The Path of a Caregiver: Surviving the Holidays

“Your word is a lamp to my feet and a light for my path” Psalm 119:105

Is there a person that relies on you for all their needs, most of them, or even just some of them? Either way, if you are a caregiver, you will have answered yes to this.

The holidays are busy enough, but when someone is a caregiver, life seems very overwhelming. One might become exhausted early into December and most especially before Christmas.

How can we enjoy the holidays and still be the caregiver our person needs us to be?

I know this is easier said than done for most of us, but you must take time for yourself. If you don’t it will only lead to burnout and exhaustion. This can lead to illness. We as humans need to rest and recuperate.

Keep an organized calendar so you can plan accordingly and look ahead at what you need to accomplish that day. Most importantly, try not to think too much about the days ahead. One day at a time and one step at a time.

Use your time wisely and listen to what your gut and your body are telling you. If you know you need a nap, and you have the opportunity to do so, take one.

Talk to others, and tell people close to you that you really need help. Maybe give several people some things that you could use help with. This way you are not putting too much on one person. If you don’t tell anyone you need help, there is no way for them to know. I know it would be nice if others just knew our needs and came to our rescue. I don’t like to ask for help, but I do so I can keep my head above the weeds.

It takes a tribe.

I love the way tribal Indians lived. A child is not raised up only by their parents.

For example: From the article “Family Life in the Culture of the Plains Indians” by Sally Painter “The elders of the family played a vital role. The women helped in child rearing and domestic chores. The elder men may have served on the chiefs’ council. They served their extended family as teachers, mentors, spiritual advisors, and confidants. The Plains Indian elders were highly respected by their family. The family took loving care of their elder members, and honored the infirm to ensure an honorable, dignified death.” (Family Life in the Culture of the Plains Indians | LoveToKnow)

In my opinion, this is what family is all about.

I find it extremely sad that family care, for some, is nonexistent. I often wonder, why are we here if we are not taking care of each other and being kind to each other with love and compassion? I believe this is one of the core reasons we are on Earth.

There are many other ways to take it slow and take care of ourselves during the holidays, and that should continue into the year. We all know these things, but it can’t hurt to say them anyway.

We can all use a reminder of what our bodies need, myself included: exercise (at least take a walk), comfort from a pet, plenty of sleep, eat as well as you can. I know, nearly impossible during the holidays. It can be really difficult to not have dessert at every gathering. I mean, we have to try our friends’ desserts! Take small portions so you can enjoy without overdoing it.

These are all things we know. My hope is that this blog will give you a little encouragement and strength. Remember to have fun and take time out to be silly.

Caregiving is a lot for one person, and no one can ever know what it’s like until they have walked the path of a caregiver.  


Christmas Is Coming…

Like many families of disabled children, we view approaching holidays with a sense of dread. That may sound dramatic, but it is the reality for families for whom school is not just about education, but is about essential respite.

The needs of my child are so great that she requires at least one to one care at all times, most of the time we cannot be more than a metre from her. Other times, when her seizures are very bad, we have to physically hold her on a harness as she walks around to prevent injury.

Being tethered to your child like this gives a whole new meaning to attachment parenting.

Christmas for us evokes all sorts of emotions, of course there is some excitement, but it comes with a sense of heavy apprehension. Will we get a seizure free day? Will we be in hospital? What would that mean for our other child? The weight of it is tiring.

Like birthdays, Christmas can also be tinged with sadness, it can be a reminder of the things our little girl cannot do or understand, for example Father Christmas, or the anticipation of presents.

It can be exhausting to try to come up with present ideas when her development is not linear, there are only so many sensory toys one house can accommodate…

It’s important for families like ours to know they are not alone and there are some brilliant groups on Facebook that connect families and provide a supportive space for discussion. The charity Contact runs one of these.

Over the years I have learnt to try to let go of expectation or pressure when it comes to big events.

It’s a bit of trite line, but it really is just one day. In my experience of being a parent carer there is much joy to be found all year round in the good times.

