If you have followed my blog for a long time, you will have heard about my extended family.

Back in the late 1930’s my maternal grandparents got married in Leicester. Little did they know how their life was going to pan out.

Grandad Henry and Granma Florrie ended up having 5 children (to my knowledge) but only 4 lived beyond childhood. Gavin, Gwen, my Mum and Albert. Out of them all, only Mum was the only one not exhibiting ‘issues’.

By that, I mean all of her siblings were affected by a condition called Fragile X

Fragile X is a chromosomal defect that causes learning difficulties, mental and physical impairments and more. Boys are always more affected due to them only having one X chromosome. Women have two X chromosomes so usually the issues are not as profound.

By the time Mum was 21, both her parents were dead and Gwen had married a gentleman (Fred) who was a slow learner. They had a child called Diverus who was also affected very badly.

When Fred moved into the family house, his younger brother Ian (also learning difficulties) was left an orphan at 12, so he joined the family group.

Mum now had a husband and five people all with various deficiencies. The year was 1964 and social services didn’t really exist and you just ‘got on with it’, looking after family yourself.

So, she did.

Going through the list, the oldest was Gavin.

For Gavin, he was the worst affected; blind, partially deaf, learning difficulties, speech impediment and more. He was a gentle giant though and loved going to Church every week. I had a special bond with him as I was born on his birthday, 4th July. He loved the song ‘You Are My Sunshine’ and would sing along (in his way). Even now, when I hear that song it reduces me to tears.

Gavin died when I was 11 and it broke my heart.

He was so kind, gentle and childlike and I was angry and confused when he died suddenly. Why would God allow that to happen to one of his devoted followers? I eventually realised that if I was God, I would want gentle child-like angels all around me and Gavin was one of those.

Gwen and I also had a very special bond.

By the time 1974 rolled around and I was born, Mum had been looking after the family for around 10 years. She really had her hands full looking after everyone and so I used to go to Auntie Gwen when I needed help or anything, really.

Because females are not as badly affected, Gwen could cook, clean and go shopping for food but she couldn’t read or write. She had married, had a son and helped Mum run the household.

And she pretty much raised me.

I have spoken about Auntie Gwen before; Saturday afternoons watching musicals on the telly, eating bags of chewing nuts, sweet peanuts and cough candy sweets. Bottles of cream soda and cherryade were consumed as we sang along to all the famous songs.

I adored her and when she died, I was just 16 and in the flush of my first romance. She had cancer and died within two months of being diagnosed. I was bereft and felt like my world was ending when she left me.

Mum was the only child completely unaffected by Fragile X. It turns out now that much more is known about it, that she is a carrier (as am I) so we haven’t got away with it completely.

Of course, when Mum was pregnant with me, there wasn’t any kind of tests that could be done to say whether I was affected by the defect or not. It was a simple case of getting pregnant, giving birth and then waiting until after 12 – 18 months to see what kind of developmental delays I may have (if any) and then dealing with it then.

Thankfully apart from being a carrier, I was fine, although that could be debatable!

Albert came along after Mum and he too was affected. Unable to read or write and with learning delays, he grew up a happy lad and spent a lot of time with Gavin. He used to spend a lot of time in the garden, cultivating his plants and making sure there were no weeds in sight.

Now he is in his 70’s and watching old films and listening to music is his passion. Mrs Brown’s Boys is a particular favourite and he can often be heard cackling away whilst watching the DVD’s on repeat.

Mum’s nephew (Gwen and Fred’s son) Diverus is badly affected by the condition. Autistic and with a mental age of 5, he cannot read or write but has a huge knowledge of music from the 50’s to the 70’s.

If a song comes on the radio he will usually know all the words, tell you who sang it and what year it was released. He can usually tell you of any other artists that have sung it too!

How he has absorbed all this knowledge is mind blowing and people have literally been amazed by the info that comes out of his mouth, given that he is deemed to be “mentally handicapped”

So, where exactly am I going with this?

Well, Mum is now 80 years old, siblings have passed and there is just Albert and Diverus at the house. I have always known that at some point, I would have to return back to my childhood home and take care of the family.

Given that Mum has looked after everyone since she was 21 and I am now 48, I have got ‘away’ with for quite a long time now. But that time is now over.

Mum has been quite unwell in recent years and was admitted to hospital on the 17th February.

Without going into too many details, I was called up to the hospital on the night of her admission to say my goodbyes. They literally didn’t expect her to make it through 24 hours.

I am thankful to say that she did and she is still fighting, 7 weeks later.

The day she was admitted I packed a suitcase and moved back to my childhood bedroom. Albert and Diverus cannot be left alone; they cannot run a household or buy the shopping.

They do not understand money and wouldn’t be able to pay a bill.

So I need to be there to do for them, as my Mum has. It is not a hardship or an imposition, in fact it is a privilege to carry the mantle that she has done.

Of course, I still have a household myself and a full time job. There are simply NOT enough hours in the day to fit everything in.

And that is the purpose of this blog.

To explain the shortage of blogs and social media posts, both recently and to come. Simply put, I have too much to do within the day and when I go up to my room in the evening, all I can do is climb into bed and crash.

This means I am fitting in a couple of paragraphs here and there, never completing a full blog. This is having an effect on my mental health but the flip side of taking care of those who need me, makes up for that in a huge way.

One other point I need to address is that this blog is NOT written to elicit any kind of sympathy;  it is purely to explain the lack of posting and content. I am happy with my ‘lot in life’ and don’t need anyone to feel sorry for me.

Family is Everything!

I know that there may be people who may be affected by this post, for whatever reason. If you feel the need to talk, or ask anything about Fragile X, then please feel free to email me and I will do my best.

Till next time,

SPSG xxx