Kindness

“Being kind to yourself”. This phrase has become so ubiquitous that sadly, I think it’s lost some of its meaning. It’s been bandied around for years now, emblazoned across various merchandise in shops and splashed across social media on cute memes, usually with a cat with a paw around another. While I’ll never say no to a cat meme, I find myself internally sighing ‘yes, ok’ and scrolling past. Since I have become a parent carer, this phrase seems to be thrown my way even more, by everyone from well-meaning professionals to support groups and charities.

It was talked about in a meditation at the end of my yoga class the other week, and for some reason I really thought hard about it.  The reason I’d been shrugging it off was not just due to the fact that it’s everywhere, but because I thought I was already being kind to myself. I prioritise self-care (yoga, counselling, walks etc. etc.), and I don’t feel guilty for treating myself when I need it. But when I looked deeper, I realised it’s more about my internal monologue, what I say to myself.

Here, I don’t think I am as kind as I could be.

One example that comes to mind is playing with my daughter, who is 9 but is cognitively around 18 months old. She likes to ‘post’ things (bits of paper into drawers), do very simple peg puzzles, have me read the same picture book repeatedly and watch the same sing and sign video from the late 1990’s, complete with presenters wearing Global Hypercolour T Shirts, on a loop. I get bored. I have never enjoyed this kind of playing, even when both of my girls were toddlers and I had only been doing it for a few months. Nine years on, when I am dragged off of the sofa to play with the same puzzle yet again, I feel frustrated and fed up. And then I feel guilty.

Guilt is one of the emotions I struggle with the most. In this case it comes from my internal monologue – here’s a flavour of how it goes…

“I should want to play with my gorgeous girl.”

“I need to do this to be a good mum.”

“I should be really grateful she is not having seizures in hospital and is able to play.”

“I should be enjoying and savouring these precious moments.”

“I should be doing this to help her development.”

And I realise. That is not being kind to myself.

Being kind to myself goes something a little more like this:

“It’s completely understandable that you’d be bored having to do the same activity repeatedly. Your mind wondering is perfectly fine, and having a nice podcast on in the background is fine too. It’s ok to do this only for a little while. It’s also ok to say no and not do it at all. School is where she gets all of this sort of play, and you can bond and spend time together in other ways that suit you both.” Interestingly, I wrote this as if I was saying it to a friend. A counsellor once (actually more than once) said to me. Would you talk to a friend how you’d talk to yourself? It’s a well-known but very helpful question to check in on just how kind you are being to yourself. A yoga or a massage can only go so far if we don’t talk to ourselves kindly. I am working on remembering that

I Love You Mum

Just four little words that mean so very much. I remember when my now 24yr old was much younger, he would often throw his arms around my neck and say “I Love You Mum”. My heart would swell.

The likelihood is that my eldest son (now 27yrs) will never say those words. He is nonverbal. He can ‘sign’ I love you. I’m not sure he understands what love means. I tell him often that I love him. His response tells me he thinks it’s something nice…….he’ll usually blow me a kiss. I ask him if he loves Mum. He shakes his head. It doesn’t upset me. He shakes his head to everything. Everything that is apart from “Do you want pudding?”  Then he can nod and say “Yeah.”

As Mother’s Day has just passed, we have seen all the cards in the shops expressing our love and thanks to our mums. The advertisements for expensive treats and meals out. Commercialism….. says my 24yr old cynic. He doesn’t buy into it, he never has. Until recently he was a cash strapped student and I wouldn’t have wanted him to spend his limited funds on me. Just a hug and those four little words were enough. (Though his dad would ensure there was always a little something for me from the boys)

I have never had breakfast cooked for me on Mother’s Day.

I have never had breakfast cooked for me on Mother’s Day.

I am the only cook in my house so actually I’ve not had breakfast cooked for me ever. I’ve never been taken out to lunch or for afternoon tea on Mother’s Day either. Pubs are crowded and it would have been difficult with my eldest who has complex needs. I really don’t mind.

