I had fully expected to tell you in the (really-how-can-that-be?) 6th Good News Friday that my good news was that Mr Boo had been discharged from one of the gazillion clinics he attends and that I had got my work mojo back and was a model of professional efficiency. But none of that happened. Instead, I spent most of the week 1) getting mad about Collin Brewer (enough said by me about him this week on the blog and on Twitter, so I’ll spare you), 2) moved by the amazing blogs and tweets about International Kangaroo Care Awareness Day on Wednesday, 3) taking Mr Boo’s glasses out of his mouth, and 4) working until the middle of the night most nights to make up for time spent getting mad, moved and reuniting Mr Boo’s glasses with his ears when I should have been concentrating harder on the stuff that pays the bills. But there has been good news and this is the main one, for me: Mr Boo got his MMR immunisation. Now I know it might seem odd to be pleased that your child be turned into a pin cushion. But I cannot express the depth of relief and even pleasure I feel about this. For one thing, I’m just thrilled he could have it. By rights, Mr Boo should have had the injection at the beginning of April at 12 months corrected age. And being a ex-premature baby and a vulnerable one because of his ongoing health problems, this was even more important than it would have been had he been born well and at term. It was even more important still, though, because Mr Boo was put on high-dose steroids for his infantile spasms from late December until early February. (To give you an idea, he was on roughly twice the dose an adult with severe arthritis or chronic asthma might be given). This was good for the spasms but greatly compromised his already fragile immune system, as we can tell by the constant stream of nasty bugs he’s had since January (he was remarkably cough, cold, bug free before then). His epilepsy consultant told us when he was put on the steroids that if he came into contant with chicken pox, mumps or measles for three months (yes, three months) after he’d finished the steroid course, we had to get him admitted to hospital immediately. These childhood illnesses could kill him. No chicken pox parties for us then! But, and here’s another killer, the steroids that made him so vulnerable to these infections also meant he couldn’t receive any live vaccines. So, no MMR until 6 weeks after the date he should have received it. With the recent measles outbreak in the UK, I have been so worried that Mr Boo would come into contact with the infection before getting the jabs. I was worried that the ill-informed choices of others could lead to my baby’s death. I know that sounds harsh, but I am unapologetic. Babies should be vaccinated. It is not just for your own children that immunisations are important. We didn’t have a choice. My baby could have died. Getting Mr Boo vaccinated signalled the end (we hope, please, pretty please) of the steroid era and hopefully that he’s on the way to better health. My shoulders have rested half an inch lower since he had the injections. Good news, indeed. As always, if you have any good news, whether you are the parent, a parent of an ex-premature baby or of a child with additional needs, I’d love to hear your good news in the comments section here or on Twitter. Mostly, though, I just hope you have all had some good news this week!
I have been so angry this week, so saddened by the comments of Cllr Collin Brewer, who after previously standing down from his post for discriminatory comments about the disabled has stood again and been re-elected in Wadebridge East, Cornwall. And things have gone from bad to worse. His target now: disabled children like my son, whom he hopes might either be aborted on the grounds that public toilets might have to close to fund their care or be euthanised after birth like a deformed lamb smashed to death by a farmer for whom they are not economically viable.
Not much to be cheerful about there, then. Except there is. The huge outpouring of peaceful protests on social media and the streets, as well as the various petitions drafted and signed have lifted my spirits and reminded me how much stronger and pervasive love and compassion are than hate. If you need to see this for yourself just hop over to the amazing peaceful blog protest launched by the wonderful Hayley of Downs Side Up. I wrote my own post for this and am proud and humbled that a link for it sits alongside links to some of the most powerful and eloquent blog posts I have ever read.
I am just as proud of and humbled this week by my beautiful, healthy 5-year-old, who as I wrote in my post calls ‘disabilities’ ‘abilities’. This week she made a book about babies at school and devoted a page of each of a baby’s key needs as she sees them. She listed and drew nappies, clothes, milk, love and this:
This is her giving her little brother his anti-seizure medication. Actually I give him his meds, but I would struggle to find a more compelling visual depiction of love and acceptance than this. You could learn a lot from Sissyboo, Cllr Brewer.
This week she is my reason to be cheerful. And proud and hopeful.
I love animals. I grew up with a menagerie of dogs, budgies, hamsters and rabbits. I volunteered to help at animal sanctuaries as a teenager and have been a vegetarian for 25 years. A few days ago Sissyboo (desperate for a dog we don’t have the time or lifestyle to look after properly) asked her evil no-you-can’t-have-a-dog Mummy what my favourite animal was. She expected me to say dogs and guilt me into letting her have one. And for most of the last 36 years ‘dogs’ would have been my answer. But since last year, I’ve had a new one: kangaroos. It surpised her, but probably won’t surprise many of you.
Today is International Kangaroo Care Awareness Day. I had never heard of kangaroo care before having Mr Boo. In my experience it’s one of the few nice things you learn about as the parent of a premature baby. In our first NICU I was given a leaflet by Bliss which gave lots of great advice on the apparently miraculous effect of skin-to-skin cuddles (better monitor readings and saturation levels; the promotion of intense bonding between parent and baby). I struggled to believe it or understand how a baby on a ventilator could be safely removed from their plastic box, but was enthusiatic to try, to try to hold my baby.
