Well, it's the second week in January 2025!, how has that happened? I seem to have had a sleep on Christmas Eve and woken up in January. Ben and I have had a lovely if quiet Christmas, we also had our usual in bed before midnight on New Year's Eve. Surprisingly we weren't kept awake by endless fireworks, something to be grateful for!

We actually haven't been out since last Saturday choosing to stay at home in the warm. what with torrential rain, gales, snow, sleet and ice (and every variable in between) we've chosen to enjoy reading, playing games journaling, crafting and binge watching some lovely box sets on TV. 

Shortly before Christmas we had new neighbours move into the apartment next door, we have already become good friends and have enjoyed several visits next door for coffee, cake and chats. Ben is really looking forward to his groups starting again at the DSC Hub in Northwich, this weeks session was cancelled because of the awful weather conditions.

 As you may have already deduced i have not much of great import to share in this blog, to be entirely honest I am trying to get to grips with my somewhat updated laptop and break through the barrier preventing me from putting words on a page. This year we chose not to make new year "revolutions" as Ben calls them, or set ridiculous and usually unattainable challenges. We felt led to a word to lead us through this year, "enJOY", we are going to consciously and intentionally look for the joy in the every day,  the mundane, the little daily miracles that we so often miss in the hustle and bustle of life. then we are going to enjoy them and put them in a JOY JAR..

Sunrises, sunsets, cloud formations the first buds bursting through, that first cup of coffee, an unexpected message from a friend, a delicious meal, the feel of clean sheets, a hot shower...so many "little" things that we can so easily take for granted. Let's face it, we are living in turbulent, worrying, frightening, even dangerous times, there seems to be a never ending cycle of bad news so lets, when we can, stop, take pause and hold tight to the little moments of beauty, love and hope.

My prayer is for us all to find shelter in the small moments, to find moments of peace and hope, and in these moments to find the strength to stand against the darkness that sometimes feels overwhelming 

 

Fun and friends

 

It’s another Monday morning, and another morning at the Down Syndrome Cheshire Hub in Northwich. Suffice it to say Ben starts counting down the days from the moment we leave for home. This place is definitely his happy place. 

This morning Ben and three of his friends have gone out for the morning with two of the amazing volunteers who work with them every week and a member of staff. Ben assures me they are working, going to the library, shopping for the ingredients for the meal they will be cooking for everyone next week and then stopping for a coffee (I did hear the word cake mentioned!)

In computer terms a hub is (and I quote) “a small rectangular, inexpensive device that joins multiple devices, its purpose is to form a single network whereby all devices can communicate directly with each other.”

The DSC HUb is this in human form, and so much more. First and foremost it is a place where anyone with Down Syndrome from new born to infinity can come and feel welcome, safe, valued, respected and loved. It is a place where friendships are forged and skills and abilities are recognised and encouraged.

It is also a centre of excellence in terms of being a place people can turn to for support, information, advice and understanding. There are regular sessions involving external agencies which people can attend about issues specific to and of interest to them whether it be speech and language therapy, educational provision or planning for the future.

For Ben and the many new friends he has made it is place where he has fun (with bells on) where he learns new skills and where he has opportunities to excel, (his gift of the gab has been noted! There is a huge variety of sessions and activities  which meet the interests of all ages and abilities and make it possible for families to enjoy activities together.

It is also a place where we can learn from our young people. The encouragement and appreciation they show to one another is humbling, they never miss an opportunity to praise one another for any achievement and are genuinely delighted in one another’s successes, talents and victories.

We are so very fortunate to have this amazing charity in our midst, they are a shining example of what can be achieved with a shared vision, a shared passion and a shared heart to work for the people they care about so much, all I can say is thank you, format the bottom of my heart  

Times they are a changing

Above is a little pastiche of my son Ben, ranging form seven months to about twenty nine years of age.

This is the most current photo I have of Ben, aged thirty three (nearly thirty four I can hear him shout!)

It's fair to say he's changed a bit but I think anyone who knew him years ago would still recognise him. From the day I brought him home from his foster Mum in Bath on December 4th 1990 I can say without fear of being accused of exaggeration that he has enriched my life. Not to say he hasn't aged me way beyond the thirty four years we've been together, and I certainly blame him for my head of pure white hair!

This selfie (not really part of my skill set) was taken yesterday as we prepared to watch the final of the Euros. We're still smiling and still I'm happy to say enjoy each others company. He's been responsible for many, many sleepless nights over the years for a variety of reasons but has also been (and still is) responsible for much laughter. It's rather like living with the cast of thousands from an old Cecil B De Mille film (showing my age!) his ability to throw together a costume and assume the identity of a film or TV character just from his wardrobe (and occasionally mine) is amazing. There have been so many dramatic entrances to our living room, unannounced but if he has disappeared for five minutes with talking then I can be fairly sure I'm about to receive a visitation.

