Monthly Archives: August 2018

Generosity

The generosity we’ve been shown has astonished us. I think it’s something to do with our characters and backgrounds – we both feel like you have to earn things, that you can’t just ask for things or be offered things. ‘Just asking’ or accepting feels incredibly rude and presumptuous. We’ve talked about this a lot over the years. We were astonished when people were so generous when we got married, for instance. Now that our child is ill…

I used to give a talk at postgraduate open days about how to fund your Masters or PhD, and the thing I put most emphasis on was how to leverage charities, trusts, foundations etc that have educational missions, that there are literally organisations out there who want to make society better through encouraging education, big and small, who will give you a grant to help you learn and study. So why am I surprised / taken aback at the charities that exist to make your family life better when your child has cancer / a cancer-like disease? I shouldn’t be. I know how it works. A friend of Em’s has just finished a stint as head of philanthropy for Cancer Research, ffs! But still.

Even more than that, though, is the generosity we’ve been shown by friends, neighbours, and colleagues. Actually let’s just call them all friends now. From people baking us bread or supplying us with frozen meals to make all the toing and froing between here and Bristol easier, to people coming round with souvlaki from the local Greek restaurant, to people walking up the hill and gardening for us while we were away (and when it was so sunny and the garden was going mental), beer deliveries late in the evening, Blu-Rays of films lent to distract me, to the people who text me shit jokes, or email stories about how badly behaved their kids are being, or send me photos of interesting things they’ve seen around town that might just take my mind of it for a split second, or post empty toilet rolls through the door so Nora can make a marble run like Topsy & Tim did, or who just text to say they’re thinking of us and wishing us well. It all has a positive effect.

Beyond that there have been offers of record club meetings, board games, dinners, and bike rides to fit around our needs and timings, and even though they’ve not happened yet because we can’t really plan anything at the moment, just the offers mean a lot. Even if we can’t accept right now, please do keep offering. We will accept, and they will happen, eventually.

And then there are the internet acquaintances, the people from groups we belong to (I say ‘we’ but I really mean Em) who we’ve never met, but who turned up at Bristol Royal Children’s Hospital with bags of toys, or who gave us a baby carrier on the understanding that we’d pass it on to someone else in need when we were done with it, or the entire forum who clubbed together and made up a care package of stuff – toys for the kids, gift vouchers, chocolates and a substantial cash collection (so substantial it freaked us out) for us – plus every little message of support sent by whichever channel or platform online; people I’ve no connection with at all stumbling on my Instagram feed and commenting / messaging.

I don’t know that I’ve been very good at this kind of thing in the past for other people.

I haven’t even mentioned the healthcare professionals.

What’s the motivation behind people, particularly strangers, helping out in situations like this? Love, altruism, a sense of social good, and just being a decent human being? The little rush of good feeling you get from helping someone in a tough situation out is an important part, too – Nora and I baked a cake the other day for someone going through a similarly shitty time; the cake and thought made them feel a bit better, and the activity, distraction, and sense of doing something good made us feel better. Mutual feeling betterness is good. (Well it made me feel better; I think Nora was faintly irritated at not getting to eat any of the cake.) There’s a little spiritual insurance going on too I’m sure, especially amongst strangers; there but for the grace of god, etc etc. And that’s fine.

In fact, a lot is fine. It’s fine to not know what to say or do, and to just click ‘like’ on a Facebook or Instagram post in lieu of doing anything else. It’s fine to be faintly irritated at me for not replying in a timely fashion, or sometimes at all, but it’s also fine for me to not reply in a timely fashion or sometimes at all, because, you know, a lot going on. It’s fine to pray for us, even though we’re god-denying heathens. I don’t believe in an interventionist god but I do believe in love, and at their best I think the two are the same. It’s even fine to avoid engaging at all with what’s happening to us, because it’s horrible and who wants to engage with horrible things? Just please don’t all do that. (It’s also fine for us to be occasionally pissed at you for not engaging at all.)

