Living with Epilepsy

Two of my daughters have been diagnosed with epilepsy.

Elizabeth had her first seizure when she was just six months old. A very healthy and happy baby up until then, it came as a complete shock when she started having grand-mal seizures.

It was very scary to witness your little infant seizing- eyes rolling back in her head and going blue and limp, then shaking, foaming at the mouth and her whole body contracting in a terrible fashion.

I felt completely helpless as a mum.

I hate seizures.

After ED and specialist visits, EEGs and MRIs, she eventually got a diagnosis of “childhood epilepsy of unknown origin”.

Elizabeth is 10 years old now and thankfully she is pretty stable on her epilepsy meds. Her last bout of seizures were a year and a half ago when she was trial weaned off medication and then ramping back up to a therapeutic level.

I don’t know if she’ll ever be able to come off her meds. The doctors had hoped she would outgrow her “childhood seizures” but after we tried to wean her off drugs her seizures came back with a vengeance.

I mainly worry about her in her sleep as well as when she learns to drive, or what could happen if she fell and knocked her head badly during a seizure I don’t like to dwell on these “what ifs”.

My youngest daughter Brielle is 8 years old now and had her first seizure when she was 4.

Her seizures are more subtle involving gulping, drooling, vacant expression, loss of colour and usually some shaking.

Brielle was born very prematurely, she suffered a brain bleed and resulting Cerebral Palsy.

Hence the doctors tell us that her threshold for having seizures was lower than the average person- ie. it is not surprising that she’s developed a seizure disorder.

We are so thankful however that at the moment both girls are well-controlled on their daily medication.

I really do hate seizures and have seen more than I’d care to remember. We’re well used to emergency medications and care plans, and trips to the hospital. It helps to be a nurse mommy too.

So we are living with Epilepsy in our family.

These are our beautiful youngest two daughters on Halloween. Happy little rascals!

Language and Laughter

My darling son said his first words recently.

For six years, he has listened to language swirl around him while having little to no opportunity to participate.

But last week, he called his dad who was in the middle of teaching a high school math class and said: “Hi dad!” He said it loud and clear while his teacher, mom, and dad cried, and high school students in math class cheered in the background.

It. Was. Beautiful.

Did my son’s vocal cords speak the words? Not exactly. Instead, my son used an eye-gaze communication device to make his voice heard.

The days since the device came have been a whirlwind as our boy delights in scrolling through words and phrases and locks his gaze on an icon to make the words bellow out.

While he is still learning the device and has a lot to learn before we can hear his deepest thoughts, it has been pure magic to watch him answer questions and express needs.

I thought the best part of my boy having his communication device might be no longer wondering what my son is feeling or needing.

As a mom, it is heart-wrenching to know my son is unhappy one day and not know why.

However, my favorite part of hearing my son speak is when he pulls up the communication board entitled “Jokes” and we hear the same phrase over and over: “Do you want to hear a joke?”

He will click the same icon repeatedly until we come into the room and assure him that we indeed do want to hear a joke.

He then proceeds to tell us the same cheesy joke we have heard over and over again.

Every time, he anticipates and delights in our laughter.

It is a gift to know that my son can tell me what he needs, but it is straight up breath-taking to watch my mischievous boy be the jokester he always has been—just much more loudly.

My son is thankful that he can tell us when he needs repositioned or feels sick.

But when he tells us a joke, he comes alive in a way I used to dream about.

Language is of utmost importance, and every human deserves the opportunity to access it. But language is so much more than an expression of words.

Language is an expression of who God created a person to be–the unique pieces of personality, emotion, and being.

I am beyond thankful to share in this most precious gift with my son.

A kind heart

What is the most important thing about a person?

I recently discussed this with my son; he is four and has Spinal Muscular Atrophy.

This condition affects his muscles and he pretty much needs full assistance to do anything physical.

He cannot walk and uses a wheelchair to get around. Most days he accepts this as his normal and doesn’t complain.

However, a few weeks ago we had a wee wobbly day.

When I collected him from nursery he was quite tearful and wasn’t himself. He was very quiet on the way home and when we got back he wanted to go straight to bed to lie down.

He then told me that he was worried about something and asked if he should be worried about it or not.

Eventually he told me it was his legs “should I be worried about my legs”? He told me he’d just seen everyone else running around the nursery and he wasn’t able to do that so it was making him sad and worried.

What followed was a discussion about how he was feeling and he amazed me with his faith and strength of character.

