The Year that Was 2023

I’ve had a lot of low points this year, 2023, and it constantly feels like a struggle with the ups and downs of life. Honestly this year has had many downs but there has also been some highs.

I started the year with a real bad chest infection and ended up in A&E where they found a shadow on my lung. It was nothing sinister though and I did get better.

Star had her Enterography and they found that she had no sign of bowl disease, but they did find some other issues which have still not been investigated any further ten months later. This is my job for the new year. I’ve already requested and received all her medical notes and I’m putting together a whole load of questions to put to PALS in the hope that some doctor will contact us. In the last 16 months we’ve had very little information about what is going on, seen only one doctor and received only one letter from the hospital. Her only appointments at the hospital have been for catheter issues apart from her Enterography. (Small bowel MRI) Her spine MRI (Which we received very little information from other than they needed to consult the Children’s hospital) And her urodynamic testing (which showed some abnormalities and she was referred to a consultant with a year long waiting list)

I had a couple of theatre trips at the beginning of the year to see Matthew Bourne’s Sleeping Beauty and My Fair Lady. I saw Sleeping Beauty with two of my oldest friends and it was a wonderful day, next year we are going to see Edward Scissorhands by Matthew Bourne and I can’t wait! I saw My Fair Lady with my lovely Sister-in-law and next year we are going to see Blood Brothers. Something else to look forward too. I also have theatre trips to see Drifter’s Girl (when I was nine years old I had a cassette by the Drifters and it was played over and over,) and I’m finally taking the girls to see SIX. I do love the theatre!

In April I found out that I had nodules on my thyroid which needed further investigation. These were found to be benign in November. I didn’t worry too much in between, they didn’t give me too much trouble, are unnoticeable from the outside and I know they can be easily treated.

Boo did her GCSEs and failed most of them but she did get some good results in some and secured a place at college. She loves her college and threw herself into it full force and has made some lovely new friends. Unfortunately, we found out this month that her work is not up to standard and she is being dropped from all of her courses except Maths. She will, however, be allowed to continue her music class without being graded, and she can do extra curricular work, so may continue with her drama which she has enjoyed. The college is going to help her find a more suitable placement next year. I fought tough and nail to get the college to keep her on, unfortunately, they can’t give her the extra help she needs because she doesn’t have an EHCP, her previous school had told me that having one would hold her back! We are going to work on getting her an EHCP and she is already in the process of an Autism/ADHD assessment.

The Little Man was being home educated at the beginning of the year which was going ok, but after a visit from the Local Education Authority in February, he expressed a wish to return to school. This triggered a program when he was forced to return and we were promised that he would get a place in a school in the area before the end of year Seven. Unfortunately the place he was given was back at his old school. From day one he had problems but it was only 3 weeks until the end of the year so they agreed he could start again in September. It didn’t go well. The school say that we over reacted about the treatment he had at school, and what was normal school banter was perceived as bullying. They claimed they did everything in their power to make things better for my Little Man. I took him out because I don’t count bruises as over reaction! His return to school lasted 3 weeks. We started an EHCP for him at the beginning of the year and it was originally rejected by the LEA. So, I decided to take it to court. The day before the tribunal hearing the LEA backed down and said that my Little Man needed an EHCP. After much paperwork and interviews, the draft copy of his EHCP was received on 15th December. I replied with my suggestion of which school I thought would be suitable. I now just have to wait and see if they can take him. The school is a ‘special needs’ school. After everything we have been through, it’s quite obvious that the Little Man is not suited to a regular school place. He has had problems since year one. I’ve had to take him out of school three times. Fingers crossed that next year things will be better for him.