I put this on Facebook back at the start of this ‘journey’, and I’m going to put it here again because it might be useful:

A year or more ago a friend – I forget who sadly – was in crisis and posted a link to something very useful about how to offer support. I can’t remember the exact article but these are similar.

https://m.huffpost.com/us/entry/520108?guccounter
http://michelecushatt.com/2016/05/17/60-creative-ways-to-help-a-friend-in-crisis/
https://goodlifezen.com/21-ways-to-comfort-a-friend-in-crisis/

Today

After various transfusions and intravenous pushes and nappy-measuring, Casper is much improved this evening; when he;s feeling well he makes a noise that I can only compare to a velociraptor from Jurassic Park, and he made that noise for the first time in a few days at about 6pm. Which is great. If he’s still improving in the morning he might even be able to come home. I feel on a little high.

Which is maybe not great? Because this is still a rollercoaster. There will be other shitty days to come. In order to deal with this situation psychologically and emotionally we’re trying to focus on living in the right now, and not to trade in ‘what ifs’. That means positive ‘what ifs’ as well as negative ones, so when you have a bad day (or three, or four) you are right in that bad day and it is difficult to see past it, because you’ve been training your brain to not think about the future.

But right now I feel like I’m getting my boy back, if only for a little while before the next trough.

Washing

The washing’s been hanging up outside for about 36 hours now. It keeps raining just as I’m thinking it must be dry now. That feels like a crap metaphor for where we are.

Casper’s been as poorly yesterday and today as he’s been through this whole saga. He’s had a blood transfusion, but he’s still listless and moany. He’s nil by mouth to try and rest his gut, but he’s desperate for milk, for the comfort of breastfeeding. Em’s desperate to feed him.

Last night Helen delivered three bottles of beer to my door at 10pm because I posted that I fancied one. I watched a film that Jake had lent me. I’ll drink another gifted beer and watch another borrowed film tonight. Little moments like that make things a bit better. Thank you.

Little moments. There are very strange moments of elation and joy amidst this, moments that puncture the shit. This afternoon in the park Nora pushed herself off on her bike for the first time (and the second, and the third) and I whooped so loud with pride that I startled a guide dog in training. Tired and emotional (no nap), Nora denied point-blank that she’d done it in the car 5 minutes later, despite me being 20 feet away and having a witness to testify that she’d managed it. Then tonight she said “Night night Casper, I love you and want you to be healthy and blue and messy” while we were FaceTiming Em before bed. It makes your heart burst. I cried a little bit, and tried to explain that it was a happysad cry; sad that we needed to want Casper to be healthy at all, and happy that she was a kind and loving person. “Girls are not persons” she replied.

Em was microwaving a meal I’d taken her for tonight (catering at the RD&E is NOT like it was at Bristol, especially no the oncology ward) in the parents’ kitchen when another mum asked her why she was in (ie “what’s wrong with your child”). Em made her cry by telling her that our 6 month old has cancer. What are you supposed to say?

This is the toughest it’s been. We knew there would be ups and downs. That treatment, that getting well, would be a rollercoaster. A few days ago I was thinking- no, hoping, but in the present tense, rather than for the future, that this was going to be… not easy, but not that bad. That’s my default position. Not assuming that good things will happen, but that bad things won’t. I think I’ve said that here before. A bad thing is happening.

The washing is still out. Maybe it’ll dry overnight.

On kids (with or without cancer) changing your life

Warning: this post contains me complaining about my lot.

Not gonna pussyfoot around this; at the moment, when social media acquaintances with kids make a post moaning that their kid is hard work because they won’t eat a family meal / go to bed / stop crying about a toddler slight, or complain that being a parent has stopped them being able to read books / go to the cinema / ride bikes / get pissed, I want to shout at them to shut the fuck up and fuck off forever. “AT LEAST YOUR KID DOESN’T HAVE CANCER-NOT-CANCER, EH” I want to comment on every whinging photo.

Sometimes. Not all the time. Mostly I recognise that having kids is difficult and time consuming and frustrating and emotionally draining whether they’re perfectly healthy or not. We all recognise this going into parenthood, even if we don’t empirically ‘know’ what the actual fallout on our lives will be. How psychologically tired we’ll be. All the time.

