What is Epilepsy?

The NHS state that ‘Epilepsy is a common condition that affects the brain and causes frequent seizures. Seizures are bursts of electrical activity in the brain that temporarily affect how it works.

They can cause a wide range of symptoms’.

Just like in Zachariah’s case, epilepsy can be linked to other conditions, for him it is his diagnosis of Lissencephaly (smooth brain) that causes epilepsy.

It affects him every second of every day. There are no breaks or moments of relief. There is no cure.

Epilepsy comes with fear and uncertainty. Its a thief. It doesn’t care. Epilepsy will strike big at any time.

Epilepsy causes pain, worry, confusion, and heartbreak.

What we’ve been told so far…

“Your son has life limiting epilepsy”.
“Your son has life threatening and drug resistant epilepsy”.
“Your son lives with constant epileptic activity and there is not much else we can do for him”.
“Your sons epilepsy is not severe enough to be considered for CBD Oil, but it could kill him”.

What we see…

Our darling boy staring into space, experiencing involuntary jerking, spluttering and vomiting, stiffening, unable to communicate, unable to prevent his eye flickering, shaking.
Our son losing skills he took so long to conquer.
Our child unable to get more than 4 hours of sleep per night due to seizures waking him up, and keeping him awake. Then unable to concentrate at school as hes exhausted.

What makes us proud…

Zachariah continues to smile, develop and enjoy his life.
Zachariah will not let epilepsy take a hold of his life, as he will push through and carry on.

How epilepsy affects daily life…

Zachariah takes meds twice daily to help ease his seizures. He has 3 monthly clinics to discuss and review his epilepsy, from these meetings he’s had various EEG’s, MRI’s, trialled different treatment such as the Keto diet and had his meds reviewed. Zachairah cannot leave the house with rescue meds now, as he can go into generalised seizure at any given minute of the day.

There is fear, but there is a plan, and there is hope.

My biggest battle with Zachariah’s epilepsy is the communication barrier. Being non verbal and having severe learning difficulties, he cannot tell me when seizures are coming, happening or when they’ve been.

I have watched him for 5 years and researched his epilepsy every day, to make sure I have the most information possible to advocate for him at the hospital.

It is a huge responsibility to say the least to care for someone with epilepsy, it often worries me that I may get it wrong, I may translate a false seizure or miss one.

This worry cannot get me down however, as I must stay focused and give my son the best care and advocacy.

You often hear parents/carers comment on the loneliness of caring for a child with epilepsy, and it can be true, but I have found that more and more of us are talking so openly about it, being real and raw to communicate how heartbreaking it is.

I have witnessed so many of my friends soldier through the unthinkable, and seen their children become true warriors as they too fight it daily.

We are not alone. We are a community who must support each other.

The picture is of Zachariah and his friends. All 3 of the boys have the same condition and battle epilepsy every day.

They are strong, and determined. They are warriors!

Living in the eye of the storm

It’s been three years since our lives changed forever. It’s been three years since we first sat in a hospital room filled with medical professionals. It’s been three years since we received that life limiting diagnosis for our youngest son. It’s been three years since the whirlwind began and we started living in the eye of the storm.

I often describe our daily life as being like a hurricane or a whirlwind; I mean our days are filled with hospital appointments, physiotherapy, feeding tubes, breathing treatments, medicines, phone calls, lifting, changing and that’s just for our youngest son.

Throw in a diagnosis of autism for our oldest son and there’s more appointments, more phone calls, meltdowns, visual time tables, social stories, cool down time, set routines. This whirlwind whirls round and round constantly. It’s never ending and there’s never any real let up.

I live in this whirlwind daily and always in fear that at any moment the storm will spiral out of control.

In the early days, as the whirlwind was just getting started, I remember one of our medical team saying “this will all settle soon”. The truth is nothing has settled, in fact the whirlwind has gathered more speed, picked up more force. What has changed though is my ability to live with the storm.

I’ve learned to stay right in the middle – in the eye of the storm.

The eye of the storm is where the calmest weather is, the lowest pressure occurs here and clear skies can be seen. It’s a safe place and it’s the place where life can be enjoyed.

For me this means taking one day at a time, cancelling non-essential appointments if there’s too many in the one week, only taking phone calls at certain times, focussing on my boys and family life. I try not to look too far ahead and try to just live for the moment. The whirlwind can go on round about us, I know it’s there and I know if I come out of the eye, the calm place, it will do damage.

Life is far happier if we stay in the eye of the storm, where we can be in control, where we can laugh, where we can see the storm but don’t let it affect our ability to live our lives.