I find those good moments, hours, days are turbocharged with happiness, perhaps of an intensity that typical families may not get to experience.

So, while it will always be a special occasion, Christmas for us will never be laden with the expectation that it will be a highlight of the year, that’s just as likely to occur on another day, when my little girl says a new word or has a really happy day. It’s in these times that real joy and celebration lies for us.  

Being A Parent Is Hard

Being a parent is hard. Really really hard. It is an absolute privilege but let’s be honest here; it’s hard.

I have no experience of raising a neurotypical or able-bodied child. My experience of parenthood shares some parallels, but also it is vastly different.

Many of the challenges parents of neurotypical children face will eventually be outgrown (hopefully). For us it isn’t just “the terrible twos” or “establishing a good sleep routine”.

There’s no calling a babysitter when we need a break, it isn’t that simple. Now I am not for one moment underestimating the challenges that all parents face; my point here is to highlight that a lot of the things you struggle with regarding babies or toddlers, will continue into childhood, teenagehood (if that’s a word), and indeed, adulthood.

As the child gets bigger they can become stronger, louder, more dangerous to themselves and those around them.

Thankfully for us, Amy’s frustration/crying spells are significantly better than they were a few years ago, however today I am still reeling both emotionally and physically from last night’s bed time.

Amy is 8 now. She has severe quadriplegic cerebral palsy. Everyday she battles against the horrible side effects of several medications, manages extra pain to those around her, and has to make herself heard and understood without being mobile or able to speak.

I often wonder the level of isolation and frustration she may feel. Even resentment.

I am a very sensitive soul and deeply protective of Amy. I know it’s not realistic, but I want every moment of her life to be absolutely amazing, joyous and full of love. I have developed so much empathy, compassion and most importantly patience, for her “meltdowns”. (I am not sure if meltdown is the word now. Is it a crisis? Either way, a period of intense distress.)

Last night all of that went out of the window.

As with most children, they know how to push their parents’ buttons. I know I could be a little horror as a child and look back on my actions (especially as a teenager) with embarrassment and remorse. However when Amy has one of these episodes, she isn’t aware that she is pushing buttons. In that moment she is completely at the mercy of whatever her brain is putting her through.

As I was saying goodnight I could see an absolute rage wash over her. She was consumed by it.

She was hitting out, kicking, screaming, trying to rip out her hair. 

All you can do at that moment is try to keep everyone safe and keep breathing. Remind yourself that this will pass. Remind yourself that this isn’t about you, it’s about her. She’s struggling right now and needs your support. 

Eventually she was out of breath, breathing fast, retching, and had a very high heart rate.

My instincts told me to check her blood ketones and glucose as previously she has responded to ketoacidosis in a similar way, and if it was that – then it’s a medical emergency.

As I tried to calm her and check her bloods she swiped the finger pricker out of my hand and the needle gashed my hand. Blood was going everywhere. I scrambled for a tissue but didn’t want to risk her falling from her bed. 

My second attempt – she kicked the lancet out of my hand meaning a loose needle was in her bed. As I attempted to locate the missing needle she kicked me in the face causing a fat lip.

When Amy’s moods are strong her movement disorder switches it up a gear and one unfocused moment will mean a nose bleed. 

By this point I was feeling fearful, upset, and quite frankly annoyed.

I shouted at her to sleep. The anger intensified. I suppressed tears and told myself to calm down.

In the end I needed to administer chloral hydrate to sedate her. It’s a decision I don’t take lightly and I only use it in extreme situations.

For days after I feel upset and guilty about it and need constant reassurance that I had no choice and that to leave her that distressed is unfair.

This morning she woke up, perfectly happy, as if nothing had ever happened.

The relief is palpable. My beautiful happy girl is back. Morning meds kick in and she goes sleepy. I hope that smiles will return later. 

I am still carrying the stress today. I can feel it all over my body. I wish I had been calmer and quieter. I never ever shout at her. It doesn’t help a stressful situation. But I know that often this is what happens to a parent when they are pushed.

