I know you didn’t glance back today after I kissed you goodbye. Why would you? You were full to the brim with excitement for your residential trip with the school. Chatting to your mates about Pokémon cards and which activities you were going to do. I heard you say ‘I’m going to do everything!’
I also heard you tell everybody that you had only had an hour’s sleep last night. Yes, that’s true, every hour waking me up to tell me the time and how many hours there were left until you head off on your adventure. I tried to calm you down but nothing worked. By 4.30am, I gave up and suggested you watched TV. Self preservation for sleep was beginning to kick in!
This morning you literally bounced around the house, causing great excitement in your brother too. I was silently wishing the time away, I was tired and a little sad that you were heading off on your own.
However, your enthusiasm for life makes me smile. I know you will put everything you have into enjoying your time outside climbing, swimming etc and return home absolutely exhausted at the end of the week.
I’m pleased that you go without a care in the world. I’m pleased I have done all the worrying for you. I’ve met with the teacher about your special needs – we discussed your medication and your specific requirements. I’ve googled how far away the hospital is just in case you have a seizure. I’ve worried about the fact you’ll be kayaking in the sea and I’ve worried that you won’t eat at lunchtime because of your ADHD medication. (The lovely teacher is taking some breakfast biscuits for you to munch on should you get peckish)
Off you go precious boy, have a blast! I’ll never stop worrying about you although I am looking forward to some sleep tonight. Oh and thanks for the letting me give you a kiss goodbye, even though ‘that’s embarrassing!’
I’ll miss you…
Love Mum xxxx
At the point of diagnosis Bam was having about 10 seizures a day. He would suddenly lose consciousness and fall to the floor. We would then have that agonising few second wait (which felt like much longer) for Bam to come back to us. It’s really scary seeing your child unconscious, not knowing how long the seizure will last for. I felt helpless. When the seizure finished all I wanted to do was hold him tight but that’s the last thing he wanted. He was confused, tired and disorientated, he needed time to recover.
We realised shortly after diagnosis that Bam was also having absence seizures as well as drop down seizures. My poor boy was having several seizures per day leaving him confused and exhausted.
I desperately wanted to know more about epilepsy and how I could help Bam. There’s so much information out there but I found it very overwhelming and confusing. For a start there are over 40 different types of seizure!
When Young Epilepsy asked me to blog about their new guide on childhood epilepsy I was keen to help. I’m pleased to say it’s pretty impressive! I wish this was available when Bam was diagnosed. It has everything you need to know from details about the different types of seizure through to the medications that are available.
Personally I found the section on the impact that epilepsy can have on learning and behaviour of particular interest. Bam has Attention Deficit Hyperactivity Disorder (ADHD) in addition to epilepsy. I had no idea that 20-40% of children with epilepsy also have ADHD! The guide also explains how children with epilepsy can be anxious, find they have a lack of independence, a low self esteem and a lack of confidence. So it’s not just about the seizures….
The Young Epilepsy guide talks through each of the issues that children with epilepsy can experience and how parents can help their children manage these challenges. I highly recommend this guide to other parents of children with epilepsy, it’s informative and easy to read.
Finding out your child has epilepsy is tough. Having information such as the guide that Young Epilepsy has published is really helpful. It’ll help guide you through what sometimes can be a tough journey.
I’ve been reflecting recently on the family life that Mops, my youngest boy, is part of. Life is very chaotic, loud and active. For him life has always been like that so I wonder if he actually realises his life might be ever so slightly different to his friends in the classroom?
He knows all about Bam’s conditions and how they affect him. He’s very open about them and will chat to his friends about it. He’s adapts brilliantly to life with Bam. He’s so patient, much more patient than anybody else living in our household! Even if he has to ask the same question to Bam five times over, he’ll do it and persevere. I wonder if that’s because he knows he needs to be patient or because that’s his normal.
I often wonder that as Mops gets older, he’ll begin to realise how he adapts to living with a brother with ADHD and epilepsy. Does he enjoy charging around all of the time with his brother, climbing trees, scooting, generally living life in the fast lane or is he wondering about the next time he’ll get to sit and relax? I suspect it’s probably a little bit of both!
This weekend I took Mops out for some lunch, just him and I. So as we sat in Subway munching on our sandwich creations we chatted about school, play, friends etc. It was as we were walking through town I asked Mops if he had enjoyed his lunch. His reply was very simple but very powerful ‘Yes Mum, I have, it’s been very relaxing!’ So he does like a bit of down time, just to sit, just to chill, just to be able to eat a sandwich rather than gulp it down.
He’s still very young (5) but I wonder how he’ll handle family life in the future. I have a feeling he’ll adapt, just as he always has. Love you Mops for everything you do and I know Bam does too.
Recently Bam made a big decision…he decided to tell his class about his epilepsy. Previously he was adamant that he didn’t want his friends to know, he didn’t want people to think he was different. (see earlier blog post)
So why the change of heart? I think it was down to our attendance at the Young Epilepsy Awards in London earlier in the year. It was here that he realised that he wasn’t the only one with epilepsy, everyone at the awards had epilepsy just like him and they were celebrating their achievements.
