I guess this week has been dominated by the Christening of my husband, friend and her two little boys. I was asked to be the boys Godmother and my husband their Godfather. However, we had to be christened ourselves to take this role and my hubby wasn’t, that’s why he was Christened at the same time.

I am a person of faith, but I’ve not attended church regularly since we moved house. Before I was a member of a church family for years and I always felt comfort in my faith and my other family. When you are part of a community church there is always someone to turn to.

I was overjoyed to be asked to be a Godmother to my friends boys, this is the first time anyone has asked me. The boys are aged 8 and 1 years and I met them when my Little Man was in the same class at school as the 8 year old. Both boys have moved from that school now but we’ve stayed in touch. 

I wanted to give them something for their special day but all the gifts seemed to be aimed at babies. So I made gifts myself.

I’m thinking now that I should have spent a little more time photographing them better! This is my first attempt at anything like this, but I did enjoy making them and they were well received. Their Mum even shared photos on Facebook of the little gift tags I’d made myself and attached to the wrapped frames.

The Christening.

The christening was held in St Nicolas Church which I’ve posted about before as it’s such a beautiful building. 

The service was really nice and my girls seemed to enjoy the hymns very much, singing at the top of their voices.

12th August 2018

The Meatless Carvery

After the service we all went to a local carvery which had been pre-booked. When we all arrived they told us that they were having a problem with the meat and didn’t have much on offer so would offer us a discount on our bill.

They were not wrong, there was a little gammon and some chicken breast on offer. They even bought out a tray of sausages. It was kind of funny, a carvery with no meat! We all managed to fill our plates with a little meat and loads of veggies. Boo was the clever one and ordered spaghetti bolognese! Then we all had desert and waited for the bill. Yes, the food had not been so good but the bill was £57 for 7 adults and 10 children. I guess we couldn’t complain.

My word of the week this week is Christening because it was such a wonderful event. In other news I have been washing and packing because on Friday we will be off on our long awaited holiday to Devon.

Debs Random Writings
The Reading Residence


These days it’s pretty easy to get your story in the news, just go online and submit it and if they like it they will use it. 

It’s a little hard on the self conscious though. Do you really want everyone to know your true story? Will it be published correctly? Will they change it to suit? What will people think?

My Story

Recently, I was approached to tell my story. I was asked, I didn’t put it through my self. I had several telephone conversations with the lady and after she had written my story she read it back to me. I was happy, everything seemed just as I had told.

Then my story was published on the Daily Mail online and will be appearing in a woman’s magazine in print. There was no turning back now. It took me three days to tell anyone, even my husband. Then he posted it on Facebook.

My reaction was to cringe, at the headlines, at the photos. Even though I’d shared the photos before, the thought of more people seeing them made me squirm. The headline made me squirm too.

The Mother of Three that is turning into a ‘Human Statue.’

When the condition, Stiff Person Syndrome, was first discovered, it was found that a common feature was a stiffness that turned it’s sufferers into statues. This seems to have stuck throughout time, although most of us with Stiff Person Syndrome do not see it like this anymore. Many medications have been found that can prevent the condition from progressing to this stage, and some have even found their condition goes into remission. Still, it sounds dramatic doesn’t it?

Many people with Stiff Person Syndrome have spasms which can stiffen parts or all of their body. When I have a spasm I do go stiff, but it’s not board like, I often tend to curl up and I’m unable to straighten again until the spasm passes. This can last anything from a minute to 20 minutes. I also have smaller spasms that affect my feet, hands or legs, sending them stiff. But eventually they relax again.

I do have stiff muscles that never relax in my back, legs and feet. These are what contribute to my inability to walk.

I have to say though, they did manage to stick to the truth, the things I told them. There was a little sensationalism thanks to the highlighted headlines, not anything I’d not said.

The Reason for Sharing.

My main reason for sharing my story is to raise awareness. I’ve recently become part of a small group of Stiff Person Syndrome sufferers that are trying to make our condition more widely known. Very few doctors or medical professionals have heard of the condition. Even fewer general members of the public. With awareness comes better diagnosis and treatment. And maybe even one day a cure.

I’m doing a little research myself and I’ve already noticed that those with paroneoplastic Stiff Person Syndrome have responded to a particular chemotherapy drug. SPS can be a side effect of cancer, and when the cancer is treated, the symptoms of SPS are resolved too. Maybe, in the future, the drug could be tested on other SPS patients to see if it makes their symptoms go away too. It’s just my theory for now, but who knows what could happen. 

So, as cringy as I find it, my story needs to be told, as do many others. One day maybe lots of people will have heard of SPS and treatment will become readily available. 

Reactions to My Story

I was surprised at how little many of my friends knew about my story and my condition. I guess, I must not overshare as I’d originally thought (or was led to believe.) I don’t want sympathy, but what about my family? Maybe they deserve a little sympathy for what they are going through. I hate my children seeing me sick, I’ve become an expert at hiding my pain and my feelings. My husband is more observant and is constantly asking me how I am doing. It’s good to know that people care, but I also find it awkward. 

Now that I have been forced to look at the bigger picture though, my feelings have been put aside. Yes, I may feel embarrassed but if my story helps to raise awareness then I will continue to tell it for as long as I am able.

Maybe I should be more honest from now on. I was slated for it recently and it really made me hide back in my shell. But now I don’t care. So what if a few people decide to mock me or ignore me, there is a bigger picture here that I am part of. 

So, here goes, the link to the first article about me as it appears online.

Birmingham Woman is Turning Into a ‘Human Statue’

Lucy At Home UK parenting blogger

Group Hug

Not a brilliant photo, but if a picture could paint a thousand words this one would be one of yelling, screaming, fighting and running around like lunatics. But, at the end of the day when it’s time to leave each other, it’s time for a big group hug.

