Category Archives: The Teenager

Well, We Did It?

The Teenager turned nineteen yesterday.

My incredible son, who has had to cope with MS from the age of eleven.

Could there be worse timing?

MS was instantaneous for us – no warning, no real preview of the devastation to come. He went away for the weekend and when he came back (picked up by a friend as I was in hospital) everything had changed.

Suddenly he was thrust into a world where his main parent was ill.

I was the mum who had taken him to, and picked him up from nursery, primary school, breakfast club and after-school club. I was there at the sidelines for rugby and sewed badges onto swimming trunks and Beaver’s outfits. I checked over his reading books, helped him build castles from cardboard and sorted outfits for school plays.

I was ever-present and then suddenly I wasn’t. We both had to learn to live by very different rules and it wasn’t pretty. I was in and out of hospital, the Doctor’s, various clinics, alongside coping with an employment tribunal. And there he was, starting High School.

I fitted three courses of Alemtuzumab around his school holidays, specifically booked in for that reason. After my second course, I had 24 hours to get back on my feet and be there for him coming home, not easy with zero immune system.

But we muddled along, and my sofa became the ‘command centre’. I had my blanket tucked behind it and could whip it out at a moment’s notice. I jotted down important points, dates, friend’s names, anything I could to keep up to date with everything that was going on.

For both of us the most difficult symptom was the fatigue. I always tried my hardest to stay awake until his bedtime and a little bit extra, to appear, ‘normal’. Now he is back home for the summer Uni break and goes out for the evening, he says, ‘you can go to bed at whatever time, I’m out.’ And a little bit of me dies inside. I know that he knows that I know.

MS has been a terrible learning curve for both of us, but we got through it. I had friends I could confide in, ask for help from. The imperative was to give The Teenager as normal an upbringing as possible. It didn’t always work out that way and I will always regret that.

Yet now, here he is, a super-confidant young man.

In my blogs I normally whinge about The Teenager (as you do), but today I’m going to say how proud I am of him. He made it easy. His inner strength saw him through the worst.

I’m impressed at his resolute attitude and his sheer enthusiasm for life. In short, I love him to pieces.

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Teendults – A Survival Guide

The Teenager is home for over three months now Uni has finished for the Summer break.

He sent me an extensive shopping list in advance – ‘lots of protein, fruit, veg, rice, protein bars, frozen fruit, milk, eggs, bit more protein’.

Just to be on the safe side, I added extra loo roll (he’s the Houdini of Andrex), more toothbrushes (he chews them), gallons of shower gel (he swims in the stuff) and some more protein.

If I’d thought about it, I should have sent a list back, something like this:

  • Take your key when you go out.
  • Change the loo roll when it’s empty (handy hint, there’s more next to the loo).
  • Take your key when you go out.
  • Turn the oven off after cooking your usual six salmon steaks.
  • Take your key when you go out.

And that’s pretty much it. The key issue is a biggie; he’s lost more keys than I can count, forgets to take it or just seems surprised to find it in his pocket after hammering on the door at 1am.

On one memorable occasion, I woke up to find his bed empty and my front garden littered with plastic bottles and newspapers. He’d forgotten his key and in his endearing wisdom, decided to chuck the contents of our recycling bag at my bedroom window in the hope of waking me up.

I eventually tracked him down to a friend’s sofa and had a little chat about the aerodynamics and weight of newspapers.

And so it was I took my friend for the journey and we picked up The Teenager plus all his worldly possessions and trekked back home. The cat rolled her eyes and scarpered, used to a more sedate pace of life in his absence.

It’s strange welcoming back an adult, after dropping off a boy at Uni last Autumn. We’re both adults now, yet somehow there’s the maternal temptation to revert to type.

I remind him to take his coat when it’s chilly. He reminds me he’s an adult. I press an apple into his hand before he goes out. He places it back in the fruit bowl. He’s not the only one rolling his eyes. And so it goes back and forth.

I think though, that we’re getting there. I’m getting used to him singing in the shower again; some days Beatles hits, others Oasis. The thumping as he gets dressed (no idea). The evidence of overnight fridge-foraging when I come downstairs in the morning (follow the crumbs to the empty packets).

Some things never change though. One evening last week, I resisted the temptation to ask if he had everything before he went out – key, wallet, fully-charged phone (hah!). I waved him off, feeling quite pleased with myself, and settled down to some serious Danish drama on telly.

A minute later, a knock on the door. The Teenager, looking sheepish.

‘Forgot my key’.

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Always On Call …

The Teenager has always been fiercely independent – give him a phone charger and he’ll travel anywhere, talk to anyone and generally find his own way back home.

He’s settled into University life as if born to it and has found his feet exceptionally quickly.

So I’m always a little thrown by random texts I get from him, at the oddest times.

Take Friday for example. I’d mentioned to him I’d be at an MS Council meeting 60 miles away and staying overnight. There’s a get-together in the hotel in the evening to meet other people affected by MS in the surrounding area and it’s great to see new faces.