Get off of Social Media

In this social media obsessed day, it’s easy to get caught up on someone’s Instagram feed or Pinterest page and question everything about your parenting technique (and, do I even have a technique?) because someone else is making beautiful crafts and baking and taking their kids to all the best museums.

Am I failing my kids by not making their lunches into picture-worthy Bento box treats?

Frankly, I’m more concerned that they eat fruit most days, and my aspirating son doesn’t have anything too dry to eat.

Am I failing my kids because they aren’t seeing where every single culture around the world is at right now? I’m more concerned that they learn to love and help the kids in their own neighborhood and city.

Am I a failure of a mom because I didn’t shower in a couple days, and my perfect seasonal outfit is sweatpants and an oversize sweater?

Do I sound a little bitter? Maybe I am.

Maybe I am a tiny bit jealous of the Instagram moms who can accomplish all these things.

Maybe I am jealous of the excess time I had before my son was born with cerebral palsy. Maybe I wish I could do everything, be everything to all my kids.

The reality is that there is only so much time in a day. I try to spend a little quality time with each of my children daily, but sometimes I fall flat.

My son gets extra attention by default; he needs me to listen longer because he is trying so hard to be verbal. It often takes me six times hearing it before I process what he’s saying.

He also needs extra time to go up the stairs, to be put in and out of a structural vest, his AFOs, his wheelchair.

Sometimes it’s all I can do to promise them that “maybe tomorrow” we will sit down together to do that puzzle, to color in a book, to paint our nails.

Or I try to do one of those things while putting someone to bed, or reading a story, or feeding my son. I’m honestly not the best at multitasking though. Someone always feels slighted.

I’m sure my kids wish they could go to all the museums, too, and do all the crafts, and bake all the beautiful Pinterest-pinned desserts. So, I’m sad I can’t give them those things.

So what’s a modern mom to do? The first thing is, get off social media.

Stop comparing my life to someone else’s. Sounds easy, but it isn’t (especially in America).

It’s in our nature to compare to one another, even though it benefits only the upper echelon of socialites who have unlimited time and money.

We simply have to reject this idea that we need to be like someone else.

We need to embrace our differences and proudly jump into the social waters, ten minutes late, with all our extra equipment, and post about that.

Carrying the load

I was recently chatting with a friend about the beginning. The beginning of our journey.

The unknown, the search for answers, then the diagnosis. The crazy list of appointments that felt like they would never ever end. The tears in the shower. The fears. And the support.

The overwhelming support of family members, old friends, new friends, and even strangers.

For us, the support was so powerful and far more than we could have imagined. We had people checking in on us, bringing us dinner, and showing up in countless ways.

And then life happened.

Life gets busy and crazy. Years go by.

Life goes on, but our struggles haven’t ended. Our need for support doesn’t end. The appointments, the fears of the unknown, the worries, the tears in the shower…those don’t end.

What does happen though is that we (as parents) get so good at carrying the load.

We get stronger and somehow carry more than we ever imagined.

We get so good at showcasing the great days, highlighting the “wins,” and sharing all of the triumphs.

We get good at saying things like he’s stable. He’s healthy right now. He’s so happy.

And we don’t say things like I haven’t slept a full night in 6 years. I’m terrified of losing him.

We are struggling with anxiety and behavior. I’m struggling. Bathtime is getting difficult..carrying him is getting harder and harder….and so much more.

Because it’s been over 6 years.

And we should have a handle on things, right?

But let me tell you that we don’t always have a handle on things.

Some days it feels like I am thrust back right to the beginning.

We are still parenting that severely developmentally delayed, medically fragile child from the beginning.

We are still trying to navigate the world of unknowns and fears.

There are moments that the load is too heavy to carry alone.

There are days when the idea of forever is an enormous thought to think.

There are days I feel forgotten and alone.

The only thing that has changed for us is his age and our ability to carry the load.

You may be in the same situation.

And whether you are one year into the journey or 10, I want you to know that you aren’t forgotten.

I see you. I know that the struggles haven’t ended.

I know that your fears are still nagging you in the back of your mind.

And I know that even though you have gotten so good at carrying the load it’s still incredibly heavy.

I also know that sharing the load and acknowledging the struggles you face takes nothing away from the immeasurable love you have for your child.

It’s hard. Some days are harder than others.

And although you may feel forgotten along the journey, know that you aren’t, know that there are other moms like me carrying the load.

And on your hardest days, I’ll gladly add to my load if you promise to do the same for me.

