A close friend told me the other day that I should tell anyone that wanted to be friends with me in the future to watch the incredible BBC sitcom There She Goes before they could be friends with me (still available on iPlayer, highly recommend). I loved this. That drama is like watching our life on screen (minus the seizures).

Do Listen

While I don’t expect my friends to be able to recite all of my child’s medications ,remember the names of her doctors and gain a deep understanding of the direct payments system for respite, I love it when they let me offload. If they remember little details when I bring it up again, it really helps me feel supported and heard.

Don’t downplay your own stuff.

Don’t downplay your own stuff. At some point I think all of my friends have found themselves finishing off a download or a moan about their life stuff with the words ‘but it’s nothing compared to what you’re going through, of course’. There’s no need to say this. In fact, I now actively ask people not to. I want to hear the stuff that’s going wrong in their life, it helps me remember that everyone has difficult things to deal with.

Don’t turn up at my house unannounced.

This has only happened on a few occasions but each time it’s unnerved me.We have so much uncertainty in our lives that a sudden doorbell ring with the expectation of a quick cup of tea is generally enough to send me into a tailspin. When the children are at school I cherish the quiet and am either working, doing the admin that comes with having a disabled child or trying to get some desperately needed rest.

Do give me loads of leeway.

My friends are brilliant at understanding when I don’t get back to them. There’s no pressure.Same applies when I have to bail on stuff, or say a flat out no.I can’t do late nights (that means past 9pm) and no longer drink alcohol or caffeine. All my friends understand this and know what I do and don’t do. I am in bed by 9 every night.    

Don’t feel pressure to ‘help’

Naturally, when I started on this journey, my friends wanted to help, somehow. In the early days, or at times when we are in hospital, things like cooked meals and practical help were what we needed. As time has gone on however, my close friends have been able to tune in more to the nuances of the situation and by far the most helpful thing for me now is having them listen, understand and sometimes help with practical advice (such as reading over an email) and helpful reminders about how I have coped in the past, so I know I can cope again. 

If I have one message based on my experience it would be this: Just listen, and be there. That’s it. It’s hard to see friends struggle, but part of the skill in being a friend is being able to sit with the other person in the hard times and bear it along with them, especially when you can’t make it better.

Life has changed considerably for my family in the last three years. At the end of April, it will be three years since my then 24yr old son James moved into supported accommodation.

It would be fair to say that since James’ birth, life has been an emotional rollercoaster. With the sleepless nights, open heart surgery, stomach surgery, other minor operations, behavioural issues and seizures to name just a few of the life events we’ve had to negotiate.

However, from the very beginning of the process of looking at a long-term home for James through to moving in day (and some-time after) I shed more tears than I had done at any period of my life.

James moving out was the most difficult decision my husband and I ever made.

When James was very young and the future seemed very far away, we discussed that when James reached his mid-twenties, we should be looking for a permanent home for him. In the end it actually came about by chance because a supported accommodation house was being renovated near to our house.

To cut a long story short, the accommodation on offer there wasn’t suitable for James but the lady who manages the company who run the home invited us to look at another of their properties a little further away. Actually 22 minutes door to door from our house to his.

A couple of months later after several visits to the home and many meetings with all the agencies involved in James’ care, we had to give a definitive yes or no.

The flat we were looking at in a communal home was in great demand. Due to covid, meetings were being held online. One August afternoon in one of those meetings I stated that yes, we wanted to proceed.  I was home alone and at the end of the meeting I turned off my laptop and I cried…and I cried some more….and I didn’t stop for months.

It’s a complex process to get all the funding in place not to mention the whole transition process itself for James and preparing his flat too. It was complicated by covid and the actual moving day was pushed back twice due to lockdowns. I really didn’t mind as it meant I got to keep James with us a little longer.

I will never forget how I felt the day I walked away and left James without us in his new home.