When we finally ventured out after the covid restrictions lifted life had moved on without us, or so it seemed. I have to admit I had erred on the side of over caution, in fact we pretty much stayed in isolation for around eighteen months. (mind you, neither of us have had covid...so far) we had lost touch with many of the groups and activities we used to be involved with so life was fairly quiet. In around September 2023 we found our way to Down Syndrome Cheshire in Northwich.

Life has changed! Ben has found a place where he has made some wonderful friends, found a place where he shines and is accepted and where his gift of the gab has been recognised and utilised! He is now Chairman of the I Choose Board which meets twice a month and is a forum for adults (from 18+) to have a voice and express their hopes, choices, worries and expectations. He's been to 10 Downing Street!

He's a regular contributor to the new That Down Syndrome Podcast (I may have to change my name) and he's finally decided he quite likes having a go at some cooking and baking. He works alongside amazing volunteers and some of his peers on Monday mornings, at the DSC Hub, he's really enjoying painting some concrete planters for their garden project at the moment and he and his friends have planned the project and worked out the budget with the assistance of Julia and Colin. Another favourite activity is when they choose a meal to cook for everybody, they choose their recipe, budget, shop then finally at the end of the month they cook.

I can't praise or thank this truly amazing charity enough, they've brightened our weeks and we both feel so welcome and cared for. Ben is so happy that he decided he wanted to do a fundraiser as a gesture of his gratefulness so Monday July 8th he began his sponsored cycle challenge. 21 minutes every day for three weeks. (I'll explain the significance of the numbers next time.

Not my usual style of blog but I just wanted to find a way to share this incredible group of people, you can follow them on Facebook at Down Syndrome Cheshire and the website has the same title. I'm off now to inspect todays painting, not sure how much Ben has got on to the planters as he's just walked past and he is covered in magnolia paint! 

 

 

 

 

 

 

 

 

  

On a roll

If any one has read any of my past wordy rambles through life you will be aware that technology and I are not friends! I sometimes think I may actually be allergic to all things computer. I remember fondly the days when you simply turned something on and it would work, no fuss, no emotional meltdowns, no need to follow 300 pages of instructions and enter and re-enter long lines of letters, numbers, and symbols reminiscent pf the value of Pi!

The fountain pens above remain and always will remain my favourite method of transferring the words from my head on to paper. I'm fortunate that my handwriting is generally quite neat and legible but the thing I like most is that when I write by hand I tend to spell things correctly and punctuate correctly. Keyboards are my mortal enemy, I detest predictive text (though I must confess the randomness of its suggestions can sometimes be the cause of great hilarity) I am by no means a good typist, I didn't do typing at school and I've never mastered  using a keyboard ( and I sincerely doubt I ever will) It takes me so much longer to type anything because I have to keep going back to edit when I see a missed capital letter or a spelling mistake, it slows me down and interrupts my somewhat butterfly thoughts.

My dislike of technology is not purely for computers, though when I think about it pretty much everything we use on a day to day basis is computer based. We recently got a new TV as the old one could no longer synchronise sound and image, quite entertaining for a while but not good for any length of time. Honestly you need a degree in computer sciences to even switch the wretched thing on! Once you have actually managed to link it to your broadband etc you then have to download channels, you have to sign in to access anything, you have to have a password, for some sites it is absolutely impossible as the screens don't do what they're supposed to do, add to that navigating everything, very often you get to the end and press yes or whatever and it goes back to the beginning!                     
i have to confess (again) that much as I enjoy the vast range of channels, apps like Spotify, You Tube and such like I sometimes hanker for the simplicity of my childhood, limited hours, three channels, if you missed a programme you missed it  (and the world didn't end) and you got your steps in getting up to change the channels. My final rant against all things computer techy relates to how many simple activities can no longer be done in person, pretty much everything has to be done on line from driving licences to passports and all things in between. I am relatively intelligent and I can with, luck turn  my computer on but I find myself overwhelmed with the demands of on line form filling.

I wonder what would (will) happen on the day when technology crashes completely, no access to money, no way to pay, no access to medical records, the list goes on, bring back pen and paper I say, at least as an alternative to the dreaded technology!

 

It’s been a while…

 

It’s taken me about twenty five minutes to sign in so far, and it’s been a while as the website reminded me! Life has moved on and is pretty much back to normal or what passes for normal for Ben and I. We’re busy again, some with the Salvation Army as of old but more with Down Syndrome Cheshire, an amazing local charity that entered our lives around October

Ben has thrown himself into everything on offer with enthusiasm and delight, his highlight (so far) being a visit to 10 Downing Street on March 21st this year, World Down Syndrome Day. He’s also attended a charity awards night (and three course dinner!) given a speech at our Annual General Meeting and is chairman of the I Choose board. 

If you know Ben personally he will no doubt have told you (more than once) that he will very soon be celebrating his 34th birthday! (How’s that happened?) He’s looking forward to bowling with some friends from DSC then  a trip to the Shire horse centre followed by a night at a hotel, evening meal and full English breakfast in the morning. (I mention these details as they are very high on Ben’s criteria for a good day!)