I asked him what he thought made a person special, what did he think was the most important thing about a person.

He replied that a person’s heart was the most important. He said that he had a kind heart and that had to be more important than having walking legs.

His four year old mind was much wiser than its years as he told me it’s his kind heart that makes him love people and helps him make people laugh.

We talked about how some days it might be frustrating for him that he can’t walk but actually with his kind heart he can achieve anything that anyone else can.

I asked him what he would tell people about living with Spinal Muscular Atrophy and his reply made my eyes fill with tears – he told me he would want people to know “miracles happen every day”.

I hope he always remembers our little chat, on the days where he maybe feels a bit sad or frustrated.

I hope he knows how special his kind heart is, how far it will take him and how much people love him for it.

Autistic Children and Mental Health Hospitals

Earlier this year a Tweet struck me deeply; it affected me like very few Tweet’s have before, and as you can imagine for someone working in the disability field that’s saying something.

It was a Tweet from Rachel Lucas of Sky News (@RachelSkyNews), who had been doing a piece about NHS inpatient care for people, including children and young people, with mental health conditions, learning disability and/or who are Autistic. Along with a photo, this is what she Tweeted…

“This photo is of a parent visiting their autistic teenage child in a hospital in England. Holding hands through a hatch in the door to their room. This is mental health/learning disability/autism inpatient care at the moment. How can this be right? This is heartbreaking.” Rachel Lucas @RachelSkyNews

I saw the image, I read the Tweet, and tears filled my eyes.

I imagined that this was my 17-year-old son, James, who is Autistic, has learning disability, and has experienced mental health issues over the past couple of years.

A little later, as I calmed down a bit (but not much!), I retweeted Rachel’s Tweet, commenting as follows:

“How, for the love of all things good, in a progressive, developed, prosperous nation, can this be allowed to happen. This is a national disgrace; it brings shame on us all. It has to stop. Please Retweet this as much as you can. #MentalHealth #Autism #LearningDisability #Children” @Mark_J_Arnold

Rachel has been researching into this issue for a while, see the article she wrote for Sky News here:

(Warning, it’s a heartbreaking read)

Her article shines a light on the atrocities that are being committed all the time to children and young people, as well as adults, by a system that is clearly not fit for purpose.

Rachel quotes one Mum who says, “My Autistic son deserves a life, but he’s locked up.” before highlighting that her son has been in secure residential care for 17 years!

The views of families seem to be ignored by a system that seemingly can’t cope, clearly doesn’t provide appropriate staff training, but that has ultimate power over the futures of those who are referred into these secure units.

As Rachel points out in her article, challenging behaviour is often used as a reason for institutionalising young people with mental health issues, learning disability and/or who are Autistic;

“Normally, challenging behaviour is a sign of an unmet need. And that misunderstanding is what campaigners argue leads to the overuse of restraint, sometimes face down, seclusion and sedation. One family we spoke to told us how their son was banging his head against a wall. Rather than assessing what may be the reason for this behaviour, staff restrained and medicated him.

He is non-verbal and was unable to communicate that he was suffering from a severe ear infection. That is not challenging behaviour, he was in pain. What is obvious is that using restrictive interventions, like restraint, can in fact lead to the deterioration of someone’s well-being and mental health and can have a long-lasting impact.”

Last week, it happened again.

Another news article highlighting this same issue appeared on the BBC News website: Seemingly, nothing has changed since Rachel’s investigation earlier this year, the same atrocities are still happening.

People are dying in these institutions, 40 over the past 2 ½ years alone, nine under the age of 35-years-old. 250 children are incarcerated in this way.

This is happening in the United Kingdom, in 2019. This could happen to any of our children and it’s happening on our watch.

As Rachel points out in her article, “The shameful part to the story is that everyone involved knows what needs to happen but years after government commitments, words have not been turned into actions.”

It needs to end, now. We all need to campaign for the sake of all of our children until it does.

The cost of invisible illness

November is Epilepsy awareness month.. and also for Complex Regional Pain Syndrome (CRPS, or RSD).

Sam’s Aunty has lived with CRPS for the majority of her adult life. Sam and I decided we wanted to raise awareness about this too, as it is little understood but life changing.

CRPS is the most painful chronic pain condition known; more painful than digit amputation and non-terminal cancer.

It is constant. There is not a moment when you don’t feel like you are being burnt alive.

Often it is triggered by an injury; surgery for example, but not always.

It can affect any part of the body internally and externally.

