There is an unspoken calm that washes over you when you’re amongst the people who hold your history, and you theirs, and not a word of it ever need be uttered. Home can exist in two places; friendships can survive the distance. I am happy in both. But at many points during this year, it has felt like I’ve been holding on or holding tight to many emotions. Grief and illness have been very present. During these times, there is no greater yearning than to hear the voice of a family member or friend shouting hello as they walk through the front door, putting the kettle on, and doing nothing more than to hold the space they know you need, but you’ll be reluctant to admit.

It was perfectly timed that we took a family trip back this summer. A few weeks of highly organized fun, devised on a spreadsheet, slotting loved ones into lunch gaps, evening meet-ups, snatched hours here or there. You start with a laugh and a “So, what’s new with you?” and spend the next few hours trying to cram in highly intense, life-changing moments that really need to be said in-person, so you’ve saved them up, but then they also tend to fall out of your mouth in a funny, intense, and chaotic format that can only be likened to the cadence of speed dating. At the same time, this dialogue is interrupted by the needs of my two very busy children, often with a ball hurtling towards my face as someone yells “Catch,” which is so juxtaposed with the trauma you might be quietly re-telling that you have to shrug and laugh it off.

My therapist and I were debating the benefits, or not, of really letting go. I’d like to think that I don’t hold back, that I’m turning up authentically, but I think it’s also true to say there is also a protective layer about how deep each day you want to go when bringing up the trials and tribulations of life. “Yeah, it’s great, life is good and… hair seems to be falling out, eternally tired, ongoing and persistent anxiety, hospital appointments galore for my son, impending doom threatens twice a week with a sprinkling of general catastrophizing, parenting is hard, wonder if madness is descending, always wondering what to cook for dinner, do I have a defiency or seventeen, sweating generally, but yeah, nothing to complain about. How about you? Your mum well?”

There is a little joke between my husband and me that here, in this written space, is where he truly gets a picture into the mind of his wife. And he’s probably not alone. I suspect friends and family can feel a little like that too, but perhaps this is why I love it so much: it’s where I work myself out too.

By now you might have worked out that there was barely any downtime in our time back in England, but it was gloriously full of so many amazing moments. The boys are at an age where London is exciting and buzzingly busy, and we hopped across town on buses, in black cabs, on the underground, and danced on the green in front of Big Ben as it chimed. I walked across Westminster Bridge for years when I worked in London, and to see it through their eyes was to see it again, and not with my head down, rushing to my desk.

Right in the middle of our stay, my husband and I got to saunter off to Spain, without the children, for a few days with six friends. A small town nestled around a cove, an hour south of the French border, was our little haven. Breakfast was at 11 a.m., lunch around 3 p.m., and dinner at 9 p.m. The town had half a dozen restaurants, all excellent. We talked a lot, played cards, and had table tennis tournaments. I can’t quite work out if those behaviours mean we’re hanging onto our youth or an indicator that it’s in the rearview mirror. Either way, it was what we all needed. And do you know what I recall as a core locked-in memory: swimming in the sea, the glistening azure of the Balearic, held up by the salt, and looking around at the beauty of the cliffs and just being very much in the moment.

Talking of which, my lovely step-mum recommended The Way meditation app, which is an absolute tonic to the chaos of life. You choose how long you want to ‘sit’ for; it can be as short as 10 mins, and the calming voice of Henry Shukman (real person - how novel!) takes you out of the noise and into some calm. There are no tracks to choose; you just turn up each day or when you can and continue on the program. And calm is what I need to be my friends, because I can be one word away from a stress response, which is very bad for one’s health. Yoga is back on my schedule, and Hatha yoga- wow, that was a new one to me, but very impactful and often contortionistic. Parts of my back have moved that I swear have been fused for years.

I was talking to another mum the other day about our medically complex children and how helicopter parenting is on another level when it comes to keeping them safe, and she laughed and joked, “I’m going to die 10 years earlier from the stress, I swear!” I laughed too. And yet…our bodies keep the score. Holding On needs to transfer to Letting Go - so, best foot forward on really making an effort to take everything down a notch or seven. And with that in mind, I’ll leave these ramblings here, get my trainers on and get some fresh air. More soon x

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Here is the list you didn’t ask for, but maybe it’ll also take you down memory lane (please tell me in the comments what you loved and hopefully still do!). What you might deduce from the below is that, as a nine-year-old, my interests were closely aligned with those of many people aged over 60, but hey, I’m here for it.

1. Historic Country Houses: Living in England, there is probably some statistic that you’re never further than an hour from a National Trust property, so I’ll be the first to say I was spoilt with proximity. When visiting these magnificent old homes, I used to hang back on the school trip or on a visit with my family, and try to be in the courtyard or the corridor on my own, imagining the people who had walked on the cobblestones or the floorboards beneath my feet. The most exciting house of all was Hever Castle, the home of Anne Boleyn, the second wife of Henry the Eighth, which also sparked a love of royal history. If you love royal historical fiction, look no further than Philippa Gregory.
   Rebooting the interest: Living in the US, the historic houses are not quite as locally plentiful, so Lady Carnarvon's podcast at Highclere (aka Downton Abbey) is a recent find and absolutely joyful! Full of eloquent voices, glimpses at another way of life, history, dances, and a jolly good time. She was interviewing someone who was describing the sport of polo and picking up a new horse, and you don’t need all the details, but the interviewee said in a throwaway comment, “….and I was wearing Argentine sandals!!” In much the same way, I might say “Flip-flops.” And I adored that they laughed together about this, and I had no idea what it all meant, but I immediately wanted to be their friend and own such sandals.

   

2. Whales: Do you remember at school when your teacher gave you a project that gave you free rein to learn facts, draw the accompanying pictures, and generally become the village expert on your chosen subject? I chose whales. Located in a small village in the Kentish countryside, far from these magnificent creatures, they were my thing. Did you know whales sleep one half of their brain at a time, called unihemispheric slow-wave sleep. One half of the brain sleeps; the other half stays awake, alert, and vigilant. Not unlike the sleep a parent gets from birth to…eternity? Whales…definitely my spirit animal.

   Rebooting the interest: I’m not one for boats, and there is evidence that the noise pollution and disturbance of them can cause whales and other marine animals a lot of stress, so I’ll make it my mission to take some coastal walks near San Fran when there is a higher chance of seeing them on their migration. What a joy to even know they are passing close to where I now call home.
   

3. Baking - I used to sell Victoria Sponge cakes to my mum’s friends on weekends and earn a couple of pounds, and out of all the time I spend in the kitchen, baking is the thing I most enjoy. A sweet-toothed rule follower is the perfect combination of personality traits for enjoying baking. The precision of weighing out the ingredients brings me zen, and when a friend left a porch gift of a bag of lemons from the garden, these quickly became two lemon loaf cakes, one returned to her porch in thanks.
   Rebooting the interest: Look out, neighbours and friends, sweet treats will be turning up, because there really is no occasion needed to appreciate the rewards of pre-heating that oven and getting to work.

   

4. Home Economist Meetings: One of my favorite hobbies as a child was not letting my mother out of my sight, and as a result, she often found it easier to bring me along to her evenings out. (Sorry about that, mum, and see below for evidence). Therefore, I was lucky enough to join a number of Home-Ec meetings, as they were called. The membership included a quarterly guest speaker and, of course, food. Notable presentations were by a milliner, so we got to try on lots of amazing hats, and best of all, Marguerite Patten, CBE, came to talk about the war, and her broadcasting, where she shared ration recipes and went on to write 170 cookbooks!
   Rebooting the interest: I’ve just booked an author talk in my local town, combining not only live conversation but also writing, my ongoing passion! Win, win.

Clingy child evidence continued…
When I was asking Mum to find the photo of me at Hever Castle, she unearthed this one, which made me laugh out loud. If evidence was ever needed that I never left her alone, this is it, and just look at her face, where we can all see this woman just needs a few minutes break to enjoy her cig and wine alone, but no, there I am, attached to her as usual. Mum has always looked a million dollars, and still does, and I’d still have her within arm’s reach if I could; she’s simply the best. And by the way, weren’t the 80s glorious, collapsible summer chairs that would envelop you like a venus flytrap, no seatbelts in the back of the car, passive smoking - who cares, kids running wild in the countryside all day with no tracking available, telephone boxes annoying the operator…reverse charge calls! Oh, the memories.

Thanks for reading, and don’t forget to tell me what you loved doing as a child below. I’d love to hear!