I feel terrible now. Proper Mum guilt.

I worry if this will happen forever randomly. It only happens every now and then but when it does it knocks me for six. 

I had some spare time so I managed to squash in a dog walk and a gym session. I didn’t want to do either but I needed those stress hormones to subside. I feel better now than I did earlier.

I am focusing now on staying distracted, staying positive, and working to be a better parent tonight. I told her I am sorry and told her how much I adore her. She just smiled and laughed and touched my shoulder.

I suppose the purpose of this blog is to say – it’s okay to have a wobble.

It’s okay to struggle. You’re doing your absolute best and can’t be perfect 100% of the time. Today is very much a new day and whichever Amy returns home from school today I am going to be absolutely delighted to see her.

If you are struggling with similar – please don’t suffer alone.

If your mental health is being impacted make sure you get yourself to a doctor and see what support is available.

You can only be your best you when you are looking after yourself. I know that is easier said than done, but it’s so important.

The Thief and The Warrior

For over a decade now we have lived with a thief in our midst. It comes at any time of the day or night, taking precious memories and skills at will. It is up against a warrior who fights it day and night, with courage that is far greater than anyone of his years should ever have to display.  

For a brief period of time in 2011, we were a ‘normal’ family; the shadow that is epilepsy was yet to enter our lives at that point.

Even when that first seizure happened one hot August morning at the children’s centre, and in the weeks following, we still had hope that our boy’s epilepsy wouldn’t impact too deeply on his life.

By December however it was clear that the thief which had already stolen so much of our beautiful baby’s early skills was here to stay.

That is what epilepsy is really, a thief that doesn’t care who you are or what you do. It will come when you least expect it and will knock you off your feet.

The last decade has been a steep learning curve.

Did you know that not everyone loses consciousness during a seizure? Or that focal onset seizures only affect a part of the brain, while generalised ones affect the whole?

I am deeply privileged to have a child who is my greatest teacher and who has taught me what it is to get up and fight the same demons that left you exhausted the day before (and in his case, that didn’t stop attacking even though it was night).

He has the type of epilepsy that comes with claws and teeth – a devastating side-effect as it were of a brain that didn’t quite form as it was meant to. As his mum I carried crippling guilt about that for many years.

After all, my boy’s seizures are relentless… they have stolen his ability to speak, to walk, even to sit unaided. He is unable to swallow safely, and despite multiple medications and the medical marvel that is a VNS he still has multiple seizures daily.

Our children are genuine superheroes.

My boy has a love for life that makes the darkness shrink back, his smile brightens the most difficult of days and his sheer delight and excitement when doing something he enjoys is contagious.

Because each skill learned is a triumph; each achievement, however small, is a victory that deserves to be celebrated from the rooftops! I’ve said it before and I’ll say it again; my son may have epilepsy. But epilepsy does not and never will have my son.

Just Breathe

A lot goes on in my head sometimes, most days too much to even think straight. Juggling family life, appointments, work and everything else life throws into the mix is hard work even without adding in the complexities of a medically exciting child!

If nothing else, the recent pandemic has made me re-evaluate a few things and reprioritise… my work/life balance is sorely in need of attention for one thing, and like most my mental health has taken a battering.

So, it was with a gleeful grin that Mr V and I booked ourselves a few days away over half-term with the Dude to give us the chance to spend some much-needed time together as a family, and to catch up with friends we haven’t seen in far too long.

It is always during this precious time away from the chaos of our daily working lives that I manage to carve out a bit of time to just decompress and unwind – somehow it never quite happens when we’re at home. There’s always something that needs doing, whether its housework or another form to fill in, and appointment to chase up or an email to answer… its never quite the right time to down tools and stop. So, while away, I allowed my brain to do precisely that.

Being surrounded by nature has always been my greatest healer

Technology has given us many great things, without it my son wouldn’t have as good a quality of life, however for me it feels toxic and constraining at times. Being contactable anytime and anyplace is not a natural state, nor does it allow us to be all that we are.

