The sun always rises in the morning.

It’s been a very VERY long time since our last update, and for that I (as head writer of this here site) must humbly apologise. The reason for this has been two fold:

  1. Life has been absolutely CHUFFING MENTAL of late
  2. In all honesty, I’ve really been struggling recently

It all started towards the end of, what can only be described as, a truly HIDEOUS summer holiday. Now, as a teacher, I look towards the 6 week holiday the way that Paul Hollywood looks towards a plaited loaf – with hunger and an all consuming longing. We had our annual summer tradition ahead – a week away with my lovely parents and J’s lovely parents – and the added bonus of my lovely sister joining us too. Oh, and Baxter the ‘Mexican Pug’ – our family dog. It all started just as it should – hugs, wine and happiness. However. Unbeknown to us, a monster of the darkest order was lurking…

Squidge (a.k.a. Baby Riley… who really isn’t much of a baby now as he’s 2), suffers somewhat with travel sickness. This, is a pain in the ass. Any journey longer than 30 minutes and he blows chunks like the girl from the Exorcist. We have become somewhat adept at managing this now (many MANY muslins, baby wipes and a Bibado Bib*), but it’s still unpleasant for all involved. On our summer holiday journey, he did, as we expected, and managed to regurgitate his lunch all over me and the back of the car. But, we cleaned him up and upon arrival he was his usual mischievous self, and promptly set about trying to ride the dog like a pony. All was well. Or so we thought. About 30 minutes after putting him to bed, we heard him crying and discovered that he had thrown up all over his cot. And so, it began. Every time he laid down, he was sick. It was a LOOOOOOOONG night. The next morning he was a bit brighter, but still being sick. A tummy bug from nursery we thought. We were due to go out for tea that evening to the local pub, but J and I decided to stay with Sicknote, so the others all went and had a jolly time…

Until Grandad Riley brought T home early. He was feeling tired. I sent him up to bed for a lie down and started bathing Squidge. Cue a shout from T’s room… he’d thrown up all over the floor… and then proceeded to throw up every 10 minutes or so for the following 12 hours…

At approximately 2am, I was laid in a double bed with Squidge on a towel (he was still vomming every time he laid down for longer than 5 minutes) and T next to me with a bucket. J had gone downstairs to try to get some rest on the sofa. I was just nodding off, when I heard an almighty ruckus from across the landing…

I opened the door to find my Father-In-Law trying to scrub red wine sick out of his bedroom carpet and my gorgeous Mother-In-Law throwing up the contents of her stomach (and potentially everyone elses as there was rather a lot) down the toilet in the bathroom. J came up the stairs… and promptly went back down. T then threw up in a bucket, and my sister was held hostage in her room by a barrier of vomit.

“It’s can’t get any worse”

My wise words to J…

Oh how wrong I was. How very very wrong I was.

By 6.30am the next morning, my poor M-I-L was still being sick in the toilet (at this point, one can only assume she was throwing up a kidney, as 4 1/2 hours solidly of vomiting would deduce this could be the only thing left), T was still being sick in his bucket, Squidge was still being sick everywhere – except on his towel, and my sister was being sick in a bin bag… because there was nowhere else for her to be sick due to everyone else being sick there already.

My Mum and Dad… slept through the WHOLE BLOODY THING.

Starting to feel somewhat queasy ourselves, J and I decided it would be wise to pack up and head home… less than 72 hours into our holiday due to Squidge the ‘Super-Spreader’ bringing Norovirus on holiday with us… Cheers Squidge.

By the next day, everyone, except my Mam** (miraculously) had it. There were sights which can never be spoken of again… Everyone else had to stay on holiday as they were too poorly to travel. J and I had possibly the worst 24 hours of our lives taking care of 2 vomiting kids whilst also having good old Noro ourselves.

Honestly. We spent that long trying to dodge bloody Covid, that we forgot about that Wanker.

Poor Squidge vomited for 12 days straight. And then got Bronchiolitis. Twice.