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I opened the email from the editor and nearly left the room, like when you pop a glass over a giant spider on your kitchen floor and scream as you run away, before building up the courage to go back and deal with it. Writing the book took me a lot longer than anticipated, and as such, I knew parts of this book were rawly written, with the words she read unchanged from the moment they’d popped into my head as I typed. There was no time to go back. Thankfully, as I scanned the editorial letter, my nerves began to dissipate as I read things like “This is a lovely, heartwarming read, that I very much enjoyed reading. I love the overarching themes….”

I think I high-fived the air in front of me. As I made my way through the document, where she excellently observes many things I can tweak and enhance, I reached her conclusion.

“As you can see from these notes and inside the manuscript, this doesn’t need a huge amount of work…the novel is in good shape, with a little bit of work it will be in excellent shape instead.”

WHAT!? I think I stood up and danced around the room a little.

So, before we all get carried away, and we’re talking book launch plans at Waterstones/Barnes & Noble, here is the truth about the publishing world right now. It is extremely hard to a) get represented by an agent, then b) for the agent to successfully pitch it to a publisher. There are tales of over ten years of trying, six books written before the seventh makes it, insane amounts of rejection, and a really long slog. Here is the other thing: right now, there is a pretty narrow field of what’s hot, and it’s not women’s fiction, which my book falls into. Plus, it’s not got that one-line hook that gets noticed. A lot of buzz right now is around YesterYear - the story of a ‘trad-wife’ social media influencer who wakes up in 1855. This perfectly optimizes that one-line hook.

So once the book is perfected, I might try to find an agent who is trying to fly a flag for women’s fiction because my editor said she’d still recommend I do that, but I also know this first book might end up being self-published, which has actually become a route many established authors take when the big publishers aren’t really investing in broad genres. Or for authors who want more control over their creations.

Investing in an editor to review the book has been so helpful editorially, but it’s really been about gaining the confidence to believe I can write a book people will enjoy reading. Because I can tell you: during the process, you want to set your manuscript on fire and take up painting.

I’ve got just over two months before we come back to the UK for a little summer trip, so perhaps that's when I come laden with revised copies to hand out to my circle of first readers, to get their important feedback as well. Wow, that just made my stomach lurch, too. Who knew that writing a book would unlock a new level of vulnerability…but in the spirit of sharing, and for those who are asking, here is the draft synopsis of my first novel.

Life’s Work by Kate Wears

After fifteen years in a London career that defined her, Amie loses her job and with it, her sense of self. Retreating to the hometown she always planned to leave, she takes work at a small café she assumes is temporary.

Just as she begins to question what a working life is really meant to add up to, the past arrives uninvited: an estranged father, a half-sister she never knew, and an ex-husband who won’t stay gone.

A novel about work, worth, and what we find when we finally stop.

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I’ve wanted to write a post for a long time, but I had to stay so focused with any spare time I had and just plow through writing the book. Last week, I sent it off to the editor, paying for some feedback, of which I know there will be a lot!

Ideally, I would have had it completed in February, with two months to rework the areas I’ve already marked with a big ‘NO, re-do this’ comment next to them. The reality was writing the last chapter the day before my deadline without any time to go back and improve. Can you imagine where I’d be if I didn’t have the deadline? Probably still in Chapter 3, procrastinating.

It was much harder than I expected. I’ve started to write a few books, and they’re a few chapters in, but left abandoned, maybe dusted off one day. But there is a reason many people start and few finish. You have to get over the voice in your head that says stop. It reminds me of running, and that most of the time, for the first 20 minutes, your body is screaming, " Nope, this is awful”. Then something cool happens, you get into a rhythm, and suddenly your breath feels easier to control, the distance you set out to achieve feels attainable. You start to enjoy it. Writing for me is like putting on those trainers, every single morning at 6am, even in the snow. You’ve got to get those miles on the clock, the words on the page.

This time, I had the help of Save The Cat! Writes A Novel; it guided me on the structure and acknowledged the toil and relentlessness of the middle part of the book, when you’re too far in to give up but also wondering how on earth you’ll finish. When the book comes back from the editor, a new phase will begin. Paying close attention to every character arc, sentence structure, description, and the main thing I fear amongst all of it - is it boring?

I wanted to write something with heart, but not traumatic; I wanted drama without tragedy. I want to pick up books like this at bedtime, when personally, I feel there is enough trauma in real life that my nervous system needs a little gentle stroll in a kinder world before I go to sleep and enter my crazy dreams. That’s the goal, and hopefully, in the next few months, amongst the rest of life’s demands, I can get it there.

I’ll bravely declare now that I’ll let you know what she thought, warts and all!

Death Flower - She’s Still Alive and Thriving!

The time it’s taken me to write a post has given her ample time to continue her march upwards, and now is sprouting what can only be described as slightly disappointing flowers. I had hoped for perhaps a huge bloom, in vibrant colors, but it’s more reminiscent of broccoli florets. I have no idea when she will peak and begin her final move into permanent dormancy, but here she stays and tall she stands.

Until next time, which will hopefully be soon! x

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I am glad December and all the festivities were unaffected, because although we stayed at home, we had slow days sandwiched between lots of lovely social occasions. As an expat, when you hold an open house on Boxing Day, it feels very special and sometimes a little surreal when you reflect on the new family you’ve grown here. There is always a good amount of British accents in the room as we can’t help congreate and reminisce about M&S food, or bacon sandwiches, but there are also American friends who are so kind, welcoming, and find us endearing when we invite them over for a ‘cuppa’ and wonder where we’ve put our ‘jumper’. One of our ex-pat friends had been in London the week before Christmas and turned up with a dozen mince pies and a box of Heroes. Total legend.

As you can imagine, writing of the book has been pretty much non-existent since the children were out of school, so I can’t wait to feel better and dive into those chapters soon. My intention was to do that yesterday, but I sat at my computer and instead felt compelled to write a poem. The husband called and asked about my day. I declared, “I’ve written a poem, and it properly made me cry.” I could almost hear his head shaking over the phone as he laughed and said something like I’m weird. I wholeheartedly agreed with him and explained I’m a creative, and we have to go where our art takes us, as I laughed back. But maybe there is an element of truth in that. Poetry has always been something I’ve enjoyed, and this medium was my first published piece of writing at the Bethersden Harvest Festival Show in 1988. It was about a fox. Maybe I’ll lean into the poetry now and again when it calls for my attention, so I’ve included it here, too, for you to read. If poetry is not for you, keep scrolling for the death flower update.

A good way to enjoy poetry is to read it outloud, so give it a go.

“As Long as It’s Healthy”

I know why they say it
it’s obvious, yes
we all want our health
we can fix the rest

Girl or boy, they don’t mind
But “As Long as It’s Healthy”
That is often the line
The line that they mind?

My son, well, on paper
he doesn’t have health
life-threatening in fact
he does not have the wealth
of a clear path ahead
but hang on, is that true
pink or blue
pink or blue

This child, this wonder
this miracle boy
how blessed am I, to enjoy
this experience with him
that no one could foretell
and still to some, not defined as ‘well’

I get the sentiment, of course
I probably uttered it too
but now living in this place that we do
alongside the darkness
that makes the path ahead unclear
are blinding auras of love
that light up what’s near

I get to see the magic unfold
a boy fighting the odds
a tale that I hold
with pride in my voice
and sometimes the hint of a crack
as long as it’s healthy
yes I’d take those words back

I’d not change this boy
he’s the best person I know
And I pray that his life means he can go
far and explore and
do things on his own

Of course, I don’t really mind
when people say ‘healthy’
but don’t count out the lives
that are inexplicably messy
because unhealthy can actually mean
so much more than you thought
precious, delicate, and resiliently fought

And I say run to these people
and share times with them
bask in their child’s light
radiating from within
You won’t need to ask it
because you’re right, there’s fear
They have one wish for their child,
“As long as they’re here.”

In case that evoked any kind of emotion, here’s what you need…

Death Flower Update

Here she is, and boy, hasn’t she grown! We now get looks from passing dog walkers at what this plant is on course to produce, and by all accounts, at some point, the top of the giant asparagus will bloom with some kind of flower. But until then, she’s marching skywards.

I included a side angle so you can marvel some more.

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This week, we passed on the same trust and hope to my eldest. The chance to venture to the park on his bike on his own and have a grand old time. The rules were clear: you are either at the park or on the three streets between our house and the park, and therefore on your way back. I will tell you this, friends: he was gone so long that we snuck into the car and checked to make sure he was still there. Twice. Three hours later, he returned. Victorious. Two new friends, and a meeting time arranged for the next day at 10am (none of them have watches).