Being in a woodland, or in the mountains allows my brain to relax and for me to regain some perspective. We are lucky enough to live in a rural area, surrounded by woodland, fields and a nature reserve which almost backs directly onto our garden – this is not something everyone can say!

But even within a city, there is always some form of green space where you can go and relax. As special needs parents, it is so important that we look after our own health, physical AND mental, to allow us to effectively care for our children. That is even more the case when we feel we don’t have time to do so, as that is the point when we are approaching our limits.

Do yourselves a favour and allow yourself time to stop and breathe. Your mind will thank you for it.

Painfully Aware

There is a monster that lurks in the shadows, always just one step behind.

It crouches and stalks, silently preparing to strike when you least expect it. You always know it’s there, and you do everything in your power to stay two steps ahead of it.

Epilepsy is a beast that will turn everything upside down in an instant. It is a thief of peace, and it leaves fear, heartbreak, and total chaos in its wake.

November is Epilepsy Awareness Month; families like mine are painfully aware of its existence EVERY DAY. We must remain vigilant, never letting our guard down.

When your child has a stretch of seizure freedom, it is truly something joyous to be celebrated.

With the celebration always comes cautious optimism. “How long will this season of peace last?”

We’re always aware that the monster could be right around the corner, and we can’t become complacent in our efforts to keep it at bay.

My daughter’s routine has rigid rules built in that we follow strictly.

We are aware of her many triggers, and we constantly battle to keep them under control. Meds must be administered on time. Always.

She needs plenty of sleep and hydration. We stay away from crowds and try to avoid illness as best as possible.

She is nonverbal and unable to communicate to us when something is “off” or just not right, so we take her temperature frequently.

Sometimes, there is no rhyme or reason when the stalker shows up. Painfully, we’re aware that’s just part of its nature.

Every single time Epilepsy rears its ugly head, our entire family is left reeling in its aftermath.

We’d give anything to shield her from going through it; to protect her from its wrath. It has a way of traumatizing us all, each time, and it never, ever gets easier.

We desperately try to stay calm as we pray for her to break free from its grasp. Every member of our household knows their part on the team when it happens, and we work together as a cohesive unit to help our warrior girl fight through.

We have her back in this fight, and we always will

We’ll share information with others and advocate for her in November, and in every other month of the year, too. We’re painfully aware of Epilepsy and all that it brings with it.

Aware of the toll it takes. Someday, we hope a cure will exist and the monster can be defeated. In the meantime, we trudge on and continuously watch over our shoulders.  

Kidz to Adultz

We recently attended a disability equipment/services exhibition in Manchester called Kidz to Adultz. We have attended it every year now since Amy was born.

One of the unexpected and best things about it is the social aspect. With each year that passes, our network and community grows and becomes more interlinked. 

I bumped into a fellow Firefly blogger, charity (PEEPS – HIE) owner, and friend, mum of Heidi, and mum… Sarah Land. We were talking about the complex health parenting journey (or whatever you like to label it) and we were talking about our first visits to these exhibitions.

We reflected on our early days as parents in this world of disability.

We were still in the “wait and see” stages, not having any idea what our futures would entail.

I remember walking around the exhibition and feeling entirely overwhelmed. Surely we won’t need a wheelchair van? Why are there hospital beds with padding on them? Why is everything so medical and mechanical looking? I don’t understand any of this… maybe this isn’t for us. 

So other than to look at the Firefly stall (which by this point we already owned ALL of their stuff as it enabled us to use shopping trolleys, park swings etc) it made us feel further alienated, scared and confused.

Fast forward to today, Amy is almost 8 years old. 

Our experience here is now entirely different. We see the “hospital looking bed” and say WOW look at the colours it comes in!! We see the wheelchair vans and are impressed at all of the different ramp options and seating configurations.