This is just a tentative, toe dipping attempt into getting myself back into writing again. I have a few techy hurdles to overcome with such things as emails on my iPad and other such trivia but I’m hoping to get myself sorted and a little more proactive and productive in the coming weeks. Watch this space…

Happiness is...

 Happiness is...many things, different things, it sometimes feel tantalisingly out of reach; often fragile and transient. It is very different from joy, happiness tends (in my opinion) to be more dependant on circumstances, people, places, and it changes over time, what made us happy as a child may not be where we find our happiness as an adult.

My happiness comes from all things stationery and book related, I am most definitely not safe to be left unsupervised in either a book shop or a stationery shop. My delight in beautiful fountain pens, gorgeous notebooks and journals, coloured pens, pencils, pencil cases, journaling ephemera, stickers and  washie tape is at best childlike!

It is an obsession I have inadvertently passed on to Ben, my son. We could stock an average sized shop between us (not that we would ever be able to sell any of our precious goodies) we both spend many happy hours colouring, writing, reading and journaling. During the first lengthy covid lockdown I began keeping a daily journal and over the course of the next two years filled three journals with daily accounts, photos, sketches, collages, stories, poems and hopes and fears. They are like old friends now, bulging in their collection of memories of an extraordinary time in our lives.

Music, dancing, nature, gardens, family, friends, food, all these can bring happiness, what makes one person happy may be of little importance to another. indeed, what makes one person happy can actually be an irritation to someone else, Ben is at his happiest while he is colouring and listening to musicals, his enthusiasm is delightful, his singing along with gusto not so much.

Happiness does not need to cost a fortune, it can be found in the little unexpected or surprising events of the day to day. The sudden glory of  a rainbow filling the sky, the appearance of an inquisitive little blue tit on our balcony, the smell of our evening meal escaping from the slow cooker, a tiny ladybird on a leaf, the incredible detail in the smallest flower, the sound of a friends voice on the phone, or a new box of crayons!

We may not be living the life we hoped for or dreamed of, we may be in the middle of circumstances which are crushing, hurting, overwhelming;  happiness may seem an unattainable, even inappropriate response but if we can just keep our eyes, ears, minds and hearts open to the little things perhaps, just perhaps we may still suddenly find the darkness lightened , momentarily.

I've decided that Ben and I are going to start a happiness journal from now to Christmas, every day we will jot down one thing from the day which made us happy, maybe on the days when we are struggling with life we can look through these and be reminded of the good things that happen even on the dark days.

     

It’s been a while!

 

Hello! It’s been a while! I think I can say without fear of being accused of exaggeration that quite a lot has changed since I last wrote a blog. A global pandemic…who’d have thought?

Ben and went into lockdown on March 16th 2020 along with much of the world, we had to quickly negotiate the world of online shopping (not something I’d ever really done) and I had to hone my tech skills rapidly as I’m the sort of person who can order a match box and end up with a garden shed, or vice versa!

We stayed at home for close on eighteen months with only the occasional early morning ninja trip out for a coffee, or a visit to get vaccinated. We grew used to staying at home and found ways to keep ourselves healthy, happy and entertained.

We planned a virtual weekend away at the seaside, and even went on a virtual holiday to Amsterdam, boat trip and cycle ride included! We watched far too much TV, journaled, listened to music, had craft sessions discovered the joys (and tribulations) of Zoom, and moved most of our furniture around several times ( much to Bens dismay) 

We’ve danced in the rain on our balcony, had film nights sleeping in the living room and have been blessed by FaceTimes, WhatsApp chats and phone calls. Unfortunately, the only skill I acquired during this time is the ability to bake, rather well! The cakes, biscuits, muffins and cookies have I admit been delicious but the damage to our hard earned slimmer selves has been significant! We’ve vicariously enjoyed following friends holidays at home and abroad through photos and videos until, finally…

…In June 2022 we finally went on a little two nights away holiday of our own in a Hobbit Hole! It was short but we packed a lot into our days and were blessed  by absolutely superb weather.

We’re now venturing out and about and have enjoyed a couple of birthday gatherings, DEN (our Bible Journaling group) and Cafe Church, we’ve had lots of coffee dates and the odd breakfast out, all greatly enjoyed. We remain slightly cautious choosing to wear our masks and not meeting with others in crowded indoor spaces. All in all the last two and a half years have treated us well, we’ve stayed busy in our own way and have been blessed by all those many people who worked so tirelessly to keep us safe.

We were not stuck at home, we were fortunate enough to be able to stay at home, and blessed to have a lovely home. 

As the world continues to go “back to normal” (whatever that was) I hope we can hold on to some of the lessons we learned, particularly relating to those people who have been housebound for years for whatever reason. All of a sudden, church, theatre, cinema became accessible for most people (technology permitting) I wonder now how many  of these services will be discontinued now that the general population can once again go out and about, the isolated, unwell, lonely forgotten once again?