Of course, there have been some hiccups since James moved in. Nothing is ever going to be perfect but between myself and James’ staff we work them out. Life has taken on a new routine. We see James at least twice every week, he comes for tea on Tuesdays and we see him at the weekend.

I look forward to seeing James and enjoying quality time with him as I am no longer permanently exhausted. When he is at our house, I spend virtually all my time playing with him and he comes for regular sleepovers too.

What I do know is that I had total control over where James moved to. When I slip out of his life which one day I will, he will be secure in his home.

He will not be uprooted and moved miles away from everything he has ever known. I have seen this happen and this is what motivated me, this is what got me through those tearful difficult days. I did not want that for my son. When I am no longer here, his life will continue…….just without me in it.

Uuugh. Just when we thought we knew what the Dude’s pattern of seizures looked like, puberty has joined the party, turned all the tables over and thrown everything fragile out of the window.

It has been a relatively stable few years, seizure wise, for our boy. While we are (painfully) aware that we will never be able to stop the seizures fully, for the past 3 years or so a combination of medication and his VNS, together with dietary tweaks have kept him on a fairly even keel; since his spinal surgery last year however those pesky hormones are wreaking utter havoc.

Whether a combination of pain, hormones, teeth cutting through the gum (an issue for kiddos who aren’t orally fed being a delay in adult teeth coming in), the end result is seizure chaos. While it’s causing us to keep a closer eye on things, at school the repercussions are enormous.

Any epilepsy parent will tell you, probably through gritted teeth while grimacing, that care plans are something of a nightmare. Some are simple – giving paracetamol for pain for instance – while others are nothing short of the Devil’s own paperwork. Seizure care plans for a young man with multiple seizure types that present in ways staff haven’t seen before? You get the idea.

Recently, things have come to a head.

Surgery has meant he has better mobility of his head and limbs. Better mobility means he is moving about more. Moving about more has meant a lot of movements being misidentified as seizure-related. The care plans that were fine pre-puberty/pre-surgery and not fine any longer and need amending.

Like everything else in the world of SEN however, this is not a simple job. Due to safety concerns, the poor boy cannot attend school until the seizure care plan is amended; this will prevent him receiving too much rescue medication due to the care plan not being accurate, but also means he is missing his friends.

In order to change it, we need to liase with his epilepsy nurse. And the school nurse. AND his neurologist. There is not enough hair dye IN EUROPE to cover the amount of white hairs I am developing.

We always knew puberty could be a tricky time for our boy; friends who have already navigated this stage of life with their young people have filled us in. But nothing prepares you for how quickly things can change.

I am definitely not ready for my baby to be a teenager, but I’m even less ready to ride the storm that is potentially coming. On a lighter note, it would appear his voice stating to break making him sound like a honking goose is one of the funniest things the Dude has ever heard…

There is a day to celebrate our siblings and our relationship with them. This year it is 10^th April. I have just one sibling. A sister. Two years older than me as I frequently like to remind her.

As I imagine is the case with most siblings, we don’t always agree on everything, we are our own people and have different views. When I reflect on my childhood though, I remember always having my sister to play with whether it be with our Pippa dolls on the lounge floor or going to the local park together.

As we got older, we’d go swimming or walk to the bakers to buy lunch in the school holidays. She was always there.

As teenagers we grew apart and had our own friends and boyfriends. As adults our lives took us on different paths and for some years my sister lived further away. We were in contact but each busy with our own lives.

Many years later and now in our (late!!) fifties we live barely a mile apart and whilst our lives are still quite different, we are probably closer than we have ever been.

I Have Two Sons.

My eldest James is 27 years old and has complex needs. He is non-verbal and has a severe learning disability. Harry is 24 years old. Their sibling experience has been very different from mine.

James was three and a half years old when Harry was born. Due to the severity of James’ developmental delay, Harry didn’t have a sibling to play with in the same way as I had. James wasn’t always able to do the things that Harry wanted to. There were some times when they were able to do things together that they both enjoyed.