Pretty much every stall here is relevant to us now… and do you know what? We don’t feel alienated, scared and confused. We feel excited – what great pieces of technology have come here today that could make our lives easier, more fun, safer etc.

Sarah said to me. “What changed for us all?” and this was a great question.

I think the answer is time.

Time is a healer. 

I remember being told many times that things would get easier. That we would adapt. That the grief will fade. I remember feeling hot with anger and trying to suppress tears when hearing this. How could anyone know that?

I never expected that we would be the ones needing ALL of the expensive medical equipment. I never thought I would be excited at a hi-lo bath, or a wheelchair accessible easel. But here we are.

We have come so far. With time has come acceptance, understanding, awareness, and so many other things.

There are still days where there are traumatic flashbacks. There are days I just want to cry and can’t understand “why us?”. There are days I wish things could be easier for us all. But we are in a different place now.

We know the future isn’t certain, and Amy has been through more in her 8 years than many will in a lifetime. We don’t take a single day for granted, not even the really difficult days. 

I’m not sure life even became any easier, I think we have adapted and became more resilient. 

Our life is still packed with appointments, admin, meds, ambulance trips, hospital admissions, the fight for services and equipment, the fear of vital services being withdrawn etc. Amy is heavier now, her equipment is larger and her health needs have increased vastly over the years; and yet all I can think about right now is when our extension/adaptation work is done on our house and she can relax her sore legs in her very own hi-lo bath. 

Life doesn’t look how we had planned, and I have learned – never plan!! What happens will happen. All you can do is hope to have your loved ones by your side supporting you along the way, be grateful for every little thing, and to cherish the happy memories you make amongst the chaos.

Appointment anxiety

Half-term is upon us – not entirely sure how that came round so quickly but here we are.

As is always the case with the Dude, he has taken all the changes that the last couple of months have brought in his stride.

I do want to know however who is the monster who thinks it is acceptable to schedule in multiple hospital/clinic appointments and/or reviews in the space of two weeks just as he is getting settled into a new school routine?!

Seriously people, the entire summer passed with barely a whisper from the appointments office and yet as soon as term began…

One of the appointments I dread more than any other are his spinal reviews.

The Dude developed scoliosis, at 4 years old. Like so many children with his neuromuscular issues, the weight of the head is just too much for the muscles of the spine to support so the spine gradually curves over to the side.

We know surgery is the only way to ensure that the spine is stabilised and prevented from curving to the point that it crushes his heart and lungs, but that is not something anyone wants for their child.

This time, we’re seeing his surgeon.

Thanks to covid-19 it’s been A While since we’ve seen him, and he is concerned that the chaps spine may be reaching a level of curvature where difficult decisions around surgery can’t be postponed.

It’s the appointment I have feared for almost 7 years. I spent much of the afternoon sitting in the waiting room while the Dude and his Dad are down in x-ray, trying to hold it together.

I have no idea why scoliosis terrifies me so much – after all, we have lived with uncontrollable, life-threatening epilepsy since he was a matter of weeks old, and yet there is something so insidious about the way a curved spine will slowly continue to worsen, gradually causing my child increasing pain and disability, that eats away at me.

And is so often the case with these amazing little people, the appointment went better than we could ever have imagined – a combination of excellent postural support from his wheelchair, a superb sleep system than he actually LIKES (I kid ye not), and a dynamic orthotic suit that supports his spine means that his scoliosis is relatively stable… surgery can wait for a bit longer.

Fingers crossed we can keep him well enough that surgery can wait until growth rods are no longer required and he can have a single surgery to fuse his spine and sort this scoliosis once and for all. As ever, hope is the thing we hold on to, while our amazing child continues to shine.

Time to process – Complex Health parents & stress

Sometimes you can’t live in the moment. What if it’s an especially traumatic and challenging moment?

How do you recover from stressful events? How do you navigate them whilst they are happening?

Yesterday Amy was in pain with some acute skin problems. The result of this was that she was emotionally and physically distressed.

When she is distressed she rips at her hair, she pinches and kicks those around her.