This is another moany part. Here’s my fallout.

Prior to kids I cycled about 3,500 miles a year, played football 2-3 times week, took part in two regular record clubs, one regular board game club, maintained this blog, wrote for other websites (and occasionally even print) about music, knew who the players in the England squad were, baked regularly, occasionally went to the cinema with my wife, etc etc etc. Oh, and listened to loads of music.

These days my hobbies are rebooting the wifi, loading and unloading the dishwasher, playing Pokémon Go while I walk to work, and sitting down quietly for an hour before I go to bed. Oh, and administering a long list of medications to my baby who has cancer-not-cancer.

I’m a pretty hands-on dad. I change nappies, I bath the kids, I cook every meal they eat, I wear them and walk them to sleep, I put Nora to bed. That’s been a conscious and deliberate decision. I’ve got a good job but I’ve avoided the kind of careerism that means I need to spend crazy hours in the office. I get home in time to cook tea for the family every day. But I still get a frizz of pissedoffness when I see other dads appearing to have their cake and eat it; rolling in pissed, travelling all over the country for work, cycling as much as they did pre-kids. Add in the illness, and…

When I started writing this post Casper was fine; he’d been well and cheerful for 12 days in a row pretty much, and I was feeling a bit indulgent, guilty even, writing it at all. But yesterday he vomited a couple of times, and vomiting fits are what’s brought us to hospital for many multi-night stays over the last few weeks. This morning he vomited again, didn’t take on any milk, wouldn’t tolerate his meds, and was very much not his regular, cheerful, smiley self. We were due in for chemo today anyway; now Em and Casper will be staying overnight again. He’s had various meds intravenously, a little sleep, and has perked up considerably – enough to smile at his new nurse. So I’m writing these final paragraphs in hospital, and he’s just vomited again; acrid yellow bile because there’s nothing real in his stomach.

These blips – and they do seem like blips at the moment – are to be expected; our child has cancer-not-cancer, and is undergoing mild chemo and relatively aggressive steroids for treatment. Plus he’s a baby, and babies are rollercoaster rides at the best of times, even when they’re not ill. It’s hard to tell what’s his disease, what’s his treatment, and what’s the fact that he’s just a baby.

It’s these blips when I’d say “no” if someone asked if I was OK, or coping. Em and I have both cried and shouted at each other today, as anxiety manifests as anger. I cried while I held Casper as he vomited again in the paediatric oncology unit, as the consultant looked at him with concern in her eyes and commented how he wasn’t his usual cheerful self, and that she’d need to keep him in overnight to make him better. And she will make him better, because the doctors and nurses here are amazing, and even with this stupid rare ‘hipster cancer’ that only 50 people a year are diagnosed with and that no one really knows much about, they know what they’re doing.

You think everything is OK, considering. You wonder what all the fuss is about, the social worker visits and the charity support and the gifts and the concern and the disability living allowance applications. And then you end up in hospital with your baby again and you remember. This is what it’s about. My baby essentially has cancer. We’re going to be doing this again and again over the coming months and maybe years.

My baby has cancer. What are you whinging about? It’s OK. Our suffering doesn’t invalidate anyone else’s. Far from it. You’re allowed to whinge. Just be aware that every so often I might curse you for it.

Coping

“How is Casper coping?”
“How are you coping?”
“Are you coping?”
“You seem to be coping”
“I don’t think I could cope”
“I hope you are coping”
“We’re just about coping”
“I’m not coping very well”
“I can’t cope”

These are all things that are said to or by people in our situation often, I imagine; I know I’ve heard all of these or variations thereof over the last few weeks, some of them from my own mouth.

What is “not coping”, is the question? Not coping, when it’s your child – your baby – who is ill, isn’t an option I can countenance, or even really comprehend. Could you run away? Abandon your baby? Abandon your ‘well’ child? Abandon your spouse and leave them to cope alone?

I am lucky to be unable to comprehend what not coping in this context would be, I suppose. We have all sorts of support and resilience on our side. I hope no one goes through what we’re going through and really cannot cope. But I am sure that families, marriages, and mental states have broken down in similar circumstances.