Incontinence and the nappy mountain of Staffordshire

Between attempting to persuade Mr V to remember to use washable wipes for nappy changes (eco warrior me), encouraging (read nagging) him to at least give the washable nappies a try once or twice a week, and then negotiating the enormous mountain of boxes currently stacked in our hallway containing the next 3 months’ worth of continence products, I fear I may go loopy.

As a parent you expect the nappy-wearing, charming part of babyhood to be relatively short.

Even when as a toddler bladder/bowel control is a thing of myth and mystery, you still believe that one day your child will learn to use a toilet.

The Dude is now 8 years old and has the same level of continence as a baby.

He can let us know (usually with a gleeful grin and a darn good wiggle) that he has done something unspeakable, but he has no control over his body functions what so ever.

Changing an 8 month old baby is one thing; changing an 8 year old child who cannot sit/stand/ walk is quite another.

Like everything else this life has introduced us to, we have adapted.

We can’t just pop to the shops to get him a new pack if we run low; its expensive too – we receive a very welcome contribution from the NHS towards his nappies, however this doesn’t cover his needs fully.

We’re also trying to be more eco-friendly, see above re: washable wipes (best things ever) and washable nappies (currently, a bit of an issue).

15 nappies for my boy costs £15, compared to £1.99 for 20 nappies in Aldi. The new Junior nappies from Tesco go some way to addressing the cost and availability issues, but at 8 years old he has already grown out of these.

Then there is choosing which room to lose for the next few weeks as the boxes need to be stored *somewhere*.

We never expected that we would still have to change our son at this age; or how militant I would become about toilet accessibility!

Until he has grown to a size where I can easily find washable nappies to fit him, we’re stuck with disposable ones; boxes of which currently form the Nappy Mountain of Staffordshire in our hallway.

All I now need to do is find a home for this little lot, and pray that Abbotts don’t deliver his feeding supplies before I do…

What a parent does

Dear One,

So many days I cringe at the words I know you hear spoken to me in an attempt to pat me on the back or applaud the life we live.

“You foster and adopt kids with special needs? What a hero you are!”

“Do you ever sleep?”

“You are superwoman for caring for these children!”

I cannot imagine how it feels to constantly have the privilege of loving and caring for you compared to the work of a superhero.

I know you hear these comments, but I pray you hear my replies even louder:

“I am not a superhero at all. Just a mom.”

“I would choose this life over and over again.”

“I’m not really sure what you mean. I am honored to be a mom.”

“I am not special. I am simply doing what a parent does.”

My precious child, do you know why I do what I do?

I do it because I love you.

I do not do the work of a wizard or a hero or a saint.

I simply do what a parent does.

I do not advocate for greater inclusion for you, my child, because I believe your teacher needs more on her plate or because I get some kind of thrill by stirring the pot.

I advocate because you deserve to be seen, respected, and included.

I advocate because that it what a parent does.

I do not wake before, during, and after the midnight hour to give medications, reposition, and comfort you because I am immune to exhaustion. I don’t push through weary days with a smile on my face and joy in my heart because I thrive off of sleep deprivation.

I find joy in the tired days because being with you is delightful no matter how l feel.

I sleep a little less because you need me to.

I place your needs above my own because that is what a parent does.

I do not take the time to meet the stares of others with the sharing of your name and strengths because I have no urge to punch ignorance in the face sometimes. I don’t choose to speak up against discrimination, inaccessibility, and unkindness because I enjoy confrontation and heated conversations.

I speak on your behalf because I know you, adore you, and respect you, and others should too.

I voice my opinions because they teach others to see you for who are.

I educate because that is what a parent does.

Sweet child, I don’t hold up an entire doctor’s office while you use eye gaze communication to choose between twelve colors of casts because I think making others wait is a fun hobby. I don’t make extra space in my day to allow for you to have all the time you need to use your unique voice because I don’t ever feel rushed or short on time.

I choose to give your voice a platform because your thoughts matter, even though they take more time to be heard.

I choose to let you choose and speak, even when it would be easier to do so for you, because you are a human with a voice worth hearing.

I hear you and make others listen in because that is what a parent does.

I don’t hoist you and your equipment into the van multiple times a week, bustling to appointments and therapies because I have superwoman muscles or favor the interior of doctor’s offices.

I push you to grow stronger, healthier, and greater because you have great potential that deserves to be acknowledged and encouraged.

I seek the best doctors and therapies for you because I want you to feel and be your best.

I seek the best for you because that is what a parent does.

Do I make sacrifices for you? Yes. Do I get tired sometimes? Yes. Do I wish it were easier some days? Yes.