She is impossible to console in those moments. All you can do is remain calm, and patient, and try your best to prevent injury.

Thankfully these moments happen less than they used to, but at the time I can feel my stress levels going up and up.

My jaw tightens and clenches, my muscles tense, and my heart rate increases.

In that moment all you can do is keep breathing, and remind yourself – this is how she communicates pain, this moment will pass.

Recently, Amy has had a few ambulances due to respiratory issues.

In those moments she is blue, struggling to breathe, retching, and looking lifeless. Adrenaline kicks in and I reposition her, check her obs, suction her, reassure her, and explain what I am doing.

I call for the ambulance. My chest is tight, my legs are weak. Outside I am calm. Internally I am a mess. Just get through this moment. The paramedics will be here soon, she will be fine, and we will all be fine.

In the ambulance my back twinges as I struggle to reposition my panicking child.

She is on oxygen and awake now, but highly distressed. Staff keep telling me to keep her upright, and I explain again that this isn’t possible with Amy.

The blue lights now are on to get us there faster. We’ll be there soon, this is temporary, this is about her, not me.

Continue to try and comfort her and stop her from injuring herself.

In the hospital I remain calm as I explain what has happened for the third, maybe fourth time.

I reel off her list of medications again, for the third, maybe fourth time. This is the process – don’t fight it. Just be patient and explain it. You’ll be home before you know it, hopefully.

Fast Forward a week.

Things are now much better health-wise. Life-threatening problems are now replaced with usual mundane daily problems like replacing faulty medical equipment, chasing meds from the hospital, and finding space to store tube feeding supplies.

We are on a nice family day out. The Autumn air is fresh, the sun is shining, Amy is in a good mood.

Immediately we are faced with “what’s wrong with her? Why is she in that chair?”.

I am grateful people ask – it’s better than staring, or ignoring. But my heart sinks a little. Why do we need to stand out? Why can’t we just have a friendly interaction that isn’t centered around Amy’s disability?

Inwardly I yearn to just be normal, to be boring even. What a novelty boring or normal is. I breathe through it and put on my friendly happy voice and explain once again that cerebral palsy is how the brain controls muscles and so on.

I make a call to chase some meds. I pray internally that the receptionist speaks kindly to me.

I sense the frustration in her voice as this is the third time I have called in a week. I remind myself to breathe and stay calm.

Don’t lose credibility and cry. “Why can’t you go to the GP for these meds?” I answer for the third time in a week.

I fight the urge to be sarcastic or emotional and explain that these meds are hospital only. I try to make polite small talk.

It goes ignored. I tell myself – maybe she’s having a really bad day or is extremely busy – don’t take it personally, don’t let it affect your day. 

In just writing this I feel myself tighten up and feel angry.

Sometimes it doesn’t feel fair to have to internalize so much sadness and frustration.

For now, in this quiet moment, I can process it all. I can take some time to enjoy a hot coffee, knowing we are home and that all is well.

I can enjoy that my phone isn’t ringing, all of my loved ones are safe and well, and I can be proud that we all made it through.

Sometimes you can’t live in the moment. Sometimes you have to endure the moment knowing that better moments are to follow.

Sometimes those moments you endured will catch up with you and eat away at you.

What do you do to deal with this?

Personally, I have anxiety medication, and counseling, and try in my spare time to get on walks and to the gym.

Exercising definitely impacts your mental health. It can lower your stress hormones and help you release feel good chemicals.

Some days I’m too fed up and exhausted for that – and that’s okay too. You have to listen to your body, and when time permits – give yourself chance to heal.

It sounds cheesy but self care really is so important. It’s harder to get in our lives as it can be so unpredictable. But any moment you can, try and do something for yourself and really savour and appreciate that moment.

If you are struggling – please go and see your GP. Talk to someone. Don’t just wallow and suffer.

Life is challenging for everyone, but when you have a child with complex health it is a constant concern over their health, and navigating the often difficult system that surrounds them.