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.

Breathe

Being a parent or caregiver of a child with disabilities, you will encounter trying situations that will push you to your limit. It’s simply inevitable. Moments will arise in which you’ll feel the blood in your veins run hot while heavy stress consumes you. There will be times when you literally just want to scream out loud.

When we find ourselves here, we must rise above and remind ourselves to JUST BREATHE.

When someone utters the careless, thoughtless, cruel “R Word” in your presence…

When someone rudely stares or teases your child for being different…

When the insurance company takes you around and around on a carousel of never-ending prior authorization requests and denials, instead of helping you obtain the medical equipment your child desperately needs…

When you circle a parking lot for 20 minutes, searching for accessible parking, only to discover someone effortlessly hopping back into their vehicle, with no sign of an accessible tag or placard in sight…

As hard as it is, and before you explode, JUST BREATHE.

There will be times in which your heart aches and you can barely hold back a burning flood of tears.

When you’re sitting in an IEP meeting at your child’s school, forced to listen to the “weaknesses” and all the ways she falls short of her same aged peers…

When she is unable to communicate that she is sick or hurt…

When his anxiety takes over and you just want to “fix it” and make his life easier…

Before you lay down and surrender, JUST BREATHE.

There will more moments of pure joy and perfect love than you’ll be able to count, too.

You will experience magic and beauty in your life that most people can’t begin to imagine. Moments that will melt away all the worry and completely take your breath away.

When your child lovingly smiles at you and her eyes light up with wonder…

When you hear her most precious giggle…

When he wraps you in a tight hug, just when you need it most…

When you witness her reach a tremendous milestone that equals climbing a mountain…

Remember to pause, JUST BREATHE, and take it all in.

Complex epilepsy and our family

When I first heard my 18 month old had ‘just’ epilepsy and that tests had confirmed she did not have other potentially more scary conditions, I tried to think positively. I envisaged a few seizures here or there, but it essentially being a common, manageable condition that many people live with.

It hasn’t taken that path for us, unfortunately. My little girl (Taz, a pseudonym) who is now 8, has a particularly complex epilepsy that dominates our family life.

She has a condition called Lennox Gastuat Syndrome. Our gorgeous girl has multiple seizure types, tonic clonics, atonic (drop seizures), focal seizures, absence seizures, tonic seizures, myoclonic seizures and atypical absence seizures. It’s rather a long list.

Watching your child go through this is incredibly painful.

I now truly understand the meaning of the word heartache, and how physical that can be.

We have had many, many ambulance trips and hospital admissions. Calling 999 is now routine for us, no longer newsworthy. If an ambulance is in our street, most of our neighbours will assume it’s for Taz.   Complex epilepsy like this is a terrifying condition to live with.

It’s a beast that can jump out of the shadows at any time.

As someone with an existing anxiety disorder and who jumps at a toaster popping up, it’s a tough path to tread. That said, we have lots of happy times and in the course of living with this shapeshifting illness we have encountered so much kindness and support.

 When Taz is not having seizures she loves to play, ride her unicorn, bounce, run and go swimming.

Taz has been through about 10 different drugs and currently takes 4, she has a vagus nerve stimulator and is on a medical ketogenic diet (have a google of those last two if you want to know more). Nothing works to stop her seizures.

One glimmer of hope is medical cannabis.

Three children in the UK have a prescription for this after it was legalised back in 2018 but there is currently major issues with doctors prescribing it. Please do spend a moment looking at https://endourpain.org to find out more.

I have to be a firm advocate for my daughter; in hospital when it comes to drugs that are being given, at school regarding her care and to social care to ensure we have the support she needs. It’s exhausting but I realise my privilege in being able to do this.

Taz’s resilience is incredible and watching her bounce back after episodes and get back on her unicorn astounds me every time – she’s just magic.

For more information on epilepsy visit: Home – Epilepsy Action

Epilepsy Awareness Month

November is epilepsy awareness month.

As I have said previously – if you or someone you live with has epilepsy you’ll probably feel like everyday is epilepsy awareness day.

I remember as a child learning about epilepsy. The prospect of it absolutely terrified me. I remember being taught first aid for if you encounter someone having a seizure.

I lived in fear of witnessing someone having a seizure and being the one responsible for keeping them safe until an ambulance came.

To outsiders, the word “seizure” is absolutely terrifying.