Friends since they were tiddlers, these three boys got together to celebrate my Little Man’s 8th Birthday. 

Parties

This year, the deal was NO birthday parties and I’m not sure it sunk in with anyone. Boo agreed but asked if her friend could come around for tea, so I agreed and when Graham went to pick her up another little friend who lived in the same street asked to come as well. He couldn’t refuse, so we had two friends for tea. I made pizzas and sausage rolls, crisps, biscuits and birthday cake.

Ditto the Little Man, no party just a friend around for tea, but he wanted two friends, and one of his friends brought his two sisters (who were friends of my two girls.) Never has a ‘not having a party’ looked more like a party before. I did forget to make the jelly though, and we didn’t have party games or activities, I just let them run wild. Really wild.

Minecraft Cake

I also said that I was not going to be making cakes this year. So Boo said ‘Ok, I’ll make my own.’ And she did. She also helped me make a cake for the Little Man. He chose a Minecraft cake and wanted me to do a picture of a villager. It was nowhere near as good as his previous Minecraft cakes, but that didn’t matter.

Minecraft Villager Cake

Birthday Month

From 27th July to 24th August it’s Birthday month in our house. All three of my Little ones have birthdays within 4 weeks of each other. 

Next up it’s Star’s birthday. She doesn’t do parties anyway, so no worries there. Instead we’ll be singing Happy Birthday in car on the motorway on the way home from our holiday. A little error on my behalf, but she doesn’t mind. She’s made me promise to stop off at Burger King on the way home. How can I refuse. That sounds like a party I can handle.

Photalife
Sunday Snap

Day Out

After a fairly chilled out week last week we decided we’d had enough of sitting around and went out for the day on Saturday. Well, I say the day, we actually didn’t leave until after lunch. Two reasons for this, I didn’t want to spend any more money than necessary and the kids didn’t really want to go out. I mean, how cruel of me to drag me away from their electronic devices!

So, we ventured out to a National Trust Property, Baddesley Clinton, which turned out to be only half an hours drive away. It was a gloriously sunny day and it was just so nice to actually get out side in it. It was also really nice to get inside the cool house after five minutes of leaving the air conditioning of the car.

We did spend some time in the garden in the shade though, soaking up enough vitamin D to last us another week.

On Sunday we rested. As you do.

(Well, if you don’t count the washing pile that put Everest to shame, or the Sunday roast I decided to cook, or the bathroom that was definitely in need of a scrub before the round of showering kids scummed it up again.)

Shopping

Then it’s been non-stop. Shopping, baking, doctor visits, dentist appointment, more shopping, even more shopping and barely a moment to snap open a laptop.

If you are wondering why all the shopping wasn’t done in one go then I need to explain. First up there is food shopping which is quite necessary. Then there was birthday card shopping, a total of 10 cards were purchased. Oh, and we decided that it would be a nice idea to visit the toy store so the Little Man could spend his birthday money, and the girls could spend theirs. The joys of having three kids’ birthdays in the space of four weeks! One is ‘the birthday yet to come,’ but as we will be on holiday we let her have some money early, and the other is the ‘birthday past,’ but we kept back some money especially for this spending spree. The Little Man has his birthday this week, ‘the birthday present,’ but we went shopping a couple of days earlier so he didn’t feel so bad about his sisters having presents on his special day.

Oh well, it made sense when I thought it all up.

Then more shopping because I had to go to Hobbycraft for supplies. I have a Christening to go to on Sunday, it’s quite a special one as we are going to be the Godparents. I’ve never been chosen as Godparent before and I wanted to get something special. Only I couldn’t find anything that didn’t break the bank, so I’m making something myself. I’m a bit worried about it now, but I’ve been assured that it looks good. I’ll show it to you later, if you want me too.

So, I guess the word of the week this week has to be Shopping! 

a stylish woman holding up a hoard of shopping bags
Photo by freestocks.org on Unsplash

Debs Random Writings
The Reading Residence

After a chilled out week I was getting a little cabin crazy so I managed to persuade my kids that we needed to go out. Oh no! But what would they do without their screens, their Ds’, laptops, PS4.  Maybe they could take the Ds’ for use in the car on the journey, it was a compromise I was willing to make for a little freedom from these four walls.

Baddesley Clinton

Just a few miles away was a place I’d been longing to visit, Baddesley Clinton.

 

Baddesley Clinton, front courtyard of 15th Century house.

This is the forecourt, isn’t it just delightful. Built in the 16th Century the house has a lot of history. Mostly to do with the hiding of catholic priests in underground tunnels, which are still there. But also it was home to some extraordinary women with some amazing talents and interesting views. I will write more about our visit later, even the kids were glad we left the house and screens behind in the end.

Of course they were thrilled when we first got there as the house is surrounded by a moat!

front of house with a bridge over a moat

Of  course there were plenty of ducks around too, as well as sheep roaming free in the grounds.

The house was really interesting to visit, there was so much to see. The kids did a little trail around the house where they had to find a number of hidden things which they really enjoyed. I couldn’t go upstairs but I was given a virtual tour by iPad (don’t tell the kids!) It looked really interesting and the kids loved it, which is quite surprising because, if I’m honest, they don’t really like being dragged around old buildings.

Telling the Time

Just one more photo for this post. In the middle of the walled garden, instead of swings, which Boo was disappointed about, there was a Sundial. It was almost right, we just need to move the sun a little. This was taken at 3pm. I’d say it was telling us it was 2.30pm

 

Photalife

 

Sunday Snap