Do I ever doubt that you are worth it? No. Do I ever regret it? Not for an instant.

My sacrifice has nothing to do with the diagnoses you have been given or the challenges you face. Instead, it has everything to do with your worth …your humanity …and the incredible privilege it is to be your parent. It has everything to do with who you are and how greatly I love you.

Oh how I love you.

I love you because that is what a parent does.

Your Parent

What I learned from my sister with Special Needs…

My sister- sweet, pure, innocent, altruistic, kind, patient, funny, compassionate, empathetic and friendly was also mildly developmentally, non ambulatory and totally dependent for all activities of daily living.

As a young child, I remember teaching her addition using pretzels and licorice sticks at our kitchen table.

Then as a teen, she always went out with me and my friends.

If I went for ice cream, to the park, movies or bowling, she always came along. I endured walking at half the speed, taking frequent trips to the bathroom with her, and of course, all the stares…..and I wouldn’t have had it any other way!!

I automatically assumed the role of the caretaker.

As a youngster myself, I had to mature quicker than the average teen.

I looked at the world through a different lens. Where others saw despair, I felt inspired. While others were impatient, I learned perseverance.

Where others didn’t see a typical person, I only saw potential for growth.

I understand that bringing up a child with special needs can be challenging, and often frustrating.

But, as the sibling of an adult with special needs, and as her caretaker for the past 20 years, I also learned how to be a passionate advocate for those whom I love, I became inspired to become that person who can change the trajectory of a child’s life, and I realized that I’m a better person today because of the way that my sister was born.

I work each day to help others get past the cacophony of daily challenges and to make lemonade out of lemons.

She was perfectly imperfect!

Apathy, Aggression, Injustice – Welcome to the world of Special Needs Parenting

I am not a confrontational person. If anything I am learning to pick my battles.

I’ve been told in a therapy session “Ceri-Ann, you simply don’t have the energy for that” and am constantly told to be careful what I let get to me and drain me of my energy.

You need a lot of energy as a parent. You need even more as a special needs parent.

Today I am aching to my core. Amy has a cold. It’s never “just” a cold though is it with some little ones.

It’s suction, nebulisers, temps, laboured breathing, constant clothes and bedding changes and sometimes even ambulances and hospitals. Just day to day energy to do all of her transfers, dressing, washing, medications and whatever physio and interventions she needs is enough to exhaust me.

Getting her in and out of the car several times a day is becoming a bit of a back breaker. But when she’s ill I feel it most.

So as you can probably see, I do what a can to conserve energy. (Also I drink a lot of coffee)

However. I cannot stand by and watch an injustice and not say something.

I was recently taking Amy to respite only to find a work van was parked in the drop off bay. It’s a drop off bay for families with children with severe/complex medical needs. There’s only the one and getting through the door can be a challenge if the car park is full.

I sighed and thought “well, he shouldn’t be parked there”. I blocked him in.

I’d only be a few minutes. We have a blue badge. I don’t know why I even had to justify it to myself.

When we came back out the man was stood glaring through the door at us.

“Ignore him”, I thought. He has no idea what we go through day to day.

I even warned Phil (Amy’s dad) to not shout at the man for parking in the bay. He didn’t. I didn’t want the embarassment. I was just going to quietly get in the car and drive off.

The man came raging over to us “YOU SHOULD NOT HAVE BLOCKED ME IN” he shouted.

I couldn’t quite believe the audacity of it. Whether he had been given permission or not to park there didn’t matter, why was he now towering over us and shouting!?!

I tried to explain that it had been difficult for us to enter the building because of his van.

I also tried to explain Amy’s level of mobility and medical needs. But he wouldn’t listen. He was obviously a very hot headed and angry individual. We tried to argue back. I was furious.

Who on earth did he think he was?! Why couldn’t he just shut up and be grateful we weren’t going to say anything in the first place? By this point he was properly shouting at us and getting more and more aggressive. He squared up to us. I started to feel a bit scared.

At this point I realised that this man was a waste of our energy. He was never going to say “you know what you’re right, I’m sorry.” Never in a million years.

So I got in the van. Took a photo of him (he clearly saw and was even angrier) and moved so he could get his van out. I sat and emailed a big complaint to his company. I was shaking and holding back the tears.

Later that day I received a gushing apology from his manager and an assurance that the man in question had been dealt with.

I didn’t wish to pursue it further, in fact I’d quite like to forget the whole thing ever happened. I don’t want to need apologise, I just want everyone to be a decent human being and be kind.

But this isn’t an isolated incident.

