed. Not task by task, but yearly, financially and by whom. By us as parents, her carers, social services, health and everyone else who had a financial interest.

It took a lot of our time, not a minute of it was resented, we were grateful of every single bit of support and help we received, but it was time consuming. Phone calls, meetings, emails, forms, assessments, budget cuts, reviews, worry. In between there were problems that needed sorting, staffing issues, safeguarding concerns. 2 years of covid, constant changes of staff, management, ownership of her home, changes of service users, issues with other parents to contend with.

After Stephanie died there was a flurry of activity sorting out her finances, exchanging emails sorting out a few bills, collecting items from her home, a few visits and calls and then nothing. 

It all stopped. Everything has just stopped.