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Raisie Bay

new year

Reflecting on 2019

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I like to take a little time at the end of the year to reflect on the things we have done. This is my pick of things that happened in 2019

The Fun Stuff of 2019

February is half term and we decided to take the kid’s to The Think Tank which is an innovative science museum in Birmingham. It was one of those days that started out a bit tricky as the kid’s had wanted to go somewhere else. But it ended well and they had loads of fun

The Flea Retreat. We braved the welsh hills and spent a May weekend in Wales. Graham and the kids stayed in a hotel in Aberytswyth while I stayed with a group of lovely bloggers at the Tynrhyd Retreat. Apart from a few mobility issues, it was a lovely, memorable and relaxing weekend.

Our Summer Holiday in Cornwall. We braved the long journey down to Cornwall as I’d not been there for many years and it was a new place for the kids to visit. Although we went in August but were not blessed with the best of weather. We made the most of our holiday though and even managed to meet up with some old friends. Cornwall is truly a beautiful place and I only wished we’d had some better weather to do some more exploring.

ST Ives Beach

We also had a few more days out, including our annual trip to the Wildlife Conservation Centre, and getting to meet some exotic animals close up. It was a pretty wild summer.

Autumn was a little slower, but we did manage a few trips in winter. We did some lovely pottery painting and managed to get to the local Christmas fayre and watch the switching on of the lights. That’s something I’ve always wanted to do since we moved here six years ago, but the first time we have made it.

Birthdays in 2019

With seven of us in the house there is always a birthday on the horizon. It’s my eldest born son’s birthday in January, then Graham’s shortly afterwards. Then we have to wait until the end of June for Eldest Daughter’s birthday, swiftly followed by Boo in July and Little Man and Star in August. Finally it’s my birthday in November.

No big parties, but many meals out from Frankie and Benny’s, to Pizza Hut, to Teppanyaki. We also had meals out for my Sister-in-law’s 50th birthday and my brother’s birthday.

I went to my first ever baby shower for my great niece, (my nephew’s daughter.) We had a confused moment from Boo when she heard the baby hadn’t been born yet, she wondered who was going to get showered? I have three nephew’s with grandchildren now, even though I have no grandkids myself.

Health in 2019

This year I started joining in with a monthly writing prompts link up with A Chronic Voice. It has given me an opportunity to update my readers on my health without boring you all too much. But in brief, I’ve stopped my monthly infusions and I’m currently in limbo land as to what will happen next. I’m off to see my consultant in January and after my recent test results I don’t even know if my diagnosis is going to change.

Mentally, I’ve taken a huge dip. I don’t like not knowing what’s going on and I am in fear that this is it for the rest of my life.

My girl, Star, had genetic testing last year which has been repeated because it was inconclusive. It’s also involved a lot more tests as her geneticist is quite certain that she has Marfan Syndrome. She has also grown so quickly this year that her skin is suffering. She is having regular cardiology checks which is reassuring. I’m hoping we will get some answers in the new year.

My Little Man was finally diagnosed with Autism, but he has a long way to go before we know exactly where on the spectrum he is. The good news is that his school is backing him up and he’s already getting a lot of help.

Other Stuff

I went to the funeral of my former husband’s sister. Another Cancer victim and such a sad occasion. I did get to see a lot of family members I’d not seen for many years.

We got a new car which is lovely, A Ford Kuga. Sadly, I have had to give up driving. I am only allowed to drive adapted cars and as I was driving less and less, it seemed pointless getting another adapted one. The good news is, I’m a lot more comfortable with my husband’s driving. The adapted car was automatic and I’ve never drove an automatic before, I’ve always driven a manual car.

The new one is manual and my husband has had to change his driving habits that he picked up by driving an automatic. I feel so much more comfortable watching him move around the gears. I can’t really explain it, but I think it takes a very different mindset to drive a manual than to drive an automatic, and I just wasn’t used to it. I’m still a little depressed about not driving though. I’d give anything to drive the Kuga.

fod kuga

Happy New Year!