All day everywhere people abuse the system. Or through blissful ignorance, families like ours are left to struggle… often totally unnecessarily.

Finding the balance between “I can’t change the world by myself” and becoming passive and apathetic, and then the next moment thinking “NO. I will NOT stand for this. If I say nothing, nothing will ever change.”

Even just switching between these two modes all day is frustrating.

I went to the supermarket with Amy the other day. Sadly our Firefly trolley use days are over as Amy is a real kicker and I can’t push her without getting very bruised legs!

So we opt for the disabled trollies that attach to the wheelchair. She loves it as she gets to be in charge of the trolley and even gets to throw things out of the trolley… it’s all a fun game for her.

Previously I have sent many complaints to the store for not having the trollies in an accessible place; I’m happy to say that since this they have been good at keeping them in the same area.

However on this occasion there wasn’t even one trolley.

Feeling instantly annoyed I walked to the customer service desk. I hid my anger and politely smiled and said “Hello, can I have a wheelchair trolley please?” To which the response was “oh sorry, we only have one now, the rest have been stolen again.”

STOLEN. Unexpectedly I started to cry. The person offered to go and look for the other trolley but thought it was in use.

Had I stayed I know they would have offered to help me shop. But I don’t want help shopping. I also don’t want to order online.

We want to access the community, grab a trolley, and do our shopping just like everyone else gets to. I don’t want us to get special treatment, we just want to do whatever everyone else gets to do, and sometimes that needs a little extra consideration (i.e A different trolley. a changing place. A ramp.)

“I’ll go to another shop” I managed to choke out as I turned away and walked back to load Amy’s chair into the van.

Suppressing the tears I couldn’t help but see several parents and children walking in to the shop, running, skipping jumping; it seemed like some strange dream where the world was mocking us with how easy it can be for others.

I was tempted to drive home empty handed but we needed stuff. Amy’s dad was home poorly and we needed supplies.

Aside from all of this – who even steals a wheelchair trolley?! I just know on my next riverside dog walk I will see one of the trollies submerged in a riverbank and it will re-awaken my anger.

The next shop was fantastic. There were quite literally about 40 wheelchair trolleys, all different sizes, AND the amazing Firefly trolley.

The shop was hard. Amy’s posture has changed a lot. Her head constantly bobs forward and causes whiplash with how fast and hard it happens.

Her secretions were bad. Her seizures frequent. One moment she was laughing, the next she was screaming. I did the whole shop whilst singing to her and using one hand to help keep her from hurting her head.

It was exhausting. A lot of people stared. “Welcome to our reality” I wanted to say. I was feeling especially hard done to by this point and wanted to start charging people money to stare. I said nothing. I smiled politely.

Inside I felt like a ticking time bomb. “Conserve your energy.” I kept telling myself.

When we finally left the shop I walked past all of the disabled bays to our van. It was raining hard by now. Amy loved it. She likes rain now.

I tried to focus on her smile and laughter and not on the three cars that clearly didn’t have a blue badge parked in the disabled bays.

Part of the “I’m only going to be 5 minutes gang”. I thought to myself “Take her spot, take her disability”, and in my mind I left a snarky witty note on their windscreen, or a false parking ticket.

What a sadist. These people have no idea.

I have so many of these stories. I could probably tell at least five new ones a week.

I went in a huge new shop near us recently. Their disabled toilets were massive. (the room not the actual toilet!). I couldn’t help but feel betrayed that they hadn’t installed a hoist and level access changing table.

What a waste of space! I thought well maybe they just don’t know about it. So I took to social media and explained our situation. What was my response? It was a polite, well worded no.

It was written so kindly but basically translated as “That’s not going to happen. Dream on. “What do I do? I can’t really boycott the shop.

They’re not going to close down just because I’m not going back. Also they had built the toilets to regulations in the disability act.

So it would be a losing battle. I have to let that one go it would seem.

A local cafe advertised some amazing cakes. “Do you have wheelchair access?” I commented. The response? Another polite no. So I won’t go there, even if Amy isn’t with me. They probably aren’t losing out.

They’re serving many cakes to all of their most mobile customers. I walked past there and feel a bit of sadness in my heart that this is just another place we won’t get to go.

Another fight I won’t win.

I internalise a lot of rage. I try to let it out in healthy ways.

I try not to adopt unhealthy coping mechanisms. I try to focus on the positive.

But sometimes it all just seems so bleak, so dark, so unfair.

Maybe I won’t change the whole world. But maybe, somewhere, someone, will read my blogs and change their ways and see the world through our eyes, even if just for a moment.