There are so many more symptoms than just pain; discolouration of nails/skin, swelling, skin temperature changes, extreme sensitivity to touch (allodynia).

It is almost always life-long; and with no cure and limited therapy/pain relief options, it is a truly horrific condition.

Sam’s Aunty is awesome. Despite the agony, she gets on with living – forcing herself to walk to the shops, cooking, cleaning, looking after her family.

She has internal organ dysfunction as an effect of the condition. She gets onto Sam’s level and plays with him, keeps him safe during seizures, even though the cost to her is immense and she will pay for it for days.

You will never hear her complain, even when the pain is so great that her eyes betray her even when her face does not.

This lady has supported us since Sam was teeny; she has helped me see the wood for the trees, and not to lose myself to panic.

She taught me that life with serious health issues does not mean a bad life; acceptance comes with time. It is ok to go through the stages of grief, you will come out the other side.

She teaches my son the same, and he learns from her that anything is possible.

Many GP’s or consultants don’t understand the condition, family and friends can’t understand why patients aren’t improving.

It’s easy to underestimate the courage it takes to keep on living, not just existing, when your body has turned against itself.

Living involves doing; to do that you need strength of body and mind to keep smiling.

Invisible disabilities are as real and debilitating as any other. Be kind, you don’t know what someone may be dealing with.

When your child has a Rare Diagnosis

When your child has a rare medical diagnosis, you may often feel as if you’re alone, navigating some strange planet.

Aspects of your life that would have once seemed completely foreign, become your new “normal.” Parents may not experience the journey in an identical way as others, but I’m certain that we share many commonalities.

When my daughter was diagnosed with a rare genetic disorder, there was no guidebook or manual presented to us on how to cope.

We were not handed a pamphlet with concrete answers to all the mysterious questions that would arise.

When your child has a rare diagnosis, all that you thought you knew about child rearing is thrown out the window. I wish someone could have listed out the following predictions for me, when my child received her very rare diagnosis.

You will grieve. When you look at your beautiful, perfect baby, it’s hard to swallow the fact that life will be challenging for her.

It’s not easy to process that your own life will forever be “different.” Grief is cyclical; it will come and go in waves over the years, at times hitting you, HARD, when you least expect it.

It will knock you down, but you will learn that it doesn’t have to drag you under. The waves will recede and you WILL get back up.

You will cry. There will be so many times when you just wish you could magically “fix” things, so that your baby doesn’t have to struggle.

You will yearn to trade places with her and you’ll desperately want to take on what she’s going through, in exchange for her having to endure it.

You will become an expert on your child. YOU will be the one informing doctors, therapists, and teachers about her, instead of the other way around. You will seek out all the information that your brain can hold, and you will be more skilled and trained than anyone else, when it comes to the care of your child.

You will feel defeated. You will rejoice in the fact that you figured out the solution to a problem, celebrate that victory, all to see another, bigger issue spring up.

Crushingly, you will think that you have failed. However, you’ve merely ruled out one explanation, while learning something new in the process.

Your problem-solving skills will be elevated to a whole new level. Soon you’ll see that you are like a sleuth; your detective work and resourcefulness could rival any professional.

You will WORRY. You will know real fear. You will stare it in face. The “unknowns” will cause you tremendous anxiety.

You will become STRONG. Your personality will undergo a metamorphosis; you will take on a fierceness that you never could have imagined. You will fight hard, time and time again for your child, and you will not back down.

You will gain unlikely friendships that become a lifeline. Other parents that have children with your child’s diagnosis will become like family to you. You will find each other and learn a great deal from each other.

You will form a bond with parents from all walks of life, now walking in the same shoes as yours.

You will become passionate about helping others. Your heart will be transformed. Great satisfaction will be felt in assisting another parent that has been handed a rare diagnosis. If there’s anything that you can share, or any way that you can give back to make their path less rocky, you’ll do it.

You will LOVE. The indescribable love that you will experience is unlike any other you’ve ever dreamt of. Your devotedness to your child will be immeasurable – it CAN and WILL move mountains.

You will admire. There will be so many qualities in your warrior child at which you will marvel. Every milestone hit and every success will make you so very proud.

You will possess a sense of pride so big that you’ll feel as if your heart will surely explode. Be prepared for this to occur over and over again.

You will be grateful. You’ll be filled with immense thankfulness and you will find yourself overwhelmed with gratitude.

An appreciation for life will grow within you; it will remind you of all the things you once took for granted. You will suddenly see beauty existing all around you.