I remember we had two child toy buggies. They would run around the house laughing and chasing each other. My door frames still bear the scars! Harry would stick cardboard boxes and yoghurt pots together to make instruments and James would think it hilarious and entertaining when Harry ‘played’ them.    

It wasn’t long before Harry’s abilities surpassed James’ and he wanted to play different games. What he wanted most was someone to play them with. We played with him of course when time allowed but it wasn’t the same as having playmates his own age.

When Harry started nursery and then infant school he loved to play with the other children. Such was his enthusiasm I think he often came over a little over zealous, even bossy and boisterous when in reality he was just desperate for them to play with him.

Once at secondary school, having friends back to our house could be difficult for Harry. James would go up to them and kiss them or sit on their laps. As a teenage boy Harry sometimes found this embarrassing then there was James’ meltdowns to contend with too, especially difficult for Harry when out in public.

Harry later joined a sibling support group at the hospice we attended with James.

This gave him the opportunity to go on days out with other children in his situation. Whilst he enjoyed them, I don’t think they really spoke much about the impact having a disabled brother or sister had on them. When James was 18 years old he could no longer attend the hospice so that finished for Harry too.

At times I felt sorry for Harry, conscious that his mates had their siblings to go and kick a ball about with or play their computer games whilst he had no one. The amount of time I spent looking after James severely impacted Harry. I wasn’t always able to take Harry to scouts or to a party because James was asleep in bed on his feeding pump. They may seem little things to other people but to a child they’re important when you don’t feel part of your peer group and the same as everyone else.

Many years on and the boys are now young men. James lives in supported accommodation. They don’t spend nearly as much time together. Harry keeps a listening ear on what’s happening in James’ world though, he has strong opinions and lets me know if he feels something isn’t right or James has been dealt a disservice. He will call me from work to check how James is if he is unwell or had an appointment. He’s not involved hands on in James’ care but he likes to know everything is ok for his brother. 

When I started my career after university in a busy London PR agency, I soon became acquainted with the Sundy Night Blues. That feeling that starts to creep in at around 1pm on Sunday and, by the time the perky theme tune of the Antiques Roadshow strikes up, has enveloped you, tainting the precious last few hours of the weekend.

Many people I know still get that feeling now. Wishing the week away and celebrating the weekend is very much part of small talk; ‘At least it’s Friday’ / ‘Back to work / school tomorrow – sigh’, ‘Nearly halfway through…’ etc.

This is one of the ways in which I find myself feeling unseen as a parent carer. Most people, apart from those very close to our family, still assume it’s the same for us. This is not their fault. They couldn’t possibly know that weekends mean no night care, often no respite (although we do have enabling days), and no on-call medical team that know our child.

Mornings normally start between 5 and 6 for us, if it’s been a good night. If it’s been a bad one, one of us could have been up from midnight and the other will take over around 4.30. Today we were in bed at 6.30 and all was quiet. It felt like an unbelievable luxury. Thanks to our body clocks we were both wide awake and reading, which felt like a total treat.

In the week, there is time for rest after an early morning. The school car comes to pick up our daughter at 8.30 and then we go to work, or get on with household chores if it’s the end of the week when I am not at my job.

Work for us is respite. It really is.

I’m not saying this for effect or to demonstrate how tough our lives are, but we are both lucky enough to have creative jobs, working with great people, and both our jobs have nothing to do with the world of childhood disability.

When our daughter’s seizures are bad or we are living on the edge of another hospital admission, I get the Friday Night Terrors, knowing that over the weekend, although there is an emergency care team about 5 minutes from our house (forever grateful that we live around the corner from a hospital), our daughter’s team are not there.

I cannot contact her epilepsy nurse for advice, or email back and forth with her consultant. Once, an emergency doctor in resus had never heard of a VNS (Vagus Nerve Stimulator – an increasingly common treatment for drug resistant epilepsies). In the past, the resus team have had to call her consultant at home for advice as her epilepsy is so complex.