All in all, I think we managed 4 days without someone being ill over the 6 weeks holidays.

We did manage to do a couple of nice things though. We celebrated Squidge turning 2 with our wonderful family and Godchildren, and spent some time in the North East (which is where I am from) with my family. Attended 2 gorgeous weddings (although we had to leave one very early to take care of said vomming child). I took T to an Instillation (Squidge was still ill… SHOCK) and we did a local ‘Scarecrow Hunt’.

We also went to the beach and borrowed a ‘Beach Wheelchair’, which T LOVED (definitely worth googling if you are going to the seaside – not all beaches have them, but I found that Bridlington – which is fairly close to us, do. You just put down a £20 deposit and then you can wheel across the sand with ease! They even have chairs which you can take into the sea for swimming or paddling!)

T also got his new wheelchair, which is AMAZING. It is so much lighter and you can see how much happier he is. He spent a very enjoyable few hours in the park, wheeling down ramps and doing tricks in the skate park. NOTE: Safety equipment is needed moving forward for the sole purpose of lowering my blood pressure.

I’m so so pleased we pushed for this to happen with Wheelchair Services. The generic chairs they issue do not support young people with F.A being independent due to the cumbersome and heavy frames. T can now wheel himself independently for longer. I would urge anyone who has concerns about the mobility aids given to speak with your OT to see what can be done. This has been life changing for T, and definitely the best thing to come out of the summer holidays!

But alas, the vast majority of the rest was spent at home dealing with various illnesses and ailments. Poor T did not have the exciting summer I had planned.

And then, I went back to work for the training day at school… and tested positive for Covid.

FML.

Covid can kiss my ass.

Luckily, I managed to keep it away from all the boys (God knows how!), but it’s definitely taken a tole on my physical health and stamina. I’m just very grateful that I was jabbed up, and it was manageable.

Between the germ ridden summer and the old ‘Rona, things have felt a bit tough of late. I’m normally a ‘glass half full’ kinda gal, but I’ve been struggling to see the light over recent weeks and I’ve felt like everything is a bit of an up hill battle. Work has been ridiculously mental, and T is really starting to struggle moving around the house.

On that note, there was one further incident which really has not helped with my dark cloud.

You may remember from a previous post, that we have been looking into adapting our home for T to make things a bit more accessible for him. Social Services decreed that they would help to fund the conversion of our garage/utility to a downstairs bedroom and wet-room for him, but that the rest of the house was ‘non essential’ in terms of adapting. We disagree with this 100%. As it stands, T’s wheelchair would not fit into our living room, and he also would not be able to fully manoeuvre around the kitchen. Funnily enough, we quite like him being able to be part of family life and we’re not really overly keen on banishing him to one area of the house… So, we have borrowed some money, and we are adapting part of the house ourselves. We are extending the whole back of the property to create a large, open plan kitchen/dining room with space for a sofa and family area. This will mean that T can still eat dinner with us, and watch TV with us, even when in his wheelchair. We have pushed forward with this part of the renovations (Phase 1), so that we have a new utility and storage room ready for the funding coming through to start T’s room… meaning we still have somewhere to wash our clothes as the existing utility room will be gone!

It’s been a bit of a complicated process sorting T’s conversion, with the OT from Social Services and a designer having to come out several times to measure up and complete drawings, and then separately liaising with the (very lovely) person in charge of the funding. We finally received the drawings for T’s new room/wet room after weeks of waiting, but noticed that there was a rather large issue with them. The designer had commandeered an extra room in the house which had never been discussed.