I have to end by talking about what we will be up to in the New Year. I don’t like to plan too far ahead but we do have a holiday booked for the summer. This time we are off to Dorset which is a little closer. Fingers crossed the weather will be kinder this year, or we may start taking our holidays in May again. Have you noticed how much nicer the weather is in May these days?

Also, I’m very excited to be getting my own new wheels. My power chair has been playing up for a while and early last year had to undergo some repairs. But now, it’s really becoming unreliable (Which is a little scary when you can’t walk) so I’m getting a new one. I’ve already bought it and I’m waiting for delivery. I’m also having my family bathroom replaced with a bathroom. I may also have a lift installed but I’m undecided on this. It depends on how much room it will take up. Personally, I’d much rather have a stair lift but apparently they are not suitable for people with neurological conditions.

Thank you for reading my blog, I really appreciate all the support I receive. Just in case you didn’t know, here are the other places you can find me.

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2016 – A year on Raisie Bay

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Today’s post is a little self indulgent as I look over the year 2016. The year started a little crazy and I needed to remind myself of how life has changed for me and look at all the things I have done.

January 1st 2016. I woke up with pins and needles which wouldn’t go away. As the day wore on they got worse and spread to other parts of my body. By the end of the day I was in a hospital bed paralysed from the neck down. This was the start of my journey with Transverse Myelitis.

In February I came fighting back with positivity. Despite losing my mobility and then losing my car I was determined that I was going to face everything full on. I was unable to get around much but we had a fun day at home when we played Popcorn Olympics.

By March it was apparent that I wasn’t getting out much, I posted on my blog a lot more than I would usually have time for. I also started coming to terms with my disability. I think up until this point I’d been sure that my recovery was going to be quick. Now, it was time to think about how I was going to cope in the future.

In April I realised I’d become a little obsessed with the trees at the bottom of my garden. I was watching them to catch the changes between winter and spring. I guess not being very mobile meant I spent more time looking at these trees during the first months of this year than I had done in the previous 2 years of living here.

Also in April I was watching a weekly drama, The A Word. As a parent of two autistic children I was intrigued by the drama and how it portrayed a family dealing with autism for the first time. I wrote several posts about the drama and compared it to my experiences. 
May was a busy month. It was also the month that I first ventured out on my own when I went to Blog Camp Birmingham 2016. I also looked at why I blogged, it’s always good to do this, especially if you have been doing it for a while and are not sure where you are going. It’s also a good thing to do when you are just starting out so you can look back and see if you are still doing what you set out to do or if you have taken a different turn. My blog has gone around in circles but my Blog Manifesto that I wrote in May is still how I feel about it all. 

I also found out in May that I’d become a finalist in the MAD blog awards of 2016. I really have no idea how I’ve made it to the finals three times, I must have some really lovely readers who vote for me. Thank you from the bottom of my heart.

One of my favourite posts of may was when I decided that I was going to add a lot more kindness in my life. Paying back acts of kindness, or even paying it forward, it’s always such an rewarding thing to do. I also started a twelve and a half week course on personal development, or more accurately personal values development. I really enjoyed The Activation Game and would highly recommend it to anyone,

In June we managed to go on holiday to Blackpool. I’d booked a holiday at a Haven holiday camp in Devon last year before I got sick. I knew that I wouldn’t make it so I rang them and they suggested that rather than cancel I could book another campsite that was easier to get to and was  relatively flat for my wheelchair. So we chose Blackpool. It was a great break but a very different experience. Looking back I don’t know how we did it, but we did and we had a lovely break away. We also got to see Blackpool Circus at the Tower which is a great bonus, and they are wheelchair friendly.

Of course June was also the time of the referendum when we voted on whether our Country should stay or leave the European Union. We were a country divided on the whole debate and many friends and family argued over their opinions. The decision was made and a new word, Brexit, was added to the dictionary.