In crisis times this makes weekends feel very exposing and scary.

On Mondays, I genuinely feel my shoulders drop as I can feel the weight of responsibility lift. When our daughter is at school, the pressure on us to be next to her at all time, watch and monitor her every move (both to prevent her from doing something dangerous, or to alert us to a seizure), is gone. Her care team are back in the office and services are around to talk to. I can move all of the care and admin forward as people who hold the key to our support are at their desks.

It’s now the Easter holidays and, while I find myself excited to be spending more time with my little girl (she is gorgeous and amazing), I know I will stumble out the other side with jelly legs, completely depleted of emotional and physical energy.

I am currently working on launching a campaign for special schools to be given funding to provide flexible in-built holiday provision as needed throughout school holidays. Any current provision, where it exists, is often patchy and inconsistent. I am hoping that if, one day, we could see something like this rolled out, we may reduce those pre-holiday Friday Night Blues just a little for parent carers that experience it.    

Dear reader, I am comprehensively exhausted. I would dearly love to say that this is because Mr V and I have a fabulous social life, or that as a tweenager the Dude is constantly off out at various social events of his own. Frustratingly, my current state of creaking tiredness is a result of feeling like I am spending an increasingly large amount of time arranging meetings, chasing up training and doing tasks that other professionals should be doing.

I know a lot of this is due to the cuts made to various services over the years; too few staff trying to do too much work is always going to end up leading to problems. After the Dude’s spinal surgery back in October he developed a slight issue with the surgical incision where it simply didn’t heal at the base of the wound. This left him with a 1 inch hole in his back which was a massive infection risk, and needed daily dressing changes. In 2023 our community nursing service was decimated, meaning many of the services that they used to provide and which families like ours relied upon are no longer available. We were lucky if we could get a nurse to come out once a week – so the task fell to us to manage this genuinely terrifying wound in our child’s spine.

We were lucky if we could get a nurse to come out once a week – so the task fell to us to manage this genuinely terrifying wound in our child’s spine.

And then there are the training requirements for carers – the number of forms that need to be filled in and boxes that need to be ticked is truly eye opening! In my adorable offspring’s case, this means that training needs to be provided for his PEG feeding tube, feeding his blended diet down said tube, his seizure management, manual handling, secretion management, VNS use and the list goes on. It would be far too simple if there was a single point of contact for all this, instead each item of training needs to be dealt with by a different professional (in several cases in totally different hospitals). While we have been dealing with all this for years, as we are not healthcare professionals, we are not able to do the training for the carers ourselves despite being the experts in our child’s care.

Parent carers are an impressive bunch, we learn how best to support our children whether that’s by managing medical needs, performing nursing tasks, tube changes, tissue viability issues and the associated admin all while managing family life. It’s a juggling act we don’t always get right, and the occasional spinning plate hits the floor. This month, most of the tasks have gone well… I’m going to take that as a win, pour a glass of wine, and wait for whatever April brings.

I have just returned from Ikea. It was a simple trip out with my daughter and her carer (it would be impossible to do this on my own; my heart rate would be through the roof). It actually went pretty well i.e. without major incident.

We did have to change our plan when we arrived by buying her a full hot meal that we had not intended to. She is used to going there to eat, it’s one of the few places informal enough that we can just about make it work. So, when we arrived, she understandably dragged us to the café. It made complete sense to her and there was nothing I could do. Refusal would have meant a heart-wrenching meltdown and her completely refusing to move. This is not because she is ‘spoilt’. It is simply that she does not have the understanding or communication for us to be able to explain to her that we cannot always have a meal in this place. She would be bewildered and extremely sad. It would not make any sense to her. So we have to ‘give in’.

This is a really hard thing to get used to and to explain to others.

It is unimaginable to most people that you have to do this but there really is no kind alternative once you are in the situation. The only alternative is going somewhere else where she does not have the food association. I would love to be able to gently explain to her, as I could to a typical nine year old, that we don’t always eat out because it is a treat, and it is expensive, and that we will make a nice tea at home.