Above all else, you will feel JOY. At the end of the day, you may be tired and weary. You will have given every single ounce of yourself and you’ll be exhausted, but oh…the JOY.

Revel in it. Breathe it in, deeply. Holding your precious child in your arms, knowing that she is YOURS, will make every step of this journey worth it.

Hang on tightly; together, you’ve got this.

Can I join your club?

On the 15th of November, I went to a conference all about Duchenne Muscular Dystrophy run by Action Duchenne, a charity who have offered me a huge amount of support since Sebastian’s diagnosis.

I spent the weekend attending sessions about every aspect of Duchenne, from physio demonstrations, advice on housing adaptations to a session about the affect on healthy siblings.

Before Sebastian’s diagnosis if someone else going through this had told me they were doing this, what would my impressions been? A weekend of having the diagnosis thrown in my face? A weekend of grief stricken parents crying? A confirmation of everything that is awful about Duchenne.

My feelings now? I love it. And here’s why.

When Sebastian was born, a slight paranoia I had about feeling lost and lonely and spending my days alone with a crying baby meant that instead I threw myself into baby groups, baby massage, baby swimming classes. I had done NCT classes.

I was very lucky that while many struggle with those early days, I finally felt like I had found who I was meant to be.

Not in the baby groups – let’s be honest, no one find themselves by awkwardly singing nursery rhymes with people they barely know to babies who are too little to care.

But in everything motherhood gave me. I believe that my happiness lead me build a strong network of fellow mummies.

And I’m not going to lie, the nursery rhymes may not have floated my boat but there is little doubt that the shared experiences of early motherhood, with its sleepless nights and life changing love, were powerful.

Two and a half years in, pregnant with number two as many of us were, Sebastian’s diagnosis pushed me out of a club of which I had so fiercely loved being a part.

That isn’t because I am no longer welcome. To this day, some of those people count among my closest friends.

In fact I could not be more welcome, yet at the same time I no longer quite fit. My world turned upside down and it can never be the same.

However hard I try to right it, it will always be off-kilter with the one I knew and I will always be off-kilter with the person I was.

Experiences are not shared as they once were and our journeys which started off in parallel are on very difference courses. I am not ashamed to say that I still miss that sense of belonging.

So rather than it being morbid or negative to spend the weekend with Duchenne as my focus, the opposite is true.

The power in that shared experience is multiplied and magnified.

Perhaps that’s because we all grieve it in our day to day lives and crave that sense of unspoken understanding, I will not have to explain the burden I carry.

It will be acknowledged without the need for words. I can share my life with Duchenne in all it is rather than feeling that it should be minimised, squashed into a corner.

I can let my brave face go. And there won’t be any nursery rhymes.

While the knowledge I gain from the sessions I attended will give me so much to take forward into my life, the true power is to be with people who understand the life altering moment that my son was diagnosed with DMD.

It is to know that there is still a club out there that I belong to.

When plans get cancelled, again and again

At the beginning of last week, Jaxon was unexpectedly ambulanced in to hospital for an uncontrollable seizure.

Whilst there he was admitted and treated for a suspected chest infection and placed on airvo for three days.

It was a week full of planned days out. It was the most packed week I’d anticipated since Jaxon had been discharged from hospital in August.

I was looking forward to getting out and about with him, doing normal things. Another hospital admission wasn’t even on the radar.

Jaxon has overcome several colds without any medical intervention of late and he seemed to be doing okay.

My mood took a real knock when I discovered he’d be admitted for at least a few days and I realised just how difficult it was going to be to make plans in the future, especially around this time of year.

I sat in the same hospital environment that we spent last Christmas and the majority of the summer this year, thinking about everything we’d missed out on and the things we may go on to miss out on in the future.

We missed spending Christmas at home, we had our Christmas Day in January but it wasn’t the same. We missed out on all the summer fun, the family days out, the walks in the sunshine.

Life just passed us by whilst we were sat staring at the same four walls of a plain, boring hospital room.

I felt sad, I felt angry. I argued with the nurses and doctors about the fact we were stuck in there again. I wasn’t convinced that Jaxon needed to be on airvo given that his sats were stable, his chest x-ray had come back clear and his bloods were all fine.

But my energy resources were entirely depleted. That place has that effect on me.

The same hospital where all this started. I’d rather spend as little time there as possible, not to mention I worry about the effect it has on Jaxon.

