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?

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.

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.

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 14^th 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.

I have read (seen on TikTok) a few times in the last week the idea of not feeling like we need to ‘behave like summer’ when it’s winter. It’s the idea that it is ok to listen to how a season, or a situation makes us feel and respond to that with what feels right. So in winter, not feeling like we have to find more energy to go on a hikes, to keep pushing ourselves and challenging ourselves (unless we really feel like it), but to give ourselves permission to do what feels good.

For me that looks more like blankets, loose fitting trousers, fairy lights, a buffet of sweet and savoury snacks, and a book (ok, it’s often my phone, but I am trying to get better at putting it down). I am still finding time to do some exercise and getting out for sun on my face whenever I can, but I am not pushing it.

I have been thinking about this idea of how ‘doing what we need to do’ relates to being a parent carer of a disabled child. For many parent carers (I will guess most) life is frequently up and down, often lurching sideways.

I’d love to hear a shipping-forecast style report of how a parent carer’s week looks.

We all know that storms feature heavily. What I am learning is that my response to these weather-events, or darker seasons, is very important. This isn’t so much about the feeling bit. I of course can’t control my initial reactions when our little girl has a seizure, or the anxiety I feel when we are out in public and her determination eclipses everything. And it is important I allow myself to feel the deep sadness when it arrives. But the doing bit; what I do and how I look after myself during these times, is something worth focussing on.

I have had to accept that I can’t push through it all by living life as normal during these difficult times. I have to dial it down, say no to things (sometimes things that I had already said yes to), surround myself with my inner circle of family and friends (only those I am comfortable to cry snot into the shoulders of) and hunker down while the storm, or the cold, dark season, does its thing.

Once things start to calm and lighten I can emerge a little more.

My tendency in the early days of this storm-weathering was to throw myself back into life and try to catch up. To try to prove that having a disabled child hasn’t changed what I can do, that I’m still the same person. Except I am not. So I don’t do that anymore. It is too tiring and it serves no one. Instead I try to follow my instincts, which more often than not tell me to get some snacks, find a blanket, switch on some fairy lights, and rest. 

I’d somehow managed to reach the ripe old age of 30 years old without ever having reason for feeding tubes and gastrostomies to register on my radar. Until that is, I was faced with the situation of my tiny son being repeatedly admitted to hospital ‘failing to thrive.’

James was born full term weighing only 4lb 10oz. We were unaware at the time that he was later to be diagnosed with a rare genetic condition called Wolf-Hirschhorn Syndrome. His syndrome was in fact going to be the defining factor in James’ weight and growth over the coming years. His birthweight was also due to ‘growth retardation’ within my womb, also a significant feature of his later diagnosis. Retardation…. I’ve always found that to be such a hideous word, especially when being used to describe my son.

James Struggles.

At 11 months old James was found to have a large hole in his heart and so shortly after his first birthday he underwent surgery to correct this. We had hoped that this may improve James’ ability to gain weight. Unfortunately, it didn’t. Along with this James had severe reflux and much of his feed invariably ended up over me and everything within a couple of metres radius!!

During one of his now all too frequent admissions to hospital it was suggested that James needed some supplementary feeding via a nasal tube. I was taught how to insert these and how to boost his limited oral intake with feeds down his tube.

It wasn’t easy, as tiny as he was, he was a fighter…quite literally. I was often on my own inserting the nasal tubes as my husband was working ridiculously long and unsociable hours. I had to swaddle James in a towel and straddle him to get the tube down and stuck in place before he could wriggle an arm free and pull it out again.

Sometime following this James had a PEG fitted directly into his stomach. A PEG is one of many different types of feeding tube. However, the benefits were limited all the time he continued to have severe reflux. Unfortunately, his reflux was unresponsive to any of the prescribed medications. James still struggled to keep food down and to put on weight. It was heartbreaking. I’d spend hours feeding him and cleaning him after episodes of vomiting and still he would lose weight.

More Surgery.

There was no other option than for him to undergo a procedure called Nissans Fundoplication ….in layman’s terms, the juncture between the oesophagus and the stomach is tightened to prevent reflux occurring. During this surgery James’ PEG was changed to a different type of feeding tube, a Button.

It was slow progress at first but as James had finally stopped vomiting and we had a way of getting extra nutrition in him via his Button, he did gradually start to grow and put on weight. James currently eats a soft mashed diet but at 27 years old he still cannot consume enough calories to maintain his weight. He still continues to have a bolus feed in the morning and a 5-hour overnight feed via his button.

James’ growth and weight are very much determined by his genetic status but he has remained at 138cm in height for many years and he fluctuates between 38-39kg in weight. James is very cooperative with his gastrostomy feeding. He lifts his shirt and allows you to do what you need to do. I guess it has just always been part of him and he doesn’t know otherwise. At times when he hasn’t eaten it has been a relief to know I can get something down him through his tube. He’s also often reluctant to drink so it has been an absolute boon to know I can keep him hydrated particularly in the hot weather. As for getting medication down, its great for that too.

I know many people will have reservations about having a gastrotomy and will have not had the positive experience we have but I look back now and see it as a really positive turning point for James.