As for my mum, I know as I approach my late fifties this year that I am very lucky to still have my own mum in my life. So yes……I have bought into the commercialism as I have done every year since I was able. I had the card and the gift. I’ll tell my mum I love her, I don’t tell her often enough but I hope she knows how much I love her every single day.    

Wanted: Personal Assistant

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.

Anticipation

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.

No Longer Tempting Fate

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!).

The impact of a global supply chain crisis

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?

The Choices We Make

When I was pregnant with my first son, I was in a job I enjoyed and I had no reason to think that I wouldn’t be able to continue in that role after my baby’s birth. Other women in my workplace had reduced their hours when they had children and that’s what I had planned to do.

When James was born it gradually became clear that he was going to have some ongoing additional needs. We had no idea to what extent. That didn’t become apparent for some time. As planned, I returned to work part-time, just two days a week. I found a lovely child minder, a mature lady who had no other children to care for when she had James so she had lots of time to give him the attention he needed.

Leaving James was hard, he was so tiny. It was good for me to be back at work although sometimes I felt exhausted from the demands of looking after James and a severe lack of sleep. I was lucky to have a very supportive boss and staff team around me.

Uncertain Times.

Just a few months after my return-to-work James had to have open heart surgery and so I took a period of six weeks off to care for him. During the months that followed he began to have seizures and was regularly in and out of hospital having various tests and sometimes for longer admissions as he was failing to thrive. If James was in hospital, then I was always with him. I was at home or hospital more often than I was at work sometimes.

I was employed by Social Services in a Family Centre. I worked with families who needed some support with parenting their children, some had challenging behaviour, some parents had anger management issues or addictions. Sometimes I was required to supervise access visits and write reports and represent the county council in Court. It was varied. I did a lot of inhouse training in my role and had every intention of going on to do my SW qualification at some point in the future.

I enjoyed being part of a team at work. My time at home with James was often very isolating. My husband worked long and unsociable hours and I spent very little time with friends as their lives with their children felt very different from mine. Fitting in a trip to the shop was difficult enough between James’ two hourly feeds and bouts of vomiting and even more so when his seizures started too.

Then There Were Two.

My youngest son Harry was born when James was three and a half years old. It was then that I made the decision to remain home full time. Both boys had significantly different needs and finding appropriate childcare was going to be challenge and not financially viable. I missed my colleagues, some of whom have become long term friends but my priority was very much my boys.

As the years went by I never did return to work. James’ needs were complex and we were always at medical appointments, assessments or meetings. For many years I felt that my only identity was as ‘James’ Mum’. I didn’t resent it because I’m very proud to be known as James’ mum.

As James got older my roles of mum and carer blended together. I was neither just one or the other, I was both. There may have been times when I felt I’d lost something of myself along the way but given the same situation now I’d make the same choice all over again.

When you look back time goes so quickly, my sons are both now young men 24yrs and 27yrs of age. I wouldn’t have missed a moment of that time I spent at home with them…..maybe a little more sleep would have been nice.

When it Clicks

For some of us the “little things” don’t always come easy.

In fact, for many of us, those “little things” are truly the incredible, BIG things.

Parents of children with disabilities wait…

And wait…

Sometimes, the achievements we wait for may not ever happen at all. It is an ache that dulls some over time, as we grow into acceptance. We learn to meet our children right where they are.

They are enough and they are exactly who they are meant to be.

However, that doesn’t mean that we EVER lose hope. We never give up.

We spend years taking our children to therapies, learning various techniques from professionals, and applying them at home. Our brains are like sponges; they absorb an abundance of information that aids us in teaching our children to become as independent as possible.

We dedicate hours to researching intervention methods on communication, mobility, behaviors, and sensory defensiveness. We wonder every single day (and worry through sleepless nights), “Am I doing enough?”

Sometimes, we grow weary.

When something just doesn’t “click”, no matter how many different, desperate attempts we’ve tried, the feeling of defeat can be inescapable.