I had to go along with what they advised though as they’re the experts and they’re supposed to know what’s best.

It got me thinking though whilst I watched the hours pass me by as I sat by Jaxon’s hospital cot.

How do parents and families of children with complex needs deal with the disappointment when plans are compromised because of their children’s medical needs? How do they plan holidays and days out when they know there’s a strong possibility they could be cancelled?

It goes without saying that my child’s health comes first above everything else and as long as he is well then ultimately, that’s all that matters.

I would never compromise his well-being for the sake of a day out, I’m the first to say he needs to go to hospital when it’s obvious that he’s struggling.

But there is so much about our life that is different to the families of typical children the same age as Jaxon. Sometimes I just want us to feel normal. For just one day, maybe even one week, just for a while.

It’s difficult enough that when we go out I have to make sure I pack his feeding pump or that if I want to get him out of his pram I have to be aware of his lack of head control and core strength, as even at one year old he still needs full support for a cuddle.

I have to be aware that he can’t enjoy the world around him like other children his age due to his visual and hearing impairments.

But that doesn’t stop me wanting to try to get some enjoyment out of this life we’re living.

So understandably I was disappointed.

The irony of it all was that Jaxon was discharged from hospital on Friday night, just after all our planned trips had passed.

Typical. But we went home, got into our Children in Need onesies and had a night in front of the TV.

I still felt sad about everything we’d missed that week but I was glad to be in the comfort of my own home once again, with my boy by my side.

If I could wrap Jaxon up in a completely disinfected bubble I would, I’d do anything to keep him at home.

To keep him here with me and not in a strange place, albeit not that strange anymore given that he’s spent almost half of his short life there.

It’s the worst time of year for kids with complex medical needs and compromised immune systems.

Everybody gets poorly in one way or another because of the change in weather. But for our kids it can result in a month in hospital on airvo, CPAP or even mechanical ventilation.

It’s a frightening time of year. Jaxon was only a few weeks old this time last year so he was more vulnerable then, but that vulnerability is still very much there, it’s still very much real and it has to be at the forefront of my mind day in, day out.

So, what do we do? Let the world pass us by, not make any arrangements for fear of the difficult emotions that come from them being cancelled time after time?

Or do we make plans and try to handle the disappointment as best we can when they don’t come to fruition?

Just accept that this is how it is and one day, hopefully soon that we might be able to enjoy something without it being ruined by a hospital admission or another illness?

In all honesty, I’m not really sure. I guess we have to do what we’ve been doing until now. Take it one day at a time, prepare for the worst and hope for the best.


A question I have asked myself nearly every day over the last three years.

Why is my son disabled? What would he have been like if he wasn’t? What does the future hold for him? Why didn’t I stop it?

That last question has haunted me. For three years I have blamed myself for Alfie being disabled.

Thinking I should have known something was wrong and got help sooner.

Yet I did everything I could. I was in the hospital, I was on the doppler, everything was fine with readings for both boys.

The twin to twin lasted a minimal amount of time and yet I still felt to blame. Still felt like I had let Alfie and Rory down.

I was left to think that for three years. No one ever told me there could have been another reason.

The staff at the RVI were great and always so supportive, but it’s likely they didn’t know of the poor care Alfie had received at the other hospital because they never received Alfie’s full records, just a small amount of them.

They say hindsight is 20/20, and I completely understand what that means now.

At the time, you listen to the doctors and nurses because they are the experts.

When they tell you something is normal you believe them, when they tell you that “these things happen” you think they must be common in premature children; when they tell you oxygen saturations below 90 are good, you accept it because who are you to question the expert?

But things start to unravel when you go to another hospital.

A hospital where the care is second to none and is called the ‘Great North Children’s Hospital’ (GNCH). The clue is in the name as to the care your child receives.

Yes, Alfie was in SCBU which is in a separate wing to the GNCH, but the doctors and nurses were the same- the best in the country.

It soon became apparent when simple things like changing nappies was done so differently; cleaning procedures were meticulous and the care was not just for the child, it was for the whole family because the staff knew the mental effect this was having on us all.

When doctors ask you questions about your child and they tell you the information you have been given previously is incorrect, you start to panic.

You worry that you have been negligent. That you haven’t protected your children from the people you trusted to care for them. But how could I have known?

It has taken three years to get to the stage where we are finally getting some answers, and it will be many more before the answers are meaningful and give us some closure, but that is a fight I will continue.

Our little boy deserves it and I’ll make sure he gets justice.