Then July comes along and the weather brightens up, well apart from school sports day when it’s almost guaranteed to rain..well it has done for us for the past three years. This year the end of school for the summer was a little more special for us as it was Star’s last year in primary school.
At then end of July it’s Boo’s birthday and this year she was nine. I normally do wonderfully executed parties with every little detail thought of, but this year it was different as I was disabled. I had no idea how I would cope with a lot of young excited children running around. I decided to keep it small and let Boo invite just a few friends to do some arts and crafts and enjoy the food and cake. It went really well and more importantly, Boo had a fantastic day.

Summer time, and in July we did, well, not a lot. I was still immobile and finding it difficult to come to terms with it. We had no transport of our own and public transport was a nightmare. We did have a fabulous day out at Hatton Adventure Farm though, to test out their new Water World feature.   Also, in August we have both The Little Man and Stars birthday’s. The Little Man had a Minecraft Birthday party. Being the youngest I knew that his guests would be accompanied by a parent so I didn’t mind inviting a few more as I wouldn’t be in sole charge of them. I managed a few Minecraft themed activities. The photo booth was a big success as was his Sword in the Cake. I think he enjoyed his birthday.

Star doesn’t like birthday parties so we did the same thing we do every year and take her to Pizza Hut and Build a Bear. She also spent some time at her new secondary school which she loved and she was so excited about attending in September.

September was really busy so brace yourself… First up I got my new car and had to learn how to drive using my hands rather than my feet. It was pretty terrifying at first but I soon got used to it. September was also Transverse Myelitis Awareness Month so I was giving a lot of thought to my condition and how it was affecting me and my family. At one point I became worried that my being disabled now would ruin my kid’s childhood so I gave it some thought and came up with Ten Steps to Giving Your Kids a Happy Childhood. There are many ways you can make childhood happy and it’s the simple things that they remember most.

Although it started in August, September was the Great British Bake Off week, and I have to admit I’m totally addicted and have to bake along with the show every week. This is my bread week effort which I was really pleased with. 

Also in September it was the MAD blog awards in which I was a finalist…thank you again.
I was concerned because I knew I couldn’t make it to London and the awards by myself so I asked my partner to come with me, and he was then invited to join in the celebrations too. I was so grateful for this because although it looks like I’m managing to cope, I’m a very good actress and would probably fall apart if it wasn’t for my partner’s support. Anyway, we made it, the awards were fantastic and I got to meet Helen Lederer, who was lovely. Unfortunately I didn’t win, but I never expect to, there are far too many excellent blogs out there. It’s a fabulous experience though. 

So September was a full and exciting month. Along with all the ups I did get down thinking about how my life had changed because of my condition. If you are interested in reading more you can find all my posts under the Transverse Myelitis tab at the top of this page.

October was busy on Raisie Bay because I took part in Blogtober where you were asked to write a blog post each day on a pre-chosen category. I didn’t manage every single day but I do have 34 posts for October! If you want to check out one of my Blogtober posts how about this one…One Thing I Can’t Live Without.

At half term we had a fantastic day out at Brick Live. We got to meet up with some lovely bloggers while there and also had the premier viewing of the Lego Scooby Doo Haunted Hollywood movie.

Onto November and first up we were having some problems with Star at her new school. She was being bullied by some boys in her year. They hadn’t hurt her but where threatening to do so and she was really scared. We managed to talk to the school and eventually the problem was solved. Within just a few weeks she was really happy again and enjoying school. 
I also got to review the Hoxton Street Monster Supplies cookbooks which I loved, my favourite recipe was the Night Terror Torte which was absolutely delicious. I also made these adorable Toe Nail Dusted Sweet Cakes.