I’d settled down on a squishy sofa and was having a brilliant discussion with two lovely people, and , well, whaddaya know – up pops a text at 7.30 – ‘Should I get bleach to clean my toilet?

Umm. Ok. I replied, he indeed should and use it a couple of times a week. I then rejoined the conversation and picked up the thread.

Another text pinged – ‘How do you do it?’

I texted back about squirting it under the rim and making sure he had a loo brush. He did, so that’s good. I should know, I bought it for him along with a million other items on his IKEA Student Survival Shopping List, an event I’m still recovering from.

And that was that. Until the next time.

What the toilet bleach conversation showed me is that you just never, ever, ever stop being an always-available parent. Which is kind of lovely. It’s nice to help fill in the gaps he’s finding as he learns what it is to be an adult, bleach and all.

I like the fact he knows he’ll get a quick answer from me, even if it’s an ‘I don’t know’, as in one of his other texts recently, ‘Have you heard of the band Royal Blood?’ Nope. Or when he just wants to say something, such as, ‘I made chicken katsu curry. From scratch.’ Proud.

When it comes to priorities in my life, he will always come first, no matter what MS throws at me. He knows that even if I’m sprawled on the sofa, virtually unable to move for fatigue, I will make sure my phone is by my side.

Looking back, I can’t say he had it easy with MS. It hit just as he entered high school and we went through some pretty dark times, but we did it. First and foremost, MS was my battle, and I wanted to protect him from the worst of it, as is right. His childhood and growing up feeling secure and loved were top of the list.

So, I love his random texts, his song suggestions, his little remarks about how his latest essay is going. I’m involved in his life, but not overly so and that’s the way it should be.

P.S. Has anyone heard of Royal Blood?

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Look Back In Anger?

tattooThe Teenager had a tattoo on his 18th birthday, and he invited me along.

It felt weird to hold his hand (his grip is pretty strong), and get him through it, just as the midwife had held my hand almost exactly 18 years previously.

He’d thought long and hard and we’d held discussions for well over a year beforehand. Did he know it was a lifelong commitment? The pain? But he was adamant, and I eventually backed him completely.

He wanted his friend’s name and date of birth. And death; he died aged 17 of cancer and The Teenager wanted to symbolically take him along on all his adventures that his friend hadn’t lived to see.

Fast-forward five months and The Teenager (plus a huge bag of laundry) landed back home again for a second tattoo, on the other arm. Same discussions, same concerned parent. But he’d booked an appointment, paid a deposit and came home wrapped in cling film.

The result was a tribute to the grandfather he never knew and my dad, who died aged 35 from complications arising from his MS. I’m still pretty stunned.

I remember being so angry, back when I was first diagnosed, that I would never have the chance to talk to him, to share our experiences. I felt wholly, absolutely, alone. I was four when he died, so I don’t remember much about him, just snapshots, which may or not be constructed through other people’s observations.

Above all, I feel incredibly sad that in less than a generation, things could have been so different for him. I also feel moved beyond words that The Teenager has created a permanent memorial. He had the words ‘Live Forever’ tattooed underneath, a fitting tribute to a man who was apparently so full of life, and a nod to The Teenager’s favourite band.

Before I veer into maudlin territory, I am full of admiration for The Teenager’s determination to rise above the experience of having a mum with MS. He’s been through hell, all through his secondary school education, yet he has come out fighting and is passionate about justice and caring for others.

In short, I am proud.

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Wise Beyond His Years …

owlThe Teenager is back for the holidays and my heart is bursting with pride.

It seems I sent a child off to University in September and he’s come back a man.

Sure, he’s stripped the fridge, freezer and every cupboard bare in a never-ending quest for food. He brought back three loads of dirty laundry, and he’s spending an inordinate amount of time in bed.

But in amongst filling and emptying the washing machine, we’ve had some great chats, in particular one about regrets. He explained he had none at all, despite everything, including growing up with a mum with a serious illness. He felt it only added to his compassion and understanding of what it is to be human.

Blimey. We mulled over some other points, and nope, he has no regrets about anything and he’s enjoyed finding out more about himself these last three months.

What a brilliant attitude to have at such a young age. Isn’t it weird when we find ourselves learning from our children? I thought hard about what he said, and I really do think from this point onwards, I may just adopt this way of thinking. Given the absolute hell of the filling out the PIP form, raking over every single aspect of my life and also reflecting back on this MS journey and more importantly, the journey that me and The Teenager have had together for the last 18 years, it is now time to look forward.

His excitement for the future is infectious. PIP is sent, there’s nothing else to be done apart from prepare for a fight. But that can wait for now. It is more important for me to count my blessings and concentrate on everything that is good in my life, and there are many things. The Teenager, you guys, my friends and so much more.

On that note, I’m off to stock up the freezer again …

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