It was a victory for us too. To see him alive with the freedom I know he has craved for so long. He is my firstborn, loves control, and is a perfectionist; he might look like his dad, but his character is pure me. To give him the gift of setting his own agenda, of being in charge of himself, felt like a wonderful milestone for us, too. The next day, he upped the stakes and declared he felt ready to visit the shop right next to the park. He took his wallet and pocket money, promised not to buy anything ultra-caffeinated and off he went. I visited the park on my way out to meet a friend, and he was riding around with his goods. He’d purchased a FAMILY-size packet of Flamin’ Hot Cheetos—his very own version of too many penny sweets.

It is with that same euphoria that I am now leaning into the fact that I also have an abundance of freedom, and for it not to be feared. Truth be told, not working comes with quite a large amount of guilt. I’m not contributing in the monetary sense. I see my husband work hard, as I sometimes skip off for a coffee with a friend, and it’s a very strange experience, not unlike bunking off school. There are still things to do on the household front that arguably should have been done already, like tidy up the understairs cupboard or that drawer in the kitchen. However, I’m also realistic that there will always be a junk area or two because if we’re honest, where do those money off vouchers, pink paperclips, and a running phone holder, waiting for a run that might happen tomorrow/never - where do those things want to live but in a drawer in the kitchen? It’s the heart of the home after all.

I have started to get into a routine, though, and have committed to writing at least a thousand words a day on the novel I’m crafting. I’m on chapter 8 and just over 16,000 words have been created of my little world that truly comes to life as I type. I was thinking there needed to be a minor character that features in a small way in a few of the chapters. He literally walked into the scene as I typed, and he is not at all who I thought would turn up. That probably sounds a little crazy, but I guess it’s allowing the subconscious to take over for a while and harness the power of imagination. And he had a dog! He clearly needed a dog by his side, and so did the story.

I’ve tentatively booked in for some paid editing in mid to late February. The editor quite rightly wants to check with me nearer the time, as, like many people she’s worked with, we all have grand plans for completing a novel, and there will undoubtedly be some sticky moments of writer’s block. Before agreeing to work with me, I had to send her a sample chapter to see if this was a project she wanted to help edit. Sending those 2500 words off was genuinely terrifying, but she said yes, and that felt like a good boost to my confidence as I chip away at getting the idea from my mind onto the page in a way that leaves you wanting more.

It will be no surprise to some of you that I have a word count spreadsheet, and with a target of 90,000, I am, as of today, 18.02% of the way there on the first draft. An extra 4,673 have already hit the cutting-room floor; we’ll call that the warm-up prose, but I’ve kept them to revisit if need be. There is probably a terrifying statistic out there about how much of the first draft actually makes it, but I’ll confirm that for you in 6 months. But for now, I have some words to chase down, who knows who might turn up on the page today!

Before I go, though, I must tell you about a cactus. The previous owner loved them, so the front garden is strewn with these spiky and enormous beasts. Gardening is an exercise in trying not to get impaled on the very sharp ends, and they are taking over with baby cacti popping up everywhere. I’ve been moaning to the husband that this winter it’s time for them to go, which will involve a chainsaw and then vigorous digging, so it’s not a small undertaking. The largest of the cacti is probably now 7 or 8ft high, and I wondered at what point one of the cats might fall into its core, never to return. Then, suddenly, two weeks ago, I noticed something happening: a different leaf had appeared, and it turns out this cactus is the kind that has a ‘death bloom’. At the end of its life, it puts all its energy into a single flower that can reach 15ft high before the entire plant dies. What a way to go!! I have a newfound respect for the beast I have been moaning about; she’s on her final chapter, a magnificent crescendo. I will keep you updated on the progress of the death flower. I know you are now as invested in her final act as I am.

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I had a character in mind, a fierce mother, who is in a similar position to the one I am in, living with and fighting for a child with a rare disease. But this story had more drama, a faster pace, and lots of twists and turns. I’ve had so many incredible experiences in this world and have many observations that could find their way into a work of fiction. Last week I sat down and began Chapter 3, as I’d jotted down the first two chapters earlier this year. During that morning, as I’m doing some more research and developing the plot lines, that horrid feeling creeps across my chest, the one where it feels tight, and I can’t fill my lungs properly. It’s not a panic attack, but instead a wave of unease that I know can linger and be hard to shake.

It turns out I am in no way ready to write a story about a rare disease, or put myself into a fictional character who has to go on a journey that is much more extreme than the one I am living. I had no idea this writing would elicit such a visceral response, one that would also manifest physically. It’s just a story after all, but the process of writing and the deep connection you want your reader to feel requires, as the writer, a lot of literal scenarios to run through your mind.

Spoiler alert: the story ended up being a good outcome, like they often do in fiction, but I realized I was not prepared to go on another rare disease journey when the one I am on is more than enough. It all sounds so obvious now, and perhaps there was a little naivety that the process would be cathartic as I get to write the happy ending, but no, it is not meant to be. I think my confessional writing about a rare disease will always have a home here and remain as an observation on the life we’re leading. Maybe one day it’ll turn into more, but for now, I will turn my attentions to a different narrative.

A good piece of advice for any writer is to write the book you want to read. I adore reading; it is one of my greatest pleasures, so I turned to my own library for inspiration. For me, the books that live long in my heart are character-driven fiction, often family-based, where the protagonist feels like someone you know, someone it can feel sad to let go of at the end. An evocative setting that is sensorally rich. A subtlety that leaves room for your interpretation. A book that is poignant but ultimately uplifting. These are all the elements I enjoy, so this is a great place to start.

One of the ideas that I started in 2012 and had promptly forgotten about came back into my mind in full force last week, and the first 5000 words of it that had been completed will not see the light of day, but the idea has stood the test of time and is now developing at pace. It is precisely the type of novel that I would like to read, and the type of characters I’d love to meet, so that is now the plan. When I needed it to appear, this story came back, so perhaps this is as it should be; this is the one that wants my attention. This is the story you also need to read.

Talking of stories and self-expression, we had the most wonderful weekend with creative expression taking the form of Elphaba for the school Halloween parade and watching a children’s theatre production of Annie. The teens and children blew our socks off with their talent, and this weekend coming, it’s the turn of Beetlejuice Jr that we get to enjoy. Theatre, live music, a gallery, all things that reconnect us with a narrative to get swept up in - so here’s your reminder to book something and support your local arts projects.

From me and Elphaba, have a great rest of your week x

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Most of you here are friends and family, and I know you would encourage me in anything I turn my hand to because you are wonderful people. I am so grateful you are in my corner, but having someone whose books adorn my bookshelf, who also thinks that the way I arrange the vowels and consonants is pleasing, well, that had a little bit of magic about it.

Writing is a funny game, and from everything I have heard from the husband, it is a lot like golf. Some days you turn up and you are whacking that ball as straight as an arrow down to the green. Seemingly nothing has changed between holes 6 & 7, but suddenly you’re in the rough, every bunker is a magnet, and you wonder what the hell happened because an hour ago it all felt great.

The biggest thing I am learning is to write it and not look back. Nothing talks you out of that second chapter faster than reading the first one and determining it is utter shite. Because that’s what you’ll do, and it’s no wonder. You are typing to keep up with the stream of consciousness, and it’s messy and muddled, and that is precisely what a first draft should be. The personality traits that make writing hard for me, despite the creative joy it brings, are my control-freak and perfectionist tendencies. I want to get a plot down and have a nice plan/graph/moodboard that gives me the structure to start each day. But I’ve learnt that this planning instinct is actually terrible for me, where creativity is much more effective when it's improvisation rather than rehearsal.

I recently finished On Writing by Stephen King, and his method is not to focus on a plot; he just starts with an idea and sees where it takes him. He describes the jumping-off point for creativity with such ease, and we might all recognise it from those creative writing classes in school. Think of a situation and off you go. Just last night, my eldest was asking how to develop a story he was working on. His story medium is drawing stick-figure characters who get into all kinds of antics. He wanted inspiration, and I casually said as I left the room, “How about when we were camping, what if when you and your friends were performing your skit, you opened up a portal and swapped places with another scout group on the other side of the world doing their own skit. What happens next?”

Isn’t that instantaneously so deliciously exciting! And off we go. We create.

Elizabeth Gilbert, of EAT, PRAY, LOVE fame, wrote a book called Big Magic, all about living a creative life. Whilst most of the time the craft of a book is a lot of perseverance and toil, there are moments of wondrous magic where you are more passenger than pilot on what your character says or does next. She also believes that creative inspiration can be given to you, but if you leave it too long, it will pass along to the next person.

So we'd better get on, hadn’t we? You’ve all said yes, Clover gave me a boost of confidence, and unemployment means I effectively have a big flashing neon arrow sign above my head that says ‘Writer.’