When your child has literally 100s of seizures a day it can feel quite normal to say “oh she can’t talk to you right now she’s just having a little seizure”.

Often when I say these words the person will recoil in horror and I’ll say oh no please don’t worry, she has lots of these ones, they’re only little ones and she’ll be fine again in a second. It sort of becomes your daily norm.

The prolonged seizures do of course still terrify me.

I am thrilled to say that since starting a hospital prescribed ketogenic diet almost 2 years ago to day, Amy hasn’t required ANY rescue medication. There was once a time where a week wouldn’t pass without us needing to administer rescue medications so this is huge progress.

Right now for us epilepsy looks like: 2 different anticonvulsants twice a day, a rescue med to break up cluster cycles, a rescue med to stop a prolonged seizure, two blood checks a day for glucose and ketones, a rescue treatment for low glucose/high ketones, regular full blood counts and clinics at the city hospital with dieticians and neurologists, making a daily 24 hour batch of keto feed to be fed into the bowel via feeding pump 24/7, contact with a local epilepsy nurse and pediatrician, close monitoring of seizure types and length of time.

It might sound a lot, but compared to a few years ago we are all so much more knowledgeable in preventing and treating any issues that can arise as a result of epilepsy.

I still don’t fully understand the ketogenic diet and how it works.

I have sort of worked out that changing how the body creates energy (from fat instead of carbs) that this somehow rejigs things in the brain? Whatever the science behind it is – I am grateful for it, and it works for us.

In spite of the keto diet Amy still has 100s of seizures a day but thankfully these are partial/focal seizures or absences. Triggers for Amy include gastro issues, mood, tiredness, feeling unwell, many things really.

Whilst currently well controlled, it’s still an unpredictable aspect of Amy’s diagnosis and for us, currently comes second to chest/respiratory issues in terms of most difficult condition to manage.

I was told in our last clinic that Amy will need to be weaned off the keto diet in 6 months. I am terrified at the prospect. I am hoping that somehow her system has had a bit of a reset and that the seizures will stay how they are and not worsen.

The thought of constant tonic clonic seizures terrifies me.

I try not to think of SUDEP (sudden unexpected death in epilepsy) and the many other awful things epilepsy can entail. But without keto or our amazing team at RMCH I am very nervous.

If the wean goes terribly there is a chance we can return to keto, but generally they don’t like people to be on it fully for more than 2 years. 

Epilepsy has taken a lot from us. It has hindered development for Amy and did cause a regression too. She didn’t have seizures until around 5 years ago.

I noticed a sudden change in her movements and behaviour. I had asked many times for an EEG to be told what she was doing didn’t sound like “typical” seizure behaviour. But parents know.

We have a gut instinct when things aren’t right, and I’d like to think by now I have acquired an almost extra sense for these things. When you’re around someone 24/7 you tend to notice even the smallest things.

One morning I walked into Amy’s room to find her blue, foaming at the mouth, and convulsing. That moment will stay with me for the rest of my life. I think about it every single day.

I was no longer under any doubt that she was having seizures.

The EEG was done, everything was confirmed, and the awful process of finding the right meds commenced. The meds can be brutal. They affect each person differently so finding the right dose and type of medicine can take a very long time.

The side effects were absolutely horrendous for a long time. There were times when a dose increase meant that for months at a time Amy would be extremely moody and distressed and I would be calling the doctors crying my eyes out asking when it would get better.

How she has suffered whilst we tried to find the right treatment plan was harrowing at times. I am so proud of what she has managed to overcome and how she perseveres daily to not let these things impact her quality of life.

I hate epilepsy everyday. With a vengeance.

I see what other families like ours go through with it, many much worse than us. And my heart aches.

I am so grateful to the keto team at Royal Manchester Children’s Hospital. We have never felt so reassured, understood, and happy with a team.

I always wish every facet of our lives were as good as our experience with them. You get the feeling that you are working together for the same outcome. Not working against them, not having to fight your corner, not having to wait on long waiting lists or beg for funding.

Help seems to always be there by email or phone and always quickly responded to. When you’re helping someone manage a lifelong and sometimes debilitating health condition, this is precisely what you need in your life. 

I live in hope for advancements in medical technology to continue, be it laser treatment, VNS surgery, cannabis oil, new medications, anything to make life easier for those living with epilepsy every day.

I don’t yet know how Amy’s epilepsy future looks, I am nervous, but I am also hopeful and determined.

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.