When I queried this, the response I received was,

“Well the utility room isn’t big enough for a wet room”

Now this is fair enough. Our qualms are not with this. We want this space to be right for T. However. This was never discussed with us. We have never previously in our lives had to consider ‘wheelchair turning circles’, or ‘mobility regulations’, and we did not know that this space was not suitable. Nor did anyone tell us. Also, we had already paid for, and had plans drawn up, for Phase 1 of the renos using the space (the downstairs toilet) which they were now trying to steal. As part of our plans, we have created a storage room to make up for the fact that we are losing our garage. We need somewhere to store tools, and pushchairs, and bikes. I also have Crohns Disease, and so losing the downstairs toilet completely is simply not an option. Without going into detail here (let’s face it, I talk enough shit on here as it is, haha!) sometimes, I simply cannot get upstairs in time. That downstairs toilet is a must. I explained all of this to the OT who said she would feed back to the designer. Said designer then emailed the guy in charge of the funding… and accidentally cc’d J into it…

In the email, he implied that we were being difficult and that we just wanted it to be ‘aesthetically pleasing and to fit in with our new kitchen’. This email upset me for many reasons. Aside from the fact that it was hideously unprofessional, I could not believe the audacity of the man. Now I am aware that in the job he does, he does not need to consider the emotional implications to his work; but this is our home. Our home which needs to work for every member of the family. Our home which we want to feel nice and comfortable for all. Our home, which we don’t want to feel like a hospital. Will our new extension look nice? Yes. But would we have considered remodelling our house and borrowing tens of thousands of pounds to do so if our child did not need it to feel comfortable in his own home? No. No we would not. The insensitivity of his words hit me harder than I would care to mention. I hope that if he is a father, he never has to embark on a journey like this. I hope that his children are well, and that he does not need to consider the fact that they may well be a full time wheelchair user before hitting their teenage years. I hope that at some point, he realises that these ‘plans’ he draws are for families dealing with situations they never thought imaginable.

Also. On said plans, he left the main electrical circuit box in the middle of the wet room. I also hope that he realises that electricity and water do not go together. Moron.

Of course everyone was incredibly apologetic. But the damage had been done. J sent a reply to alert said designer to the fact he had cc’d us in. Said designer didn’t respond.

I think that this email, along with our Phase 1 building work starting, has signified that we have now hit a significant turning point in our journey. I remember when T was first diagnosed, the Neurologist stating that he “may be in a wheelchair some of the time before he is 16”, where as the reality is that he will more than likely be a full time wheelchair user before 13.

Both J and I are incredibly driven people. Since T received his diagnosis we have both just tried to ‘get on with it’. During these past couple of months, ‘getting on with it’, has felt like an ever increasing challenge. The unfairness of the situation and the impact it has on our lives has taken its toll somewhat. That and the fact that we have a teeny tiny Dictator going through the ‘terrible two’s’…

We find ourselves being overly cautious with Squidge, even though there may be no need for caution (although he is like a mini version of Evil Knievel with a penchant for parkour), and so we have made the decision to have him tested for F.A. As it stands, there is nothing significant to suggest he has Friedreichs Ataxia, however we find ourselves analysing every fall, every stumble. We need to know. If, for no other reason, than to stop us from limiting his experiences due to our own fears. We’re so used to being overly cautious with T wherever we go, that we naturally do the same with Squidge. There’s a 1 in 4 chance he will have it. But there is also a 3 in 4 chance he won’t. In a slightly less macabre Hunger Games style quote – may the odds be ever in our favour.

So there you have it, my dark cloud on a page. I’ve found this one a difficult one to write. I’ve been putting it off, if truth be told. It’s not always easy to say you are struggling. But I am. Or rather, I was. Thanks to my J and the boys, my wonderful family, and my incredible friends, the cloud is starting to lift. And as my amazing Mam once said to me,

It doesn’t matter how dark the night, the sun always rises in the morning”

My sun is starting to rise again.

Sending love to you and yours,

Lucy, and the Riley’s

x

*other bibs are available

**bloody Noro ended up getting my lovely Mam in the end… over a week later.

2 thoughts on “The sun always rises in the morning.

  1. You’re getting through a difficult time together and doing everything right! On top of that, you’re seeing just how little understanding there is out there. In my experience, not having FA when a sibling does is as traumatic as having it. Keep fighting, and keep telling others about it!

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s