Chapter 1 is down. Chapter 2 has started, and what I can tell you is that we have a fierce mother as the protagonist who may just have some shared experiences with my life over the last five years… oof, and this woman is on a mission.

You’ll all be my accountability coaches, so expect to hear updates on progress and, no doubt, the many ways procrastination shows up — but we will crack on; we can do this!

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So the antidote to screen time is Scouting America. Hooray, we’re saved!
Back in the 80s and 90s, you would find me on a Monday night, in a dusty, cold village hall, for our weekly Brownies and then Guides meetings. We were dropped off and shuffled into the hall to sing, dance, act, play games, and it was all jolly good fun for me, less so for my Brown Owl, who found me a little challenging, with too much to say when it was neither warranted nor requested. One of the best nights I remember was a casino night (yes, you read that right), where they sectioned off the hall into ‘rooms’ with old curtains, and in each, there were different games you could gamble your fake chips on. It was fancy dress and I went as a flapper girl fashioned from a green disposable tablecloth, complete with a long cigarette holder and an actual unlit cigarette. Weren’t the 80s a wonder!

Parents would go home with a couple of hours to sit in a quiet house, or maybe they all went to the pub, who knows, but it was parent-free fun. But times have changed, and in America, parent participation is mandatory, and not something we anticipated but have really grown to love. We get together with the pack to race homemade wooden cars, and this week it’s the recycling regatta where bottles, corks, and tape turn into boats and are sent down drain pipes aided by hairdryers, and it’s, well, it’s so fun. But the biggest revelation has been camping. Many Brits over 40, like me, have likely experienced numerous camping holidays in their youth, and the one thing that makes camping miserable is the rain. I have camped in many locations in the UK and France, and by the time I could afford my own round trip to Kavos, I had firmly decided that the days of camping were in my past.

Yet, today, I now have an REI membership, and we’re becoming regular campers. Just this weekend, we took our last official scout pack camping trip of the year, at a campground near Lake Chabot. We were high up in the mountains with a view of the bay, surrounded by nature. The children were climbing trees, sword fighting with sticks, learning knots, and we even went fishing. We do get rain here, but at this time of year, it’s not too frequent; however, there is one thing that I am still getting used to—the wildlife.

The UK might have rain, but it doesn’t have rattlesnakes, black widows, and bears. I’ve only seen a brown bear in Tahoe and, more locally, a rattlesnake sunbathing on a trail that I promptly decided was not worth walking, so I turned around. This time, we had a family of raccoons that would descend on the bins at dusk to eat the leftovers. They look adorable, but one nasty bite later, and it’s a trip for a rabies booster, so you keep a healthy distance. Turkeys roam wild here too, and they decided to begin their morning call at 4.30am for one hour. At first, it sounded like it was being killed, such was the screeching. This quickly conjures an image of a mountain lion nearby having its breakfast, but no, it just had a lot to say. Thankfully. Needless to say, you have a great respect for the wildlife in the US, and you can forget those middle-of-the-night bathroom trips; I’m holding it!!

No scouting campout is complete without skits. For those unfamiliar, they are short, comedic, acted-out scenarios. Each skit has a history, many of which are handed down through the generations, and the scouts also have the license to make up their own. As I’ve described before, I worry about my youngest being able to join in, but over the last year, he has developed a confidence I am in awe of. He recently performed Wicked for some friends, delivering a 20-minute show complete with songs and dialogue, showcasing his uncanny ability for a lovely vibrato in his voice.

On this camping trip, he was in the thick of the performances, along with his brother, and I reflected again on how wonderful clubs are that provide this kind of creativity, where the support of the audience overcomes any performance reticence, and where all expression is wildly appreciated. Josh and two new buddies performed a completely bonkers skit, like a crazy dream that went on for three minutes, and we all adored seeing them laugh and have fun.

So we’re now at the stage of our life where we’re eagerly awaiting the opening of camping reservations for next year, as they sell out as quickly as a headliner around here, and our Amazon wishlist is full of travel tables and outdoor kitchen gadgets. There is something immensely satisfying about packing games, a book, and a flask, leaving behind the ability to connect with all manner of devices, for a far more profound connection to nature, to each other, and to a more straightforward way of life.

Next time, an update on the job hunt, and my perspective on my next ‘career’.

My best friend and I leave each other podcast-length voice notes on WhatsApp and get to unpack each other's situations and mull them over without interruption. What a lovely thing! We don’t jump in on one another; instead, we get to listen to a one-way personal therapy session. When you’ve known someone since you were 11 years old, there isn’t much of your personality they have not seen, dealt with, or challenged you on. She made the best point about how many people would love to be able to give up a job without having another one to take its place. She is so right, and it’s something I’ve been thinking a lot about too. Yes, we are eating into our savings, but we can keep the roof over our heads whilst I sort out this next step, and I am so grateful and privileged to be able to do so. But I also think there is a wild, perhaps some would say reckless, nature that I, as a rare disease mum (and Sagittarian), have embraced. Life is too short and precious to be doing something that is causing you immense mental strain. I’m much too self-depricating ever to declare a L’Oreal “because I’m worth it” mantra as I take my last paycheck and saunter out the door, but you bet I wear the t-shirt that says “This is not worth it.”

I think our expat life also influences this perspective. We have been here six years, but we have no anchor or connection to this place other than the lovely memories and friends we have made. If things don’t work out here, nothing is stopping us from finding a new place to call home if opportunities or necessity dictate. The ex-pat mindset perhaps gives you an "overnight bag is always packed” mentality. Not only is the Bay Area highly competitive, but it is also highly transient. Mum friends come and go, mostly go, because of the cost of living, or new job markets are opening up in cheaper places. The cost of being away from family can be significant, but it also affords you freedom. So maybe I’m in a mid-forties crossroads/experiment, and we’ll see where I land.

Do I…

a) Use the time I have now to write the damn book that I’ve been threatening to do for years.

b) Try and do some freelance/contract work and back myself that I can use the skills and be my own boss?

c) Get whatever job (in marketing or not) to pay some bills and afford me the time I want with the kids. (My eldest suggested I become a teacher!! Which is very flattering, but I can’t control him, let alone 25 of him.)

d) All of the above… : )

You’ll have guessed I droned on about all of this to my afore-mentioned best friend a few days ago, hence her sage viewpoints and stance. She also had some instructions.

Go for coffee. Eat some pastries. Do some writing.

So I did, and thank you for reading it. Now, please vote x

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And why do we do it?

Because, if not me, who?

Ask every board member, volunteer, and fundraiser - it is the few, not the many, who are the changemakers, and it can be exhausting. It is, in so many ways, extremely rewarding, and maintaining the balance between these two things is a dance that all Executive Directors must master.

Our fight is to try to save the lives of people with Myhre syndrome, and when we got our diagnosis in 2020, I dived right into working with the foundation as a volunteer, board member, president, and ED. Without a doubt, this organization and the people who run it saved me. My therapy was about taking action and helping the cause for my son and the community, but it also meant I got to be around people who, without a word being uttered, understood—understood me.

A rare disease diagnosis is isolating. Everything looks familiar; you’re in the same house, and the sun still rose when it was supposed to, but you are suddenly alone on a journey that even your partner can struggle to understand. The human species is unique as it takes us a very long time to nurture our young. Some might say that on a practical note, it’s during the teenage years that our offspring become capable, others will tell you it’s a lifelong responsibility (and I’d agree (thank you, Mum)). So when your child is diagnosed with a life-threatening disease, and you have to become the expert in their care, educating yourself, making sure they see who they are supposed to, and are tested at the right time for new developments, for every single body system, your world becomes a very different place to the one you used to live in. There is a huge responsibility to get it right, because if you don’t, things can go wrong very quickly. So how do you become an expert? In steps the Myhre Syndrome Foundation.

I could write all day about the wonderful people I have worked with over the last five years, the supportive community members who give so much when they are facing the daily challenges this disease brings, plus the broader group of family members, partners, friends, and the clinical teams who keep the momentum going. However, I realized I needed to make a change after attending a meeting with a group of lawyers earlier this year.

We were fortunate to be recommended and receive pro bono legal assistance from a large national law firm. I was on a video call with them to provide an overview of the organization. The day before, I’d learnt that a young man in his twenties with Myhre had lost his life. His family had shared pictures and videos, and he looked just like my son; they even shared the same mannerisms. I started to talk about our mission, and had to turn my camera off as I felt a wave of emotion course through my body. That feeling when you’re holding on tight as you try not to break down. I coughed and croaked my way through the next few moments and pulled myself together enough to get through the call. The next few days were so hard, the video of that young man playing over and over in my mind. He sadly wasn’t the first person lost to Myhre, but this one hit me differently. I didn’t have a plan, didn’t have another job, but I knew in my heart that I’d reached that point where, emotionally, I couldn’t keep going. I couldn’t keep up the professionalism that I pride myself on. I took a few days to think, but early the next week, I called my president and gave my notice.