The fact that her understanding is not even close to this at least makes our course of action clear cut. It does not however, help me with the stares from others as she marches past the queue straight to the food counter. There is nothing I can do. I am ready with my lines, rehearsed and ready to go if anyone confronts me, but silent judgment tends to win out, and people simply just look. My heart rate rises, I feel defensive, sad and on show. Part of me wants to grab a chair and give a speech to (what feels like) the crowd of people staring, to tell them she has a rare syndrome, that we deal with seizures most nights, that the fact that she has fewer words now, at 9, than she had at 3, makes my heart so painfully sore. But instead I crouch down to her, look at her beautiful face and talk to her. I try to focus solely on her.

Today’s trip went largely without incident but I am still settling down from it.

I realise that this is because, when we are out with my daughter I carry a constant feeling of anticipation, ready for something to happen at any moment. A display tipped over, glass smashed, other’s personal space being invaded, a seizure, breaking free, 25 minutes refusing to move, wince-inducing yelling, turns, stares, tuts. It’s only when we shut our front door that I can begin to relax. I feel exhausted.

On the way out of the shop, my little girl was beaming on the escalator. I took photos as if we were at a theme park. My heart soared to see her so happy. Herein lies the secret joy that others don’t see.

I do believe this specific type and level of anticipation to be exclusive to having a disabled child. As with so many other aspects of our lives, this can make it impossible for others to empathise with. In the meantime, all we can do is focus on our child. For that is where the magic is. 

The picture depicts another recent trip to Ikea where an ill-thought-through ride on a flatbed trolley resulted in a 20 min delay in the car park, as our daughter refused to get off.

Q: “How’s Heidi doing?”

A: “I don’t want to tempt fate but she’s doing really well thanks” *touch wood / fingers crossed / hope I haven’t jinxed it*

A pretty standard conversation in my world/head. Someone asks how Heidi’s doing and inwardly go into a quiet panic. If I say she’s doing well, will that curse things? Should I play it down when we’re having a good spell, in case things rapidly change and it would all be my fault? Will people think badly of me if I say we’re good, when I know so many others are having a tough time? Will that positive comment come back to bite me?

I shared a post a few months ago on Facebook:

“A rare thing is happening – Heidi is sleeping through…totally get that I have now jinxed it, and also appreciate that sleep is a precious commodity many parents (especially those who have kiddies with extra needs) miss out on. Coming up to 9 years of broken nights, I’m celebrating the last 3 sleeps.

A GP friend of mine pointed out in the comments that there’s no such thing as jinxing. Whether the sleep continues or not it has happened, and nothing can take that away.

As so many things do, it got me thinking.

Since having Heidi my view on fate has changed. I used to think that everything happened for a reason, that fate would work things out. I no longer believe that. Sometimes things don’t have a reason (including big things like why did Heidi collapse just after she was born?). It wasn’t fate. I wasn’t “chosen” to be Heidi’s Mum because I could cope any better than the next person or had any secret powers. I grew resilient, and strong, and continue to have wobbles because of our situation.

By celebrating the good days, I’m now refusing to believe that I will cause any bad days. I hope they are few and far between, but if I worry about them before they happen, it won’t change the outcome and I’ll be missing out on today, which is always the most important time.

(And just for the record, the sleep has been a bit hit and miss, but I’ll take the naps where I can!).

February 2024 and we’re approaching 4 years since the beginning of the COVID 19 Pandemic. The UK entered its first lockdown towards the end of March 2020. I had to double check that was correct as I couldn’t believe quite that much time had passed.

As a carer I often feel that large portions of time will pass me by in a blur. Sometimes for months on end there will be non-stop appointments, phone calls, emails, applications and so many other kinds of relentless admin drudgery that comes alongside managing the care of a medically complex child within a rapidly failing system.