In July Graham decided he’d had enough and walked out on us just before Boo’s 16th birthday and 3 weeks before our holiday. It was a bit of a shock at the time, it felt so sudden. With hindsight I can see that the problems were there for a long time but I’d been a fool thinking that he loved me enough to get through it all. If love is strong enough you can overcome anything, but without it then it all falls apart. It was difficult to accept, but Graham just didn’t love me enough. The kids have had trouble in processing him walking out on us, but he’s still around to help when needed. I’m working on needing him as little as possible in the future. I don’t deal with rejection very well, I have had to deal with it all my life from a very young age and I just don’t like it. But now I understand my real problem I can work on fixing it.

Without Graham I thought I’d have to cancel our holiday at the beginning of August. My eldest son came to the rescue and we booked trains to get there. He was strong enough to carry most of the luggage, the kids were able to carry their own bags and we were only going for a few days. So we did it. I went on holiday with three autistic kids and an autistic adult, on the train, in a wheelchair. I do actually feel so proud of that. The kids said it was one of the best holidays they had had in many years. My eldest son had a fabulous time as he’d not been away for a long time. I feel real bad for him missing out so much now. He used to go and visit his Dad in the South of France, but that hasn’t happened for a long time. So we went to Weymouth and even though the weather wasn’t brilliant we had a great holiday.

Boo had her 16th Birthday at home but invited some of her friends around and had a fantastic day. The Little Man turned 13 so I now have no children, only teens and adults! The Little Man also had his birthday at home but we tried to make it as special as possible for him and he was really happy. Then My lovely Star turned 18!! She didn’t want to go out (She’s very self conscious of her catheter!) which is a shame because there is a really nice restaurant in walking distance. (The original plan had been a small party at a place owned by her Dad’s friend but the plans for that had fallen through, and Star wasn’t actually on talking terms with her Dad at this point.) She had a lovely birthday though with many cakes and presents. Her boyfriend came around and we had Nandos for dinner! (her choice) It wasn’t how I expected my child to spend her 18th but her happiness was most important.

I have a new car! It has adaptations so I can drive with my hands, it’s not very comfortable for me though and I’m finding it very difficult getting used to being on the road after five years of not driving. I will keep trying though. I can drive it fine, I just can’t cope with other cars on the road. I’ve taken to driving on Sunday’s only! I’m not rushing, there is no need. I’ll build up my confidence in time. At least I have wheels. I do need a lighter wheelchair that I can lift in and out of the boot though.

Christmas was a little up and down, mainly because of me. I found it really difficult this year. I usually find it difficult because I lost my Mum on Christmas day but I’ve been having such mixed feeling about my relationship with my Mum. I think this year is the last that I will devote any time at all thinking about it, it upsets me unnecessarily, I won’t let it anymore.

It was also difficult to navigate because of Graham who wanted to be part of our Christmas celebrations but it wasn’t easy for me. Originally he was going to stay over Christmas Eve so he could be here Christmas morning. Thinking back, Christmas mornings have never been easy, so I though it would be better if he came Christmas morning and stay over Christmas night instead. He said he would be here at 10am and arrived mid afternoon. (no surprise from me!) The two oldest girls cooked dinner all by themselves and I only helped them dish up. It was pure joy hearing them laughing in the kitchen while they worked. I’m going to have to make them cook more often 😉

Dinner was amazing, it really was, they did a great job. After filling our bellies we played Cluedo. Graham had spent the day playing games with the Little Man and everyone had such a lovely time. Graham didn’t stay over. He never intended too, he didn’t even bring a change of clothes. I was a little upset but I understood and he went home about 9pm. Then the girls took over the television to play computer games, so I went upstairs to watch Eastenders in bed. (which was actually pretty good! Pity they spoilt it by making the rest of the storyline ridiculous.) I ended the day feeling content.

So, as the New Year approaches, I know my problems haven’t gone away, but I feel more positive. I know it’s not going to be easy and the struggles for health and education will continue. I begin the New Year in hospital having my treatment. I’ll continue to fight for my kids while they need me. I just wish there was someone who could help me! I have had a couple of people offer some support, they’ve been to visit me and checked in on me regularly. For that I will be truly grateful.

This year is a new chapter in my life.