It was a surprise to many of the board members, not least because, in the last 12 months, we had secured more funding than we dared to dream of, hired a Chief Scientific Officer, and pre-clinical research was underway. The next few years will be crucial for Myhre drug discovery, and it’s an exhilarating time. But those are precisely the reasons why now was a good time to hand on the baton to the next ED. The roadmap is laid out, the path ahead is very promising, and the funds are secured for this next phase.

But there was also another reason. My son is well. I cannot tell you, given what I know, how lucky we are that he is thriving. I know that things will likely change as he gets older, so I want to spend this time being present, putting aside Myhre syndrome research as I know it’s in the best hands, and choosing when I engage with new information or community updates. It’s time to give my brain a little reset and take the luxury that I have been given of being able to compartmentalize that he has Myhre syndrome.

Does it feel easy to do that? Heck, no! If I’m honest, I sometimes feel guilty for stepping away. The organization and the people there are like family; we’ve shared so much, but I know they are not going anywhere, and I will always support their mission. I’m planning my Move for Myhre campaign in September, our annual fundraiser, and I’m helping out with plans for the next conference.

I’m going to end where I started and recognize the hard work that goes into running charities. If you are passionate about something or want to see change, then please get involved.

If you have the time, consider volunteering or serving as a board member.
If you have the means, donate.

If those aren’t possible right now, spend a few minutes a week sharing with your network how they can help. One of our most significant personal donations in recent years came from a neighbor’s friend, whom we had never met. Our neighbor told our story. So whatever story is in your heart, make sure you say it out loud, because there are people out there who will listen and help.

If you can find the time to get involved, I promise you’ll find people with good hearts, and believe me, these organizations only continue to exist because of the passion and purpose new members bring.

Next time…I need a job!

1. Nothing beats a beach day.

Being willfully unemployed this summer meant we were watching the pennies leave the account without my previous salary helping top it up and keep us stocked up on Weetabix (don’t get me started on import tax), so our holiday this year was primarily at home, and if there are places to holiday at home, California is a real gem. I can bore you on the cost of living here and state taxes, but if you’re going to pay for the sunshine, well, you might as well enjoy it in your backyard. However, we did take three nights away and drove a couple of hours down the coast to Pismo, where we did all the things parents typically do on the beach.

• Spend more than a little amount of time deciding on the pitch location, avoiding teens, loud music, volleyball games, tidal patterns, and seedweed.

• Wrestle with beach chairs, tents, and blankets.

• Try to fight against the encroachment of sand into and onto those items and shout ‘whoa stop’ every time your kids launch into the tent, spraying the grains in your face as you brush them down and take off the top layer of their skin in some extreme exfoliation game.

• Explain to your kids that once they’ve got the sand off in the water, the idea isn’t to then launch into the nearest dune and coat their entire body in it like a sugar-dusted churro.

• Pack a picnic and make them eat sweaty cheese and ham sandwiches, that somehow have sand in them too, because that’s what you did when you were young, and it doesn’t matter that next door’s tent has a takeout pizza.

• Get caught by a big wave when you’re lifeguarding them, and every time come back with wet shorts and a wave up your nether region, muttering only to yourself “that was a big one” as your kids pass you by laughing on a boogie board.

All of this to me is joy. Pure joy. I love watching a child’s instinctual pull to spend large amounts of time digging holes and burying each other. I love taking a ridiculous number of photos of them in the sea, even though I already have hundreds. I love people-watching and spreading my toes in the water, taking that first gasp at its frigidity, and how lucky we were to see the fin tips of dolphins passing by. Maybe despite the general loathing of its existence, there is a little bit of magic lurking in those sparkling grains.

2. Losing all summer long

Let’s talk about sport. Kids sport. We left the UK when the boys were so little that perhaps it’s similar there, but when we signed up for summer baseball (a tournament you get selected for, which is cool), we didn’t realize that five days out of seven would be spent playing baseball. Practices, games all weekend, some midweek games, and……we lost nearly all of them.

It was a lesson in perseverance, in cheering on the final batter despite the game ending in a mercy rule (where the opposition is so far ahead that the game ends early), and in simply continuing to show up. Each of our players had many moments of brilliance, but it just didn’t come together this year, and that is okay. I’ve talked to my eldest about being a good loser because the fact is, that is where you will reside a lot of the time when you compete, so how you react to that moment is what matters. We have had our fair share of many intense emotions over the last few years, across several sports, as his team has appeared in four finals, earning four second-place medals after such close games. I know his time will come, and maybe when it does, that handshake with the other team at the end will be more heartfelt with understanding, because he’s been handed the same grace. Before school broke for summer, a friend who was on the winning team in the regular baseball league final, and one of the finals I mentioned above, said to my son, “You played so well, I’m sorry it didn’t go your way, I think you deserved it.” He said they spent some time talking about the game, and for me, that conversation between two nine-year-olds was the biggest win.

"Our children can be our greatest teachers if we are humble enough to receive their lessons." Bryant McGill

3. He can swim!

I am so fortunate that my husband has always been so good at teaching the children to swim. Living with anxiety can mean it shows up in particular ways, and one of mine, which also presents as an intrusive thought (I think I’ll do a post about those too), is my youngest drowning. Yep, heavy stuff…welcome to my brain!! I have recurring nightmares where he is in a pool and I can’t get to him, and I recognize these are as much about his diagnosis as it is about a realistic fear. So you can imagine my helicopter parenting was on another level when it came to taking the armbands off, but this summer, he has suddenly just gotten it! He’s still in that phase of just about getting his head above water, which is still terrifying, but he can swim the length of the pool without help. Plus, he has always loved diving to the bottom and now dives down 12ft in the deep end to collect the pool toys. You can imagine my state of mind, but he’s a pro. He’s always got this, and that’s something I need to remember too.

4. The best $100 purchase of my life

The garage in our house is not my domain, lovingly tended to by my husband, and extremely tidy. So, when I confessed that a Facebook marketplace purchase had been made, that he needed to pick up, but he’d need a truck, it dawned on him that the space he’d made last week from the last of the moving items was going to be taken up by something else. In comes table tennis. I challenge you to tell me a more addictive, all-levels-and-abilities game where you say, “We’ve got 10 minutes, quick game?” and then 40 minutes later, you’re still saying, “Okay, one more rally”. My eldest is absolutely humbling me with each spin and smash, and the husband has agreed that it is one of my better purchases, even though it’s taking up prime real estate space in his domain. Oh, and whilst we’re on the subject of games with paddles, go find a pickleball court near you; family and grown-up fun is guaranteed.

5. The older they get, the faster it goes.

The prospect of nearly 11 weeks of school holidays might strike fear into the eyes of parents, but now that we are three days away from them going back to school, I can conclude it has gone so fast, and I’m a little sad about it. I remember when they were babies, and a 20-minute double nap was a dream come true. The days seemed very long and somewhat monotonous, but now the months and years seem to be racing by. We have a little ritual on Friday and Saturday nights where they get to sleep with me. My role in the sleepover is to be in the middle, with one arm and leg draped over each of them as they go to sleep. I am simmering at approximately three thousand degrees all night, cocooned by two little raditators, regularly elbowed in the face, woken up by sleep talking, and as I appear the next morning looking like I’ve not long got back from a big night out, I proclaim, “Wow, I’m tired.” At that point, the husband reminds me it’s self-inflicted and doesn’t need to happen, and at that point, I remind him, it’s absolutely happening until they decide otherwise.
I don’t know if my awareness levels about the privilege of being their mum are heightened due to our circumstances, and with another three beautiful souls lost to Myhre syndrome in the last month, I am grateful for the reminder to look up, to take it in, to be thankful.

So often songs say it better than I could, take a listen to “These Are The Days by Corey Asbury.”

So tell 'em bed time stories, give 'em a kiss good night
Darlin’, before we know it, this old house will be quiet
I know we're tired right now, someday we'll laugh about it
Let's slow it down and raise a glass
'Cause these are the days that we'll want back

I owe you a few posts, so I’ll get working on those, and for all my UK friends, here’s to a fantastic summer holiday, making memories, and giving yourself the grace to take as many duvet days as you all need x

It was now time for the wedding…

There are certain times in your life when you wonder if you’re an old soul, and over-indexing on the appreciation of being on a bus with pensioners trundling its way through Warwickshire was one such time. I adore the older generation, shaped by summers with my granny, where we’d hang out as a posse of octogenarians and me. Wonderful times where I’d happily cross stitch and they’d talk about the war, the panto script, deals on at Morrison’s, and demonstrate a clear and deep obsession with the weather and Wimbledon.