We all remember what a scary and unprecedented time it was during the pandemic. Many families like ours battled through some extremely tough circumstances, without the appropriate care and support they so desperately needed.

When lockdowns were eventually lifted, restrictions were eased and everyday things slowly started to return to normal, I felt a genuine sense of relief and (I now realise very naively) allowed myself to cling to the hope that things would improve for us.

Things could only get better now surely.

We would have access to the services that had been halted, much needed support would come, access to medical treatment and therapies would be better than they had been for months etc.

Whilst of course there have been aspects of our life that have improved since coming out of the pandemic, I can honestly say that overall, the majority of things have only continued to get progressively worse.

A huge issue that we have been facing for the last few years is being unable to obtain vital medical supplies and medications, as a result of the ongoing global supply chain crisis that began during the pandemic. I have lost count of the medications and supplies that we have struggled to obtain. It seems to be a different item every other week and I live in constant fear of what the next thing will be.

It is absolutely terrifying as a parent to discover that an essential medication is missing from your child’s prescription, even more so when you contact the GP or the pharmacy (praying that it is just an oversight that has been missed) to be told nonchalantly “We can’t get that medication, there is a manufacturing issue”, as if this tiny titbit of information (that was only offered up because you contacted them and asked) is enough for you to stop hassling them and be off on your merry way.

Now, I’m a reasonable and logical thinking person (most of the time), so I understand that some situations are out of people’s control. I have never expected that by some miracle because I’m stressing our urgent need for something, it can be magically conjured up from thin air.

I’m very aware that it is an ongoing, widespread problem.

I’m very aware that it is an ongoing, widespread problem. What I can’t seem to elucidate (despite repeated attempts to multiple professionals and services) is that the thing that I take serious issue with is the complete mishandling of the situation.

If items are unavailable, then they are unavailable. However, the thing that I find exceptionally concerning is that not once during this global crisis, has any professional contacted me voluntarily to check on the welfare of my son in the event of an out-of-stock medication or to discuss concerns I may have. Even in relation to a medication that can cause seizures, respiratory distress and fatality if abruptly stopped. At no point has anybody voluntarily offered any alternatives or suggested a contingency plan going forward should a specific item not come back into stock.

Every single time we have been faced with a supply issue that has eventually led to a solution being reached, is only a direct result of me relentlessly making a nuisance of myself and demanding that someone address the problem (either by trying to source the item elsewhere or failing this, requesting an alternative medication).

This has taken several months in some circumstances.

One of his medications that we are currently unable to source, has been in short supply for some time. I have been trying to work with his medical team to manage the problem since around November last year. I have sent close to 50 emails in relation to this one medication and made close to a hundred phone calls.

I have since discovered (again, only because I researched the medication myself) that this medication that is unlicensed for use in children, has a particularly nasty withdrawal, especially when prescribed long term and my son has been on this medication for around 3 years. Online it was advised that a specific medication can be prescribed when coming off this just in order to manage the withdrawal symptoms.

So obviously I have concerns about this and would like to know how best to manage this withdrawal period that he will have to go through.

I have since spent weeks telephoning and emailing several Doctors, pharmacists and healthcare professionals about this and not one person has gotten back to me with any advice on how to manage this.

I always do the very best that I can to ensure my son has everything that he needs to manage his medical conditions and keep him as well and comfortable as possible. This is becoming harder and harder with each passing year, as the level of chasing, red tape and hoop jumping required for the most basic of things multiplies and the attitude towards you for having the audacity to do so sours even further.

The added workload and emotional toll of it all is a heavy burden to carry, but one that I would battle through to the death if I had to, to ensure that my son’s needs are met.

The complete lack of foresight and concern for people’s well-being from the very people that we rely on is a stark reminder of the state of our health service. Not everyone that finds themselves facing these problems is fortunate enough to be able to advocate for themselves or appoint somebody else to do so on their behalf. I often worry about what happens to those people. Do they just silently disappear into the ether?