Then at the end of November it’s my birthday and although I did receive a few really nice presents and cards the day was overshadowed a bit by a bigger event..I got married! It was the most amazing day and I hadn’t felt so happy in such a long time. I even walked down the aisle with the help of my brother. 
Then along came December and suddenly the year felt as though it had flown by. I’d had so much to get used to this year and as the anniversary of my illness approaches I’ve started to feel very low. At first I thought it would take weeks to get better, then I resigned myself to months. Now, I’ve had to accept that it’s going to take years, one year has passed already. To stop myself from feeling low I look back at all the things I’ve achieved this year and that’s what this post has been about. My blog is my tool for recording my life and although it doesn’t contain every little detail, it does give me a perspective on what I’ve done and where I’ve been. To me it seems like I’ve climbed mountains, and I can hold on to that and hope that one day I’ll be able to do even more. 
Thank you for reading this far and for sharing my year with me. I’d like to leave you with one more post, our Christmas day out visiting Hatton’s Winter Wonderland. We had such a lovely day and we also had a lovely Christmas.
I’d like to take this opportunity to wish all my readers a very Happy New Year. Life always has it’s ups and downs but you only get one chance at it so be the very best you can. Smile as much as possible and offer your kindness to others, be happy. xxx 
I’m desperate for just a few more subsrcibers on my You Tube channel to make it up to 100, I’d love to have you on board. 

My Highs and Lows of 2014

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I have already made my post reminiscing about the past year and I was going to do one about what I’m looking forward to in 2015. Then Jeanette from AutismMumma tagged me to write this post and I will give it a go.

1. What was your happiest event?

Ok, there was a few, which is nice to realise considering it was such a stressful year. If I had to pick one it would be my friends wedding in May. She asked me to make her cake which was a huge privilege, but not only that, the whole day was purely magical, just as weddings should be. The weather was glorious and the venue amazing and from beginning to end we had wonderful day. Definitely a happy event to remember.

2.What was the Saddest thing to happen?

Our most devastating moment was discovering in March that Star’s first operation hadn’t worked and that she was going to have to endure major surgery. We spent a lot of time in the hospital over the year but despite our own ups and downs we couldn’t help feeling a part of the other children’s lives too. So, in reality, the saddest moment had to be when the little girl in the next bed didn’t pull through. There was not a dry eye on the ward that day.

3. What was the most unlikely thing to happen that you went ahead and did?

This is a tough one because I rarely venture out of my comfort zone and doing unlikely things is just not in my nature. Maybe that’s something I could push myself to do next year, could it be time to change habits of a lifetime?

4. Who Let you down?

This would have to be Star’s first consultant. He wouldn’t listen to me at first, thinking that Star’s problems where not as they seemed. He thought out a plan of treatment that may have worked if he’d gone ahead but he changed his mind at the last minute. Then he sent her home and forgot about her, taking her over the threshold for successful treatment. If I’m honest, it was no surprise that the first operations hadn’t worked. I’d done my research and knew it was unlikely to work because it hadn’t been performed soon enough. 

5.Who Supported You?

Oh wow! We have all received so much support for our family this past year, it’s been totally amazing. From letters and cards, gifts, lifts, advice, prayers and just general support. There have been some amazing people in our lives. If I had to give a special mention it would be to our friend Julie. We’ve not known her long but the support she has given us has been really special, particularly just talking to me and my partner when we totally stressed, and helping with Star’s problems by providing us with alternatives to drugs. So thank you to everyone, and especially Julie xxx

6. Tell us what you learned.

It doesn’t matter how bad things get, it’s still possible to survive and to be happy.

7. Tell us what made you laugh.

Thankfully, there is always laughter, most of my comes from my children. I love the way Star has a sense of humour even in the most difficult of times. I love the way Boo gets words mixed up, she has us in stitches. Then there is the Little Man who can be right little comedian (when he’s not being a little monster)

8. Tell us things that made you cry

I’ve cried lots this year. It’s so hard when you have a poorly child. Each time she went under the anaesthetic in the theatre the nurses where there with the tissues ready. Then there were tears of relief as she came around again. The worst times were when we’d changed duties at the hospital and I was home alone, that’s when you have time to think.

9. Tell us three things your children did to make you feel proud

The Little Man started school for the first time this year. He has settled wonderfully and works hard.
Boo has joined the choir and made me so proud when I saw her singing in the school concert just before Christmas.
Star has made me proud just by getting through everything she has had to endure with a smile.