I’d taken the train to Leamington Spa and then walked into the small market town to the Stand A bus stop, where I joined the cohort of ladies and gents making their regular trips. They all knew the bus driver, who took time to greet them. I got on last and pronounced the name of the village wrong, to a few chuckles from within, who then took me under their wing, as it was clear I had no clue where I was or going. The following 20 minutes, swinging along the route, were delightful. Not only was the road sandwiched between verdant fields, but it also appeared that everyone wanted to know what this new person, with a small suitcase, was doing on their bus. Imagine the gasps when I proclaimed I’d come from San Francisco. This diverted them all to name the nieces, nephews, cousins, or the next-door neighbor’s youngest, who now lived in California, Texas, Singapore, or Sydney. I wish I knew them when they offered up their names to me, with an expectant pause of recognition, but I was glad to hear that Lisa is doing well in Houston.

They gave me a countdown to the bus stop. “Five to go,” I’d hear from the back. “Last one coming up,” as I smiled and readied the belongings. I waved off the number 63 after it left me safely on the edge of the intended small town, ready to find my Airbnb for the evening, and more importantly, ready to see my dear friend get married. Attending a wedding alone is exactly what this friend did when they came to my wedding party, but where our two experiences differ is that I didn’t end up running the bar and getting everyone deliciously sloshed with heavy pours. Any nerves on my part soon eased when I got to catch up with old work colleagues and friends of his, whom I hadn’t seen since his 40th birthday celebrations. I’ll leave him to write about that weekend.

I can tell you that if you wanted to take a break from explaining your family situation and your journey with a rare disease, that working for the charity is not a wise move, as one of the favoured handful of questions when getting to know your new wedding party friends is what you do for a living. But it’s a privileged place where people often respond by sharing their journeys, and there are many more of those stories behind those brave smiles than you’d think.

The day was full of love, abundantly clear on the faces of the bride and groom, who didn’t seem to be nervous but instead in a bubble of joy and fun that we got to witness and be a part of. There were as many adults as children who dashed amongst the legs of their parents and hit up the sweet station on every lap of the room. We were called outside for photos, and on a crisp December day, we had snow raining down and a special visit from two adorable reindeer complete with sleigh and the big guy.

I fell into bed just gone midnight and was back on the bus by 9.30am with some new older pals recounting the wedding, and of course, the whole San Francisco story, because you better believe when you’re in Warwickshie, when you enter a bus stop, you will get questioned by the locals, of which we’re all the better for.

I got back into London mid-afternoon and checked into the gorgeous Conrad in St James, a real treat and a stone’s throw from Buckingham Palace. Walking around those streets and parks evoked such a sense of familiarity and grounding. Iconic streets like The Mall, where years earlier I’d been working the RideLondon event, or many fitness levels ago, crossing the line of the London Marathon. Home was the shades of green in the park, the specific yellow of the double lines on the road, the period houses, narrow and tall, lining the streets for as far as your eye could see. These were the houses where you hoped the windows were left unmasked so that you could get a sneaky peek at the grand rooms within.

I’d walk at any opportunity, and the following day, I made the several-mile-long walk to Battersea Power Station, now a trendy new destination of shops, restaurants, and, as it turns out, a seasonal ice rink. Meeting me at the ice was my brother, and in my wisdom, I had booked this funny activity as a surprise, an ode to our days at Gillingham Ice Rink, tearing it up as pre-teens. I had visions of gliding around like we used to, but I can assure you, once you’re over 40, there’s a very real fear of breaking something. So he got the job of pulling me around the rink as I tried to find my center the entire time, but resembled one of those roly-poly toys that you think is surely going to tip over this time, but manages to make it back upright. I thanked the universe that an injury wasn’t coming home with me, and we headed for lunch on terra firma.

The following morning afforded me a quick stroll to Green Park, to say hello to the Royals, because it’s the least they’d expect from an ex-pat, and it’s also near our wedding venue, where ten years ago we’d made our vows. I would never have guessed that I’d have lived for six of those in another country when we committed to support and love one another through all that life would throw at us. Never a truer word has been said on the subject of marriage and motherhood than ‘the days are long, and the years are short.’ I often proclaim on our anniversary that I feel like we’re just getting started, which conjures a horrifying look on my husband’s face.

If you’ve made it this far, thank you for indulging this holiday narration and contemplation. I had no idea how life-changing this trip would be, how the power of solo travel surprised me, how friends and family are so generous with their time and love, and how fields, and wonky pavements, and narrow streets and hedgerows can make your heart sing. The beauty of home, felt in often inexplicable waves of familiarity, that you appreciate in abundance, is truly good for the soul.

I am excited to be dedicating more time to writing this summer, as today is my last day at the Myhre Syndrome Foundation. You can be sure there is a reflection or three coming about that! Until then, thank you for being here x

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Nope, that’s an installation. Eyes were rolled, a mild expletive uttered, and art discourse triumphed again. For such quiet places, there is always something to say at a gallery.

The birthday celebrations involved our group convening at Fortnum & Mason’s Jubilee Tea Room, further affirming the movie-like status this trip evoked. The lift doors opened, and into the arms of family and friends I went, with full force and no embarrassment at lingering that little bit longer. No one pulled away from the standard polite squeeze: hugs, 18 months in the making. Decadent sandwiches, gallons of loose-leaf tea in bone china teapots, and sweet treats that made you call everyone’s attention to them were relished for over three hours.

I seat-hopped like a conscientious bride at her wedding, all of us reveling in the attention we could give one another without distractions from school pick-ups, children wanting snacks, or bickering siblings. The liberation of delving deeper into our collective updates meant our table bubbled with excitement - a group of mums who felt like they were playing hooky from school, or in our case, from jobs, children, and motherhood.

Traveling to the UK as a family means we stay for at least three weeks, but each day is heavily timetabled and structured to fit in as many people as possible, and ensure the children have some fun along the way. It’s not ideal for relaxation and being in the moment, but equally, I don’t want to miss out on seeing our lovely friends and family.

During these visits, you get snatches of time with your closest friends, you almost get to that ‘are you really okay’ question, and you are almost ready to reply honestly. I vividly remember having breakfast at the Ned hotel with two lifelong friends in 2022, the final meal before we said goodbye, having had our 36 hours together, and only then did the vulnerability show up. Wiping away tears over cute tumblers of yoghurt, homemade compote, and granola was not the ideal time, and very confusing to our server. Soon, I was returning to my brood, knowing my friends and I had so much more to share and support one another with, but not this time.

However, on this trip, it appeared there was a metamorphosis at 30,000ft as we crossed the Atlantic, akin to the Severance lift, where your life is compartmentalized. While I, of course, missed my children and husband, having six days just for me meant embracing being alone, despite the lurking anxiety. I was not on call, not looking at my watch, wondering who needs picking up soon, which club is tonight, and what is for dinner?

My NED friends, or shall we poetically call ourselves the ‘Breakfast Tears Club’, were staying overnight in London too. Full of tea and friendship, we headed out into the bustling Christmas shopping-packed streets and found a cozy hotel bar to continue the birthday celebrations. For the rest of the evening, we got into the hard questions and gave each other the space to answer. We’ve all experienced a lot, and it’s often hard to lean into our emotional truth when it is much easier to brush it aside and keep it buttoned up. Amongst the profound and soul-searching observations, we also delved into Hollywood gossip and reality TV, and our heads regularly rolled back with laughter.

On this night, there was a little magic. A cathartic, beautiful, exposing, and vulnerable dialogue that was often as challenging as it was enlightening. I’ve never spent a birthday crying as much as I did that day, but it was needed, and I think it put an emotional full stop on some of the questions my friends had gently been encouraging me to answer since we left and since we got the diagnosis. In fact, it’s more of a semicolon; I’m not sure there is ever a full stop when it comes to the ever-evolving emotions that ebb and flow as we move forward through life.

That sprinkle of magic was showing up as a friend, daughter, sister-in-law, and 40-something woman. Amidst everyone else we need to be, it was glorious to prioritize this time with these women, who do nothing but energize me. It was a timely reminder that these autonomous relationships bring balance to every relationship. Feeling the abundance of support through friendship helps me support others, leaning into being a daughter makes me a more intuitive mother, and remembering who I was before life got pretty complex makes me a better partner.

London was not disappointing, and we were only on day two…

Next time: Part 3 - City. Bus.Village.Wedding.