I recently stopped focusing on self-feeding skills with my daughter. I had placed that on the back burner, as our progress had stalled. I felt that I was pushing too hard, and it was stressful for her, so I stepped back and gave us both a break.

Then one day, out of the blue, something magical happened.

While eating a packet of chocolate Teddy Grahams, my husband caught our girl’s attention. As her bright eyes widened, she watched with great intent as he slowly ate one of the intriguing, tiny cookies. He placed one in the palm of his extended hand and asked her if she’d like one. We watched in sheer amazement as she picked it up and brought it towards her lips! At 13 years old, we still had not experienced the victory of her eating finger foods. We’ve done countless feeding therapies, and tried numerous dissolvable snacks over the years, to little avail.

But on this day, she saw a chocolate bear, picked it up, and independently brought it to her mouth. She watched and imitated this major life skill!

She didn’t quite eat it, but she held it tightly to her pursed lips, to experience a taste. She hasn’t yet mastered chewing, so we were on high alert to quickly grab it if it made its way into her mouth. She held onto it, without throwing it down in protest! Before our completely bewildered eyes, as we held our breath, we witnessed her conquering an amazing feat. She showed awareness of this early developmental concept. This realization, along with a huge fine motor task, had been absent for so long.

It finally CLICKED!

She was so enthralled, she even reached into the packet several times to feel them, pulling the teeny snacks out and smelling their rich, chocolate aroma!

Since that day, I’ve been excited as we’ve resumed our feeding practice. My fire was reignited, and I’m driven to help her continue this almighty quest. Her Daddy has earned the title of “Feeding Whisperer”, as he’s taught her to hold and taste the salt from the ends of pretzel sticks. One of her favorite new activities is picking up small, dissolvable baby puff snacks and holding them to her lips. I just know that soon, she’s going to eat one!

When the breakthrough, aha moments finally happen, suddenly all the waiting is worth it. A success that may seem miniscule to most is significant in our world. We don’t take the victory lightly, or ever for granted. When it clicks, great pride and gratitude wash over us and we know every second that we pour into these battles is worth it.

February 14th

When someone asks what I’m doing or did for Valentine’s day I smile politely and say something along the lines of ‘quiet night in with Him Indoors’. Mr V and I have attempted to go out for Valentine’s day once since the Dude arrived on the scene. Let’s just say it was not an experience we wished to repeat involving a minor car accident, us standing the rain for many hours waiting on the recovery truck and both of us agreeing to stay at home next time!

Valentine’s day for us has a much greater significance than flowers and a disastrous attempt at date night however. Did you know St. Valentine is the patron saint for epilepsy? In this house that fact alone makes it worthy of note, but it is also the anniversary of the Dudes life-changing VNS surgery. In this house, Valentines day is a celebration of how far our amazing boy has come thanks to that incredible little implant.

It’s quite hard to believe that is was 7 years ago that the photo above was taken.

The VNS doesn’t stop the Dude’s seizures entirely but have given him precious respite from their constant assault on his brain and body. When people ask how many seizures he has they are genuinely horrified to hear he has around 6-10 every day; the VNS stops an average of 60 seizures DAILY from developing. Can you imagine the impact that level of seizure activity has on a developing brain? By reducing this, his VNS has allowed him to develop cognitively, to improve his communication skills and to have a vastly improved quality of life.

We are acutely aware that our boy is one of the lucky ones as the VNS doesn’t work for everyone. It’s classed as a palliative measure, not curative, so although it has been reported to stop seizures completely in some cases this is the exception. When my boy went down to surgery that day I can remember praying for it to at least help him a little bit, because it just HAD to. 7 years on, while we still feel it should have at least a small LED visible at the skin surface (the Dude thinks a more Iron Man style chest piece would be appropriate) so we know we have actually activated the implant with the magnet, it is still an awesome piece of kit. So, on February 14th we will indeed be having a quiet night in, all three of us, to take time to enjoy just being a family. Happy Valentine’s day everyone.