In many ways, what we’re coping with isn’t as bad as what some people are coping with. When you spend a lot of time in hospitals – paediatric wards, oncology wards, acute wards – you see suffering that is invisible most of the time in the outside world.

Most people – I hesitate to say ‘all’ but I’m tempted – cope with at least something most of the time. Maybe not their child having cancer-not-cancer, but other things. Things that you need to cope with for your entire life, things that you did not choose to live with but have to live with nonetheless. Arthritis. Diabetes. Alcoholism. Depression. Asthma. Ruined knees. Anxiety. Spinal injuries. Bipolar. High blood pressure. Eczema. Epilepsy. Allergies. Crohn’s. Alzheimer’s. Cystic Fibrosis. Patriarchy. Late period consumer capitalism. Brexit. The rise of popular fascism. I am not being facetious with anything in this list.

“You can cope”
“You are coping”
“You’re coping amazingly”

Our first Saturday night at home together in seven weeks…

It’s after 10pm now so I think I’m safe to type and then publish this; tonight has been / will be our first Saturday night at home together as a family in seven weeks.

This is how the last few weekends have panned out:

• Saturday 1 – Em and Casper in a French hospital
• Saturday 2 – all of us at Frank’s parents’ house in France
• Saturday 3 – Em and Casper at the Royal Devon & Exeter Hospital
• Saturday 4 – Em and Casper at Bristol Royal Children’s Hospital
• Saturday 5 – all of us at the CLIC Sargent House, Bristol
• Saturday 6 – Em and Casper at the Royal Devon & Exeter Hospital
• Saturday 7 – all of us at home

Time stretches and compresses in a situation like this. What’s that monologue in Withnail & I about drugs being like transatlantic flights? I feel slightly jetlagged a lot. Em must feel horrifically jetlagged constantly.

It doesn’t help that Casper has been in full-on ‘roid rage; not sleeping, grumpy, mood swings. All because of the steroids. Blissfully he’s been happy and smiley pretty much all day today; it’s been like having my boy back.

Speaking of what he’s on, this is Casper’s list of meds:
• Ondansetron twice daily
• Ranitidine twice daily
• Abidec once daily
• Prednisolone three times daily
• Co-Trimoxazole twice daily just at weekends
• Vinblastine once a week

Some more thoughts about this situation we’re in:

• Since this started I’ve mainly listened to Aphex Twin; not the ambient stuff, not the acid stuff – all of it. From 85 to 2015 (I’ve not got anything more recent, though I am excited for the new EP). What does this say about me? I’ve always found something comforting in much of his music, and the combination of that comfort and the disquiet that runs beneath it much of the time fits my emotional state. Plus I know much of his music inside-out, and familiarity is a good and pleasant thing right now.
• Our ‘journey to zero waste’ has taken a massive hit over the last few weeks; we are using a LOT of single-use medical grade plastics.
• Let’s compound that guilt with some extra guilt at taking supplies from the NHS – syringes, inko pads, sick bowls etc – because the NHS is under-resourced and over-stretched and surely there are other people more deserving than us.
• Oh that’s right, we are horribly deserving: our baby (BABY) has cancer-not-cancer
• Insert your own little rant about the NHS, private healthcare systems like the USA, Jacob Rees-Mogg etc etc here. If we were in America right now we would be bankrupt.
• On occasion I have referred to him as ‘cancer boy’, which is funny and brutal on about three levels (you can’t say that!) (it’s not actually cancer) (he might die) (he probably won’t, not for decades and decades and decades, just like everyone else). You’re not allowed to call him that. Only me.
• People often ask if there’s anything they can do. I stop short of saying “come and clean our house” because that seems crazy (we have a cleaner, and can apply for a grant to help pay for the cleaner while Casper’s having treatment, which is amazing, and another thing we’ve found out we’re entitled to from the CLIC social worker). Anyway, one of the nicest things that anyone’s done is bring us food, but what makes that even better is if they then stay and eat it with us, sit down at our table and be a part of our family for a little while.
• A side-effect of all those separated Saturdays (and Sundays, and Mondays, and Tuesdays, and and and and and…) is that we need to learn to be a family again (a couple again). At times it’s made a tense situation worse. Being parents stretches your relationship past places you thought would break it already, to then add this on top… it’s tough.
• What would we normally do on a Saturday? Can you just do that and give your child a load of drugs at the same time? Not if you’re in hospital. If you’re at home? Sort of; we kind of did today.
• While walking Casper round the park today an older lady walking her dog told me how gorgeous he was and asked how old he was. She said I must be very proud. “It’s a bit more complicated than that…” It wasn’t the response she was expecting, but what to do in that situation? Your baby is lovely: Thank you – he has cancer!
• When you see someone you know and they ask how you’re doing and you say “OK, considering” or synonyms thereof, because you wouldn’t have gone out and about and be in a situation where you can meet someone you know if you weren’t OK at that moment.
• Because the moments when you’re not OK come generally come at home when no one else is around.
• Sometimes those moments are quiet, solitary, tearful.
• But sometimes they’re not. Sometimes you’re venting your anger, anxiety, and fear at your family, the people you love most, the people going through this with you. Your wife; your husband. Your daughter. Your ill son.
• It’s in those moments that you most remember we’re living in a nightmare, because it is surprisingly easy to forget. Especially when you have a good day, like today has been.
• How to not neglect the other child? Em went running with her today, while Nora rode her bike, and I walked Casper in his buggy. Nora loved it. We can do that almost every day for the next couple of weeks. Assuming Em’s legs and lungs can cope.
• We’ve not managed an entirely hospital-free day; Casper did a massive shit which exploded out of his nappy and covered his torso, including his Hickman line, in baby poo. Off to hospital we go to get it cleaned and new plugs installed. Just 90 minutes though. It’s like he wanted to see the nurses. He loves nurses. They all call him gorgeous all the time.
• Apparently we’re on the ‘friends and family’ list at the ward now, meaning everyone knows us. Which is lovely, but not something I ever, ever wanted to be a part of.
• The Hickman line; it’s like the surgeons went in and just attached a toy to him.
• Every time he smiles I take a photo, just in case.
• Also because he’s gorgeous.

Stuff Casper has had done / administered to him over the last month or so

  • 2 blood transfusions
  • 2 general anaesthetics
  • 1 Hickman line
  • 2 skin biopsies
  • 1 bone marrow biopsy
  • 2 chemo treatments
  • Steroids
  • Anti sickness drugs
  • 1 MRI scan
  • 2 x rays
  • Ultrasounds
  • Antivirals
  • Antibiotics
  • Paracetamol
  • Omeprazol
  • 1 platelet transfusion
  • 1 albumin transfusion

This is the reality of life with cancer / a cancer-like illness. He’s 6 months old. And he’s still smiling.

 

Post chemo number two

Casper’s not reacted very well to Friday’s chemo and is back in hospital; not taken any milk on today and been vomiting bile a lot. Not taken any meds orally. Temperature slightly up. He had his second dose of chemo – his first as an outpatient at the RD&E – yesterday, so this is kind of to be expected, but as he didn’t really react to the first dose this is a little alarming and very unpleasant. For a week there I thought this would be a walk in the park… almost. So Em and Casper will be in hospital for another 36 hours until full bloods are back. Intravenous meds via his Hickman. Obs. The safety blanket of the ward. The nurses. The doctors.

Which all means that today might just have been the toughest so far: seeing him poorly, lethargic, vomiting, and unwell, after the best part of three weeks of him being, essentially, fine – his rash had almost vanished, he was happy, content, playful. It lulled me into a false sense of security. He will beat this, I am determined and confident and positive that he will, but it will be tough, and there will be many poorly days before it is beaten. But I’d been enjoying the good days we’ve been having.

I am blessed with a self-contained and resilient emotional / mental constitution. I live mentally very much in the present, with a little bit of the future, and I seldom dwell on the past or fantasise on what could be: I soak in what is, and try and make happen what I want to happen. It’s not that I assume good things will happen; it’s that I assume bad things won’t.