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As I sat on the train, it stop-starting its way into San Francisco, I knew the next minutes and days would be an exercise in remaining calm. Finding the chinks of rationality amongst what can feel like waves of endless unease.

It can be hard to articulate the feeling in your body, but I liken it to the same lightning-fast reaction when the hairs on the back of your arms stand up. A current passing through you that tips your focus into a spiral of thoughts that say ‘you’re not ok’ and that there is a perception of danger. That you’re about to lose control.

This was the first hour of my solo holiday.

But I’d prepared myself. Where I’d once priority packed a novel, magazine, and treats, I’d packed my Sensate (a device placed on your chest that combines sound and vibration to calm your vagus nerve) and a handful of my favorite crystals (Smokey Quartz and Dalmatian Jasper). This kind of healing isn’t universally adopted, maybe a little woo-woo to some, but I liken it to how, as children, we clutch our favorite bunny or blanket for tactile reassurance; these stones comfort me.

The holiday was a total luxury, from how I traveled (courtesy of the vast number of air miles my husband had collected; thank you) to the time I gave myself. And that, in itself, is a gift that I find hard to receive. Time to reflect, time to talk, and time to process are all very challenging. The busyness of life is a place to hide; despite years of therapy, it’s the Achilles heel of so many of us.

When we stop. When we’re alone. When we sit in silence. We must listen.

Generalized anxiety disorder is the term on the doctor’s note, and as medical descriptions go, it’s pretty darn accurate. Generally, anxiety is my natural state, the place I call home. I have anxiety about many and often all things, and despite what they tell you on self-help memes, a hot bath and a candle don't cut it in breaking the cycle.

I'll get onto the trip; there’s so much to say! Yet it’s interesting to reflect on the start of this trip and how, for someone who struggles with anxiety, to discuss the misconception that getting away from it all is a tonic. It’s, in fact, bloody hard work. Management of mental health for me is active and ongoing. “Why go then?” I hear the cry from the back. “A holiday? Without kids? Yep, sounds awful.” Despite the anxiety, it was a very special trip centered around a very special friend who was getting married, and it just so happened to be my birthday week too! All reasons to get on the plane.

Right, let’s get this movie-style week started. What better place than the first-class lounge, where I was greeted with champagne and a very cool bunch of entrepreneurs? Yes, let’s start there.

I was sitting between two lovely women, and my head was moving like an umpire, swiveling as I got to delve into their lives. I could have had popcorn and a visitor’s badge. The conversation was peppered with their observations, from the charity galas to the houses in Malibu, and the plane ticket they had booked “just last week “ for a weekend in London. They were genuinely unpretentious people, I will add, where first-class is the standard, and is achieved through tremendous success in their careers.

When anyone asks about my job, they soon learn about my rare life too, and it tends to open a level of sharing that perhaps would be otherwise unsaid, but amongst the decadence of their lives were the familiar stories of cancer, children struggling, and parents aging.

Our little gang of eight was soon alerted that it was time to board, and off I swept with my new friends, following as they marched straight to the front of the lounge, weaving through the business class queue, (I am sure I was apologising as I went), and flashed our status of row 1 or 2. Down a special boarding tunnel we went and into the first-class cabin. The crew's level of attentiveness is out of this world. They are masters at the right level of engagement. Happy to chat, but also give you space. Magically appearing with snacks, drinks, and pajamas - side note…this is how my kids must feel daily. Unbeknownst to me, one of my entrepreneurial friends told the crew to keep my glass topped up because I deserved a special trip. Everyone was so kind.

A flying hotel is how I’d describe the flight, with a butler on hand. Would it ever justify the full-price ticket in my eyes…not a chance, but I was paying less than an economy ticket in real life, plus the hundreds of hours of my husband’s time crossing the planet over the last 20 years in economy (now seems like another time to say thank you). And I think if you travel in first class as standard, your bank account is such that ‘justification’ isn’t a question at all.

In my little cabin (you get doors), I slept a little but mostly just lay in bed (yes, a bed) that was complete with sheets, pillows, blankets, and watched movies, taking in the experience that would only happen again on my return. As we landed, a crew member walked past with a new bottle of champagne and said, “For the bag madam?” slipping it into my hand luggage with a wink.

I got on the London Underground, the beautiful, bone-rattling train where you are encouraged to mind your own and hang on tight. I had booked a hotel near my old office, a very familiar place where I felt at home and safe. Westminster was the nearest tube stop, and I emerged into the first gulp of fresh air after leaving San Francisco and was hit with the utter spectacle of Big Ben, a pavement bustling and full of grumpy commuters and red buses crisscrossing my view. Home. Beautiful, glorious home. My holiday romance with London had begun.

I’d had the foresight to ensure that the calming devices could step aside as soon as I landed because meeting me at the hotel was the epitome of the safest place—my mum, where everything is always ok, even when it’s not.

We headed out for dinner, walking past the pub I used to visit after work in 2012, a bar where we had a Christmas party in 2013, and the office where we had so much fun. If we’d had an HR team, they would have said too much fun. Every step was a memory recall, and I hadn’t anticipated just how comforting that would be, or how much revisiting a place where I had once existed would impact me. The person before motherhood, before emigrating, before a life-changing diagnosis for our family, before the separation of the pandemic.

Did that person still exist, or just need to be found?

Next time: Fortnum’s, Friends, Family.

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Although I had my work hat on, I am not a robot, so did experience the conference as a member of the community emotionally. I wasn’t sure if I’d be biting back tears, meeting other Myhre families, and giving real-life hugs to personal connections that are years deep or how I’d react to the spectrum of symptoms. It gave me a much deeper understanding, and I won’t lie, a healthy dose of reality. Of their situation and mine. I remember being in the downstairs foyer, setting up the registration table, and seeing our co-founder and his family and their little girl, who is a similar age to my son, who also has Myhre. The entire family was an energy force. Fun and enthusiastic, and their children dived right into the conversation about where I was from and why I sounded funny with my quirky accent. This energy was around all weekend, but also moments of held breath, when the emotion would catch in our throats, and when the reality didn’t need to be said out loud, and there was space to acknowledge the challenges these children, adults, and their families face each day. Myhre is a progressive condition, and that weekend offered a window into the future.

The future is an anxiety-inducing entity for most parents, particularly when our children grow older and, rightly so, take steps toward independence. Still, it is something hard not to dwell on when your child has a life-threatening condition and has challenges that you know will make them vulnerable as they get older.

I’d not heard the term ‘borrowing grief from the future’ until recently, and I think if you cut me in two, like a piece of rock from the seaside, it would have this statement running through me. The nail has been hit on the head. There I am. I feel seen.

Which is a segue into the other learning from this summer. I’ll call it our ‘San Fran bubble’. I’ll set the scene if you need that quick reminder. You move to another country, leave everyone behind, start making a life, stay inside for nearly 18 months, and start making a life again with new friends at an age where your friendship bus back home was pretty full. You’re now on the side of the road, waving down other buses, seeing if there is room for you. Well, all of that means that your immediate little family of four is your unit. Our family in America begins and ends with us. So, when your wider family comes to this little unit, this bubble, it brings things back into a sharper focus on so many levels.

It’s acknowledging that the children you left behind are now young adults. You’re missing out on so much of their lives, and they’re missing watching your babies grow, too. Naturally, they’ll also see, and we’ll talk about the realities of Myhre. With every hello, there will always be another goodbye, and months, maybe years, will go by before we get more time. Our children also share our tears when people they love leave and the guilt that comes with that. There’s a strange mix of wanting to enjoy every single second but also being faced with the reality of what you’re missing. For the first couple of days of each visit, I can emotionally take a step back, and it wasn’t until I unpacked this during a conversation with my husband that I had any idea that all of this was being contemplated. It’s been a summer of incredible memories with so many wonderful people that we’re thankful to for putting us at the top of their summer destination list, but when ‘home’ comes to visit, I understand my feelings a little more now.

And where this all circles back to is that beautifully simple yet ongoing pursuit of being present and not thinking forward or backward. My mum just left last week, our final visitor of 2024, and she, along with a few others, hears the stream of consciousness that runs through my mind out loud. Her summary was, ‘Wow, I don’t know how you even think about this many things or scenarios; I can’t keep up.’

She’s not wrong—it's time for this chatty part of my brain to take the rest of the year off. The numbers have been run; we’ve scenario planned for it ALL, plus extras. Down tools. We’ve got this.

Right here, right now.
That’s it.
That’s all there ever is.