10. Tell us the things that made you proud about yourself

I felt proud when I stood up to the hospital and told them that I wasn’t happy with the treatment that Star was receiving. Everything changed once I spoke out and her treatment was much improved. I’m not normally the type to complain, but this was my daughter’s health and wellbeing so I had to do something.

11.Tell us the challenges you overcame

My biggest challenge was waiting the seven hours that Star was in surgery. It was really difficult and I don’t know how I held myself together. I’ve faced other challenges this year too, some still ongoing, but I’m not ready to talk about them yet.


12. Tell us the things you’d like to change about your life in 2015

2015 is going to be different. Soon, I will have all three children in full time school, I’ve not experienced that before. So, I’m going to spend more time doing things I’ve always wanted to do. I really want to do a course or two, I’m not sure what in yet, maybe I will find something I’ve not studied before, or maybe I will do something I’d really like to improve like my cake decorating or photography. I’d also like to do more walking or maybe take up some form of gentle exercise. 
I’m determined to be more positive this year, it’s easy to start feeling like giving up as you get older and begin to think that your dreams might never happen, but age is just a number and dreams can happen at any time. 
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I’m not going to tag anyone in this post, but please feel free to do one yourself if you wish, and if you do then please let me know so I can see your answers too.
This meme orginated with Kate on Thin Ice

My Television Moments

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My television habits have changed so much over the years. I used to be a complete addict, I would turn down outings and nights out if it clashed with my favourite tv program. There was always the option of making a recording if absolutely necessary. That’s if I felt confident enough to set the VCR (remember them?)

I would leave my job at lunch time and rush home to catch my favourite soaps, while rushing a quick snack and running back to work. Good job I lived in the same street as the place I worked. 
In the evening I would rush the kids off to bed and then make a quick cuppa and settle down to watch tv until bedtime. I’d be annoyed if anyone turned up to visit or called me on the phone.
The kids tv was only on at set times, there were no all day channels. I would let them watch videos at the weekend if they wanted to. 

 I’ve just done a quiz on Talk Talk about Tv Tribes and the tribe I now belong to is:

T h e    C o m p l i a n t
I tend to watch whatever my other half or housemates watch. I don’t really mind what’s on, and even if it’s something I don’t want to watch, I don’t get much say in the matter. I will often be doing other things in the same room while they have the TV on. I will either be browsing the internet while the TV is on, doing housework, or pursuing one of my hobbies.
9% of people belong to this TV Tribe

This is accurate of me now, see what I mean about changing habits. I barely watch any tv at all. I have long lost my addiction to soaps and when I was once glued to all reality tv shows, now I just don’t bother. I don’t know where the tv remote is half the time. I let the others watch whatever they want, with my other half it’s usually football (or snooker, or tennis, or cricket, or …you get the idea, right?) I let the kids have their channels on if they want, I’m only slightly sick of Peppa Pig after 8 years.

There are times, however, that I do like to chill out and watch some television. Mostly, it’s at the weekend, after the kids have gone to bed.  I like a good drama, or a film, or even a documentary.

Every Friday evening I spend some time with Eldest Daughter watching tv. She usually spends most of her time at home up in her room, so we use this time to catch up and spend time together without her little siblings around. Our current favourite program is The Walking Dead.

Then on Saturday, I like to watch a film or something with the Other Half. I’ll let you into a little (not so secret) secret though. He is awful to watch tv with, he talks constantly, trying to figure out what is going to happen next, or solving the crime, or guessing a relationship..anything really, so long as he’s talking. He drives me bonkers!

Perfect TV Moments of the Past

There have been a few perfect tv moments in my past.

My Dad passed away when I was only eight but I remember watching his favourite program with him, Doctor Who. I was really scared, but Daddy was always there to protect me from the Daleks and Cybermen and other aliens that might invade our home.

When Prince Charles and Lady Diana got married back in 1981, I was staying at my older brother’s house and we all watched the wedding on tv before going outside to celebrate with a BBQ. It was magical watching Diana become a beautiful princess.