A bad thing is happening.

Facebook, 9 August 2018

(This post was originally published on Facebook a couple of days after we were discharged from Bristol Royal Children’s Hospital.)

We’re home.

Because Casper took his meds well over the weekend, his MRI and first bone marrow came back clear, his obs were very stable, and he isn’t presenting as being in any pain – in fact, he’s presenting as being a very happy, smiley baby, most of the time – we’ve been home since Monday teatime. Casper is now an outpatient at the RD&E rather than an inpatient at Bristol Royal Children’s Hospital.

“It must be a relief to be home,” says everyone.

Yes, but….

Hospital is a safety blanket. Medical professionals everywhere. Every meal taken care of. A very small physical environment to exist within. Constant support. Home is… terrible freedom. What if we get something wrong? We know we can call literally any time and get support. We know we’re 10 minutes drive from Exeter hospital. But those are facts for the reasoning part of the brain, not the emotional part.

More thoughts in a bulleted list, because it is my job to know how people consume content, and because this is how my brain is thinking right now.

• Cancer does not care who you are. On the paediatric oncology ward are all races, social and economic backgrounds, cultures, sexes, ages (within a range, obviously). Cancer does not give a fuck who you are or where you’re from. Sure, some cancers are related to lifestyle choices and social / environmental / cultural factors. But when you’re 11 years old, or 6 months old… cancer doesn’t give a fuck about that stuff. Cancer is arbitrary.
• CRUK estimate that half – that’s 50%, or 1 in 2 – the population will get cancer at some point in their lives. Half. https://www.cancerresearchuk.org/…/cance…/risk/lifetime-risk
• We’ve found a few people on the internet who’ve written about their children going through Langerhan’s Cell Histiocytosis. Many of them have relapsed. I’m assuming the ones who don’t, don’t write about it, because if there’s no relapse, there’s no trigger to update? You just get on with your lives, right? Remind me, in a year, and 5 years, and 10 years, if we’re lucky, to update people that we’re lucky. To let anyone else who goes through this know that you can be lucky.
• I am scared that sympathy fatigue may kick in. I hope it doesn’t. This is me trying to prevent that happening. If anything, now we’re home, we need more support. And all that support needs to be is popping round for a cup of tea, sending a message, having a conversation with us. It doesn’t need to be about sick children. It can be about anything.
• Sometimes you talk to somebody, fill them in on what’s happening, and you can see them getting emotional, choking up a bit, their eyes dampening. And your initial thought is “what are you getting emotional for, it’s OK”, and then your second thought is “yeah, this is fucking awful”.
• We can’t lose him. I’m pretty sure we won’t. But it’s going to be very tough going.
• Second chemo is tomorrow. The first at Exeter, the first as an outpatient.
• Today has been a tough day; our first at home with nothing to do. Tomorrow’s chemo was meant to be today but got postponed, so we were left with this weird stay-of-execution feeling. A friend came round for lunch. We went to Em’s parents for tea. I took Nora and Casper to Sainsburys, and to the park. I’ve probably felt at my lowest today; it’s been easy while I’ve been running around doing things. Pausing is tough. Especially when you can’t really pause, because there are three people and two cats in this house who I need to look after.
• We are going to own the fact that our baby boy has this disease that’s basically cancer. We have to own it. We don’t want to be the cancer family who people pity. We don’t want to be the cancer family who people admire for being brave or strong. Your family will almost certainly be that cancer family too at some point, I’m afraid. 1 in 2. 50%. Half of people. We just want to deal with it and get rid of it and carry on with our lives. If / when you go through it too, I will try and help you.
• Quite often it feels like we’re in a shit made-for-TV (or Netflix, in this day and age) film. A really slow and long and boring film. You want to stop it and put on something entertaining instead but you can’t change channel.
• Thank you, again, to everyone who has helped. For all the shit jokes, for the food, for the company, for the flowers, for the gardening, the haircut, the toys, the cat-sitting, the plant-watering, for everything. Keep it up. Please.
• But maybe no more toys. The house is full. Shivering Dave the crocodile has taken up the last available room.
• And maybe no more cake. At least not for me. I’ve not been bike riding properly in a long time. It’s having an effect.
• We love you.
• x

Facebook, 30 July 2018

(This post was originally published on Facebook a few days after the formal diagnosis of Langerhan’s Cell Histiocytosis.)