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In this spirit of using the internet for good, there was a panel on caregiving where a new device was presented that supports seniors living with social isolation. I should add that almost every panel talked about Artificial Intelligence (AI), and I think this technology warrants an article of its own. This new product, or to be more accurate, the new speaker on the panel was called ElliQ. An AI-powered companion designed to ‘support and accompany older adults on the journey to age independently while reducing loneliness and isolation.’  The difference between this technology versus shouting ‘Alexa’ into your speaker (that half the time isn’t listening) is vast. Its capabilities are impressive and intriguing, with ElliQ becoming the friendly voice in your home when you live alone or feel alone. It can remind you to take your medication, the one who will alert your loved ones if you’re unresponsive, and those are just the practical applications. It’ll also play quizzes with you, talk about the places you’ve vacationed to, or give you a tour of a country you’ve not visited. It’ll even send a selfie to your grandchildren and encourage more interaction with the generations already in this ‘social’ space.

It's pitched at seniors, yet a colleague and I turned to one another after the panel and could see how this technology could be so effective for remote workers, who often spend large parts of the day alone. These technologies aren’t designed to be a substitution for real-life interaction, but they allow for connection and peace of mind for their children, who can’t always be there all the time. I think it's wise to position these as an aid or support rather than a replacement for human interaction. Still, we all know that even if we can assist with taking a senior to a community class or out shopping, there can be large stretches of the day without company. As our parents live longer and our children leave home later, the generation that falls into multiple caregiving roles is under increasing burden.

There are certainly guardrails that need to be applied with AI, and you’ll find as much caution as you will optimism from all the panels at the conference, but I think it serves us well to all remain curious about the potential. Like all things, finding the right balance is key because the internet is our hero and villain. It can be helpful and harmful. But if there is a role that technology can play in combatting the harm that loneliness can create in our nervous system, then I am ready to embrace how wellness and tech converge in the coming years. I think we can all agree that the dangers of smoking and excessive alcohol use are well known, but loneliness, anxiety, depression, these internal struggles often remain unspoken. We must pay attention to how they affect our bodies physically and ensure we have steps to counter the harm they can do.

That will, of course, look different for each person, but in terms of tech adoption, well, I can tell you there is no sweeter moment when I get to tell my parents to ‘get off your phone’ as they’re chuckling at another funny video sent from one of the many WhatsApp groups they belong to…😊

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The most poignant appointment was rheumatology – the discipline that treats inflammation in the bones, muscles, joints, and internal organs. It was the first time this specialist had seen us, but we had suspected something was happening, particularly in his knees. They are big and not in proportion to his legs, which are small and thin. Schools of thought are that the tight muscles have pulled apart the structure or there is an anatomical malformation or inflammation. Perhaps slight indications of all three. He doesn’t complain too much of leg pain, but it comes and goes. Confirmation came that his ankles and knees were inflamed.

We asked, “What did that mean?”
He said, “That he’s likely in pain.”

At that point, the physical pain also becomes mine. To know that his body hurts and has probably hurt all his life is hard to fathom. Long-term pain medication is in his future, but for now, we’ll monitor and see how we can help him via his diet and exercises that don’t exacerbate it.

Similar news was reported at our physical therapy appointment. Upper body and neck rotation are restricted, which we’ll work to improve with regular physical therapy sessions. We let the physical therapy team know that he didn’t seem keen when we were trying to encourage pedal pushing on his bike and that we’re still at the balance bike stage.

She said, “That position for his legs will be hurting.”
My stomach lurches again and lands in my shoes.
She continued, “If it’s important for him to ride a bike, then we must build up to it.”

I try not to make comparisons on our journey to those of others. Still, I know families deal with way more than us, wishing bike riding was even a consideration. It’s healthy to have an awareness of the gratitude I have for our position, yet there is agony in the truth that our little boy feels pain and will live with chronic pain for the rest of his life.  

But we move.
We move forward.
We move those stiff and sore muscles.
We move with gratitude and with appreciation for what we have today.

We don’t need to return to the clinic for at least two years; our local care teams are well-equipped to monitor and treat his symptoms. Not only did Boston clarify our son’s health, but as we tried to open the cab doors against the gales while rushing to get out of the snow showers, it wasn't long before we decided that California was the place to stay. Heading east can be tempting for cheaper housing and cost of living, but we’ve been spoilt. We’re paying for the sunshine, and it appears happy to do so. And that decision, in and of itself, is also another great milestone.

Until next time x

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Being in front of the cardiology team, who will perform their own echocardiogram, is the most nerve-racking time. When the clinic has seen over 50 patients, compared to our local team, which has only seen our son, you can imagine the analysis of his results comes with a specific level of Myhre scrutiny. Progression is one of the most challenging aspects of Myhre. Is the next appointment the one where the scales are tipped into a new reality?

Amongst it all, we have planned trips to the museum, aquarium, and Legoland Discovery, packing our four days away with as much fun as possible between the clinic visits. It crosses my mind that this isn’t the archetypal holiday our eldest son might compare with his friends, who, on spring break, are also traveling. Yet it’s our reality, and we will snatch moments of normality in the appointment schedule of the nine specialists we’re seeing this time.

We’re so grateful to live in the same country as the clinic because visiting internationally is nearly impossible because of the cost. But make no mistake—the costs for rare disease families are significant and run into the thousands, accounting for the associated medical bills, travel, hotel, and food. We’re grateful that we can make the trip, but it’s also important to be honest about the costs to rare families who must seek specialists wherever they reside; in our case, that’s 3000 miles away.

Amongst the tummy turns is excitement about visiting Boston again, where the red rusty colored bricks on the historical buildings remind me of a European city. There are narrow sidewalks and tall buildings with wonky windows, leaning on one another through the centuries they’ve been standing. Narrow cobblestone alleyways are undulating and draw your attention further, asking you to explore. The window boxes might not yet burst with spring blooms as we’ll see an almost 20-degree temperature difference, but that fits with the home-from-home feeling that Boston evokes.

One thing I know is that children do not let you sit in any emotion for long. Whatever updates Boston brings, the fun and activities will be the perfect antidote to any fears or concerns that stepping into the clinic will evoke. And as the saying goes, food is good for the soul, so Boston baked beans, lobster roll, and cannoli, here I come!

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You turn your face to the light on spring days and bask in appreciation. Spring is excitement, prospect, and anticipation because before too long, those sunny days become constant, and we grow used to its presence. It can feel like the year begins right now as nature wakes up and displays the hard work it's been doing, dormant and in preparation.

It is an awakening—to be attentive, aware, and mindful. The opposing forces of awakening and dormancy, a sleep-like state, have been on my mind recently.

I dream a lot. They're ridiculous and epic and often film-like. But there is a niggling constant that visits me at least once a week and has done for the last few years. It has to do with water and my son, Josh. It is the threat of danger. He is near the edge, and I can't get to him quick enough as he falls in. There is never the tragedy of an ending; I wake up before that happens, but this situation has presented itself in many forms. A lake, the sea, our local pool, friend’s pools - the list goes on.

The interpretation of recurring dreams is associated with stress, trauma, anxiety, and the need for there to be a form of psychological processing. I think there is a straightforward connection to my role as his mother in the journey he faces, and that while I can do many things, I can't change his diagnosis, and in dream form, this presents that vulnerability. That I can't save him.

Last week, my dream presented a scene: We were with friends and by a lake. I was almost looking down from a cliff at the view, again seemingly too far away, and could see he was near the edge. But our friends were there, too, beside him. As I got closer, I saw our friends in the water with him and having fun.

And Josh, well, he was swimming—all on his own and laughing and alive with his usual joy.

I cannot tell you how profound that dream was or how I felt when I woke. There was no panic, and my heart wasn't racing. Instead, there was peace. As I began to process this new ending, I found its message. He would grow, learn, and succeed on this journey—and so would I.

When we think of spring and see the new shoots, they can often symbolize new beginnings, the chance to start again. However, they also remind me of the work that's been happening during those dormant months, when to survive, there is retreat. That work has been ongoing in the dark depths when sunlight and growth can feel far out of reach. The joy we feel when we look around at the blooms and buds is only achieved by surviving those dark days and cold nights. So spring is a celebration of the continuation, not the beginning. And in that way, don't we all have periods of dormancy and winter that can often last longer than nature's schedule?

It feels fitting that as I surround myself with the physical growth of the cherry tree blossom and as the new green shoots emerge from the ground, I have also had a breakthrough in my dormant state.

There is possibly no better time to dream than in springtime, as we close our eyes and find the warmth in our sky, wondering about the possibilities ahead.
But there is also the acknowledgment that when others see the beauty of our growth, our very own blossom, there has been another season that can be quiet, often hidden, as we wait to find a time when the light feels like a safe space to move towards.

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