Going away..

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

Advertisements

My inspiration

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

 

A time for reflection

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…

http://www.youngepilepsy.org.uk/christmas

Here’s my fellas looking for a certain man dressed in red…I wonder what they’re wishing for….

 

Letting go!

DSC00441So my big boy is getting older, he’s 8 and he’s rapidly becoming more and more independent. I know all parents grapple with making decisions about the right time to let their child walk out of school on their own or let them stay overnight with somebody other than family.

So this weekend is cub camp, he’s been before but only for one night and this time it’s two nights…! I’ll be honest, if was up to me I wouldn’t let him go, I want him at home with me where I know he is safe. Bam has epilepsy, it’s controlled with medication but it just makes me worry about him that bit more. Epilepsy is a serious condition and you never really know when the medication isn’t going to work any more therefore making him susceptible to seizures.

Of course I have told the cub leaders that he must be watched if he’s climbing up high or near water. They know he needs to take his medication twice a day but I know no one could love him as much as I do, will they look after him in the same way that I would?

I know this is just the start of Bam entering independence, I need to help him learn about epilepsy so he can take care of himself, so he can make other people aware of his condition and let them know when he’s not feeling too well. It’s tough, I don’t want him to be held back by his condition, I want him to be free to do everything that he wants to do but I also want him to be careful.

People say children get easier as they grow up, I really don’t think that’s the case, I think the challenges just change…..! Have fun this weekend Bam, stay safe, can’t wait for my cuddle with my muddy, smelly, happy boy on Sunday afternoon xxx