He was so inspired he decided to organise an assembly at school to tell everybody about epilepsy and how it affects people.
So off he went to school, armed with statistics and information on the different seizures. He spoke to his Teaching Assistant who in turn spoke to the Head Teacher. They welcomed the idea and booked him in for his assembly!
He was so excited! He spent lots of time thinking and planning the powerpoint presentation that he was going to build ready for his talk.
When the day came for him to run his assembly, he went into school cool and calm. I could see that he was very self assured, I knew this was the right thing for him to do.
He proudly spoke to the class and then answered any questions at the end. When one child asked ‘Does epilepsy stop you from doing things?’ His reply was ‘No, I’m no different to anybody else!’
Wow, Bam, I’m oozing with pride – you never cease to amaze me young man! Well done for sharing your experiences and raising awareness of epilepsy among young people.
And life since the assembly? His classmates treat him exactly the same as they did before, nothing’s changed but if he (or another child) does have a seizure at school then they will understand how to help. (Which makes me feel much happier!)
When Bam asked if he could go on the school residential the response in my head was ‘no way are you ever leaving Mum, ever’ What I actually said was ‘well, let’s look into it’ So that’s what we did. We spoke to the school about whether they would be happy to manage Bam’s epilepsy and ADHD while he was away, they were, so we booked him in.
This was several months ago, lots of time for me to get used to the idea…but I never really got used to the idea. Three days of somebody else caring for him, making sure he is safe and happy and making sure that he has taken his medication. Eeek! Before I knew it I was squashing clothes in his case ready to go away!
On the morning of departure, I found myself standing in the school hall, suitcase left outside for loading on to the coach and my boy excitedly chatting to all of his mates in the hall with not so much as a glance in my direction. Me full of worry and apprehension but trying to keep it well hidden!
When the time came to say goodbye, he ran over and gave me a hug and just said ‘bye’. ‘Bye’ yes that was it! I was then thrown into the dilemma of whether to wait to see him off on the coach. Other Mums were gathering outside to wave them off. After my simple ‘bye’ I didn’t think he would be too bothered whether I stayed or not but I just had to! I needed that one last opportunity to say ‘bye’. He came out to get on the coach and gave me a passing glance. Ooops, maybe I shouldn’t have stayed. Oh well. I’m here now.
I’m scanning the coach for his face, nope, nowhere to be seen – he must be the other side of the coach. I hastily make my way to the pedestrian crossing, the coach engine starts…ah, come on green man, give Mum a break. I quickly cross the road and find him on the other side. So I start waving. He waves enthusiastically back. He’s mouthing ‘I love you’ through the window and blowing kisses. Ok, sunglasses are firmly on as tears are on their way! Glad I stayed, glad I captured those kisses blown from my boy! Have fun darling boy, I’m so proud that you are confident and happy to go away on your own but I’ll miss you more than you’ll ever know. Friday please come quickly!
Oh and just for the record Mops said ‘I think it’s ok to have a brother sometimes’ That’s his way of saying he misses you too xxx
We think Bam’s seizures are back. I’m saying we think because it’s not the drop down seizures, it’s the focal seizures, the ones where he zones out for 30 seconds several times a day…
So we have been back to see the consultant…she has referred us for another EEG. This time though it’s an ambulatory EEG so he’ll have to have wires on his head and a machine with him for 24 hours. It’s great that it’ll be able to monitor his seizure activity on a normal average day but I know he won’t think like that. He’ll think ‘why do I have to have a machine attached to me?’ ‘I can’t have a shower’ ‘I can’t sleep’…..’why do I have epilepsy’
Every day people living with epilepsy will go through these tests, EEG’s/MRI’s/CT scans, everyday people with epilepsy will have seizures and everyday people, like my son will be a beacon of inspiration.
Bam makes me proud, he’ll deal with the EEG next week in the most amazing inspiring way, just has he has dealt with them in the past and will again in the future. For somebody so young, he is an inspiring young chap. He has an abundance of energy and puts 100% into everything that he does.
In his world his epilepsy has always been a part of him. He was four and a half when he was diagnosed so he doesn’t really remember a time without epilepsy. He’s always been very keen to learn more about his seizures and is passionate about helping other people with epilepsy. He was my number one supporter at the run I took part in for Young Epilepsy) and has future aspirations of becoming a doctor so he can help people with epilepsy. Good plan Bam!
There are lots of inspiring young ladies and men out there living with epilepsy every day. That’s why I was so pleased to hear about the Young Epilepsy awards. If you would like to nominate somebody there’s still time!
More information can be found on the Young Epilepsy website
It’s on its way…. we’re all starting to turn our focus to Christmas. It’s such a magical time but also a time we find ourselves taking a moment to reflect on the past year.
I would like to thank Young Epilepsy for their support. They have supported lots of young people with epilepsy this year in many different ways. Check out what they have been up to on their lovely snowy, Christmassy page…
Here’s my fellas looking for a certain man dressed in red…I wonder what they’re wishing for….