Special needs. Additional needs. Complex needs.

Some of the labels that have been used to describe my daughter over the last 8 and a bit years. (For those who don’t know Heidi, she had an H.I.E. event just after she was born meaning she went without oxygen. As a result, she has cerebral palsy, is non-mobile, non-verbal, has a tracheostomy, global developmental delays, fully tube fed, epilepsy, dystonia…quite a list, and mainly she is amazing!).

The first time I heard the words “special needs” and “complex”, when Heidi was still only a few months old, my stomach lurched. Of course, I had heard the terms before, but all of a sudden, when they were talking about my beautiful, perfect daughter, the words hit me and hit me hard.

The more I thought about it, the more I disagreed with the choice of words.

I understand they are very much in use across a variety of settings – hospitals, schools, equipment providers for example – but is it time they were updated?

The way I see it now, several years into our journey, is that my daughter has needs.

Like any other little girl or boy, she needs warmth and comfort, she needs food and water, she needs to know she is loved beyond all measure and always protected. This doesn’t make her special – it makes her like everyone else.

Yes, her comfort may include using pieces of equipment (like her moulded seat, or slings and hoist); yes, her nutrition and medication may need to go in via a gastrostomy (feeding tube) directly to her stomach rather than her chewing and eating; yes, her communication needs may need to be tailored to suit her understanding. But her needs are not special.

Increasingly I see parents like me, advocating for our children, protecting them, and fighting for what they need.

Maybe we should view it less about the child’s differences, and more about what we need to do differently. How can we, as society, include them? How can we make life easier for them and their family? How can we ensure that everyone has the same access to everything, the same support, without the parents having to fight.

Let’s make it the norm, that everyone is fully included. Now that would be special.

Winter Break passed by in a hurry.

While three whole weeks of later starts and more relaxed schedules brought much needed relief, it was fleeting. I relished having my morning coffee by the illuminating glow of the Christmas tree. I loved being free from the stress that comes with rushing out the door into the cold, arms loaded down, and racing against the clock to make it ANYWHERE on time.

We cherished extended stays in our pajamas. On days with no outpatient therapies scheduled, we enjoyed the coziness of home, without the constant need to go, go, go. My kids savored sleeping in and having no school. Being at home, in our bubble, we finally managed to stay healthy this time; we thankfully dodged all holiday-wrecking illnesses.

It couldn’t last forever. As much as we all needed rest and time together, now, we REALLY need to return to our routines. We need to give the YouTube videos, that have played on a never-ending loop, a break.

We need consistency in our world to thrive.

In our world of Autism, Epilepsy, complex disabilities, and many additional needs, it’s hard not to worry when the first day back to reality hits.

I fret over the potential of my daughter being exposed to sickness at school. We’ve steered clear of fevers and seizures. I push onward with our regimen of immune system boosting vitamins. I fill her bookbag with hand sanitizing wipes and say a prayer.

I tense up at the thought of her struggling to transition back into her daily agenda. I get her bedtime back on track and hope for abundant sleep. I have explained upcoming changes to my nonverbal girl with visual schedules. I cross my fingers that her usual, sunny disposition will continue as we return to our “normal” life.

I bite my nails as my son resumes his online college courses. We’ve created a calendar for the whole semester and talked through anxiety provoking scenarios. Hopefully, he’ll start out strong and find great success again in this new year.

I miss the holiday season, but at the same time, I’m so glad that it’s over, too.

Time to start fresh. Time to get back to work on our goals.

We’ve got a brand-new year before us to be tackled. As we all return to our routines, may it be our best one yet.

January. Damp, grey, about 9547 days long… and my birthday month. After the excitement of Christmas, I actually don’t mind the slow pace of the first month of the year plus I’m more than a little thankful to have reached the grand age of 45 more or less in one piece! 2023 was one of our most difficult years to date – our amazing boy had to deal with significant worsening in his health, and the majority of the year was then a battle to keep him well enough for the spinal surgery he so urgently needed.

The last three months of the year flew by once he was safely through that, so to be able to celebrate another complete circuit around the sun with the men in my life meant a whole lot. The New Year always brings mixed emotions; hope for the coming year, sadness for the friends who we lost in 2023, and a potent mix of joy and fear that only families of medical fragile children can understand.

While we are overjoyed that our children are still here and fighting, there is a terrible fear that comes from knowing Winter is still not over and that it could be any one of us grieving.

For us, 2024 is the first year in a decade where we don’t have the spectre of major surgery hanging over our boy. It’s the year the Dude becomes a teenager – may God have mercy on us all – and the year when, with a bit of luck, things will be a lot more stable for him health-wise. The irony that this is just in time for puberty to hit and throw everything into chaos is not lost on me. Last week we had a neurology review with him and realised that with how unwell he’s been he hasn’t actually had his anti-convulsant medications reviewed since 2020!

Unsurprisingly, the dose he is currently taking is woefully inadequate; and thus the boy is beginning his year with a series of dose adjustments to bring his medications up to where they should be. He is less that pleased about this, however the hope is that this will give him much better seizure control again.

From my family to yours, happy new year – here’s hoping 2024 is a kind one, for all of us.