We all sat down as a family to watch the opening of the London Olympics in 2012. What a fantastic moment, how I wished we could have been there. Watching on TV was the next best thing, at least you always get a good view of these events on TV.

Now I’m not a huge sports fan but who could have missed Andy Murray winning  wimbledon and being the first mens champion for 77 years. A truly momentous TV moment.

Our perfect TV moment now is on New Years Eve, one of the rare occasions when we all sit and watch tv together, yes, all seven of us. We bring out the nibbles and the grown-ups crack open a bottle (or two) of Baileys and we settle down to watch a family movie. We don’t like to party on New Years Eve, we keep the evening as a family only time, saying goodbye to the year that was and welcoming the new. After the movie we may watch a interactive quiz show and the fun continues with more grown-up movies after the little ones have gone to bed. (last New Years Eve it was Hot Fuzz!) We always welcome in the New Year watching Jools Holland’s Hootananny.

It would make our TV moments even more special if we had a bigger TV. Last year we moved from a tiny house to a large one and our old TV looks lost sitting in the corner. This is why I’m writing this as my entry to Tots100 and Talk Talk TV Moments competition. Why don’t you enter too?

Happy New Year!

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As the end of the year approaches it’s time to reflect on what has passed and look forward to the year to come. I know that this time last year I had no idea that I would be where I am now, in a brand new home, having so much that I could only dream of before. Life had become very difficult in our old home, and although I loved the area and our neighbours, and the kids school, I longed to have somewhere bigger to live. We were really overcrowded and stress levels were high. Sleep was a word no longer in my vocabulary because it’s hard to sleep in a house that is always awake. And no matter how I tried to make the house nicer nothing really worked. It was too small, and we had way too much stuff, too much clutter. I had to cook dinner in ’rounds’ because my kitchen was too small to cook for seven people at the same time. Things are so different now, I still can’t quite believe it. Of course moving house wasn’t easy, in fact I hated every moment of the actual move, it was my worst nightmare come true. I really would be happy to never have to move ever again. Then there were problems finding a school for the littlies, so many of the local schools just didn’t have places for all three of them, but we got there in the end.

Back in February my Little Man went for his very first haircut. This was a momentous moment as I’d allowed his curly blonde locks to grow really long and having them chopped off completely changed his appearance. Then in March we were invited to a press event for Start-Rite Shoes where the Little Man took to the Catwalk.

We’ve had some lovely days out in our home town, most memorable being our trips to see A Squash and a Squeeze at Gas Hall, Room on the Broom at the Town Hall and last week we went to see What the Ladybird Heard.

The year also had some very lovely surprises and treats. I was nominated for a MAD Blog award and actually reached the finals. I still can’t quite believe that. This meant we had a wonderful trip to Legoland as a family which we really enjoyed and of course I got to attend the finals at the Royal Kensington Gardens Hotel. We also had a fantastic holiday at Center Parcs as I was chosen as a Center Parcs Family Blogger, and I also won a fabulous break in Blackpool with my recreation of Blackpool Tower in cake.

So there is so much good I have to look back on, but there always has to be bad too and that comes in the form of my precious little Star managing to slip a disc in her neck causing many months of pain and discomfort and resulting in a manipulation and the dreadful halo collar which she is still wearing. 
So what am I looking forward to in 2014? First up has to be the removal of Star’s halo and having her finally fixed and pain free. I’m also looking forward to a new stage in my life as all three of my littlies will, eventually, be in school full time. Will I find a job? I’ve been missing work for a long time now, but my children come first so I’ve held off until the time is right. My dream is for all the adults in our home to be working by the end of next year. My daughter is doing really well in her new job, my son is taking some time out from his studies but will soon be looking for some work experience so he can continue with his chosen career choice. My other half has had trouble finding work since he lost his last job on medical grounds (he failed a hearing test) so it would be brilliant if something came his way. I don’t really know what I will do, it’s been a long time since I had a job. I better start working on my CV.