Some thoughts from the last week (trigger; cancer, illness, children)

• At times Em and I have both felt faintly fraudulent and undeserving: me when I was given the keys to a room we can use in the CLIC house; Em when she received loads of unsolicited gifts from people on a forum she uses (ie internet strangers, basically). I had to remind us both that we are sadly not fraudulent right now. I’d love it if we were undeserving. But we are literally living in every parent’s worst nightmare. It’s just a very drawn-out, boring, mundane nightmare most of the time.
• The hospital on that first day – last Saturday – were very careful not to use the word ‘cancer’. It was likely “an autoimmune disease” and “very treatable”. Then we were moved from the Paediatric Assessment Unit to the Children’s Ward and there was a social worker from a cancer charity there to greet us, and we went “oh, OK”.
• What Casper has – Langerhan’s Cell Histiocytosis – is not a cancer. But if you google “Langerhans” one of the first suggestions is “is Langerhans cell histiocytosis a cancer?”, and CLIC support it, and it needs chemo, so… basically cancer.
• My baby son could die. I’m pretty damn sure he’s not going to, and the odds are favourable so far, but that’s an enormous shitstorm of nasty potential future right there, that we have to deal with.
• We’re dealing with it quite well, so far. By asking for support, by seeking company, by trying to create a new normality that contains enough old normality that it’s not completely alien. It’s OK to go to a hipster café for lunch with him, it’s OK to have a glass of wine, or a piece of cake, or buy a CD, or a jacket, or laugh at a joke, or see some friends, because if it gives you pleasure and makes you happy, even for just a moment, then you’ll be stronger and more positive and better able to help your child get through this.
• Single parents deserve an enormous amount of respect; I’ve basically been single parenting Nora for a week and it is tough. Our routine has been out of whack as well, which I doubt has helped, but even so. Never, ever criticise a single parent.
• If I seem OK, it’s because Casper seems OK; his rash has improved a lot, and he is in good spirits; he’s not presenting as a poorly baby. He is cheerful and alert. I am very grateful for this.
• That said, I cried my eyes out on the motorway (it was quiet and I have cruise control; don’t worry) to What’s Goin’ On by Marvin Gaye. Even – nay, especially – “Save The Children”, which I always thought was trite bollocks before.
• After that finished I put all the Simon and Garfunkel songs on my phone on random. It picked “Bridge…” first. Wailing. One of my favourite songs ever.
• I also knew, full well, that “Save The Life Of My Child” was on there, and I listened anyway. Sometimes it’s good to dive as deep as you can go.
• That said, I’ve not listened to “Junior” by Scott 4, because… I’m not that masochistic.
• Thank you, massively, and from the bottom of our hearts, to everyone who’s reached out. People have jumped on trains, ploughed through traffic on the M5, turned up at the hospital, given us things, talked to us about mundane shit that’s reminded us that normal life exists (and we can be part of it, to an extent), sent cards and flowers and food, said they’d find a way to pay our mortgage if it came to that, even people we barely know, and it’s been amazing. It makes your heart ache. We love you.
• CLIC are amazing. Give them money. We’ve not asked them for anything; they found us and gave us things we didn’t even know we needed.
• The NHS are also amazing.
• Momentary guilt and stupidity for getting a vasectomy so soon after C was born. It passed, because that was always the (unwritten) plan. He’s gonna be OK. I’m sure of that.
• Trust your instinct, mothers. You know if your babies aren’t right.
• Keep sending us love. It’s not the English way to accept offers of help but I’m gonna damn well try to. Because, as well as things are going, relatively, right now, we’ll need more. This is the start of a long road, that could last years.
• People matter more than anything else.
• I love my boy and I will do anything for him. And my girl and my wife, too.
• And the cats.
• And you, now.
• x