When Mr Boo was a few days old, we were all set to give this a go and I was so excited as I drove to see him that morning. But when I got there I found he was ill with suspected meningitis. He was far too ill to be removed from the incubator. Then, almost as soon as he recovered, he was whisked to a NICU nearer home (he was born 65 miles from where we live). Sadly, our local hospital did not actively promote kangaroo care. I asked about it and just kept getting a response of ‘soon’. Mr Boo had started to desaturate badly after feeds (it turned out to be severe silent reflux), they thought it wasn’t a good idea. I agreed it probably wasn’t, but my heart was heavy.
And then one day, an experienced NICU nurse called Sally who’d been on leave for the previous week came on duty and talked to me about the gruelling expressing schedule I was on (every 3 hours all through the day). She asked me if I wanted to breastfeed Mr Boo. I laughed and then realised she was being serious. And then she asked me how kangaroo care was going. She was appalled when I said I had been told to wait. She said there was no reason to. Mr Boo was on Optiflow but he would be fine out of the incubator for short periods and his sats might just improve, she told me. She said if I wanted to try to breastfeed, although it might not work of course, I should start kangaroo care now.
All those weeks of missed cuddles. I had to make up for them.
At just 32 weeks gestation, 3 weeks after he was born, I had my first skin-to-skin cuddle with Mr Boo, thanks to Sally. It was magical. He didn’t desat. In fact, his sats improved immeasurably just as she’d predicted. Not only that, but to our great surprise he started to root around and attempted in his tired, 32-week way to breastfeed. ‘They’re not supposed to have the suck, breathe, suck reflex at this gestation,’ Sally said. ‘But these babies don’t read the manuals or they wouldn’t here in the first place.’
3 weeks later, we left the NICU with an exclusively breastfed baby. He still was 10 months later, I only gave up so I could go back to work (and drink more coffee!). I never expected to breastfeed Mr Boo (I managed just 6 weeks with his healthy, term sister) and feel far too much pressure is placed on women to breastfeed whether their babies are prem or not. But kangaroo cuddles created a bond between Mr Boo and I, regardless of the feeding, that is stronger than I could have imagined.
Sadly, I don’t have any pictures of me doing kangaroo care. The Grumposaur was away with work for 7 days the week I started and came back with a flu that left him unable to see Mr Boo for another 2 weeks. So no one was there to take pics of us, but the memories will never fade. And Mr Boo’s favourite way to sleep even now at 13 months is still his kangaroo cuddle.
If you’ve read this blog before, you’ll know I blog anonymously (no one who knows me knows I write it) and I don’t usually post pictures. But this is a very important day, so I’m making an exception. Here is Mr Boo a couple of weeks after coming home and 3 before his due date.
Kangaroo cuddles don’t have to stop in the NICU! I hope you have some with your babies today wherever you are.
Desperate times call for desperate measures. In a world where resources are becoming increasingly scarce, the climate has become our enemy, and global competition threatens formerly strong economies, tough decisions have to be made. Resources have to be deployed to assist those who can do most to get the nation out of this mess: that is, those with the money and influence to serve the public good as active citizens. Those who cannot are an unacceptable drain on resources. They are a problem and we shouldn’t be afraid to find a solution to the problem their existence creates for the rest of us. Children need to be destroyed.
These are the sentiments of the author of Gulliver’s Travels, Jonathan Swift, or more accurately, they’re the arguments of the viciously ironic persona he adopts as the author of his famous satire A Modest Proposal for preventing the Children of Poor People in Ireland from Being a Burden on their Parents or Country, and For Making them Beneficial to the Public. You know? the one where he famously shocked the British reading masses into compassion towards the poor of Ireland by persuading them to cannibalise their babies? The grotesque humour of the Proposal gripped readers from its publication in 1729 and the essay is still taught widely at schools and universities around the world as a fine example of literary irony and satire.
It’s an essay I’ve taught many times before and the humour of it savages me with its brilliance every time I go back to it. But lately Swift’s words have ceased to be so funny and not just because it’s tedious for the tenth year in a row to be confronted with the one poor student who can’t even be bothered to go onto Wikipedia (the refuge of hungover undergraduates the world over) to find out that Swift is NOT BEING SERIOUS. No: it’s ceased to be funny to me because the sentiments have been unironically resurrected by Collin Brewer, an independent councillor for Wadebridge East, Cornwall, who, after being forced to resign once for his discriminatory comments against disabled people, has since been improbably reelected.
Even Swift, with his wild and extraordinary imagination, could not have made this up. Although I wonder if somewhere in the back of his mind, Mr Brewer was recalling Swift’s proposal when he likened disabled children to deformed lambs who should be aborted or smashed to death after birth because of the cost of their lives to the economy. I would go into the ins and outs of his remarks (I can’t call them arguments as that would credit them with underlying reason), but to be honest, they’ve had more than enough air time.
Instead, I just want to say a few things about my little lamb, Mr Boo, and how he has changed our lives. For as Swift implicitly points out in A Modest Proposal, it’s much easier to write off people if you refuse to see them as individuals and dehumanise them as a group: the poor, the disabled, animals.
My son has disabilities, but is not his disabilities. He was born prematurely, but sadly we had no inkling of what was to face him and us, despite having 4 ultrasound scans during pregnancy. So we missed the abortion window, Mr Brewer, darn it. (Oh, I’m being Swiftian, didn’t you realise?) No: my son contracted meningitis at 3 days old. It is most likely because of that, not some pre-birth condition or event, that he has epilepsy, developmental delay and likely cerebral palsy. He was struck down, you might say, like people can be at any age. Like men in their 20s or 60s, say, can be hit by a stroke, for example, another potentially devastated neurological problem that can leave lives marked. Oh sorry, I forgot you know about that. So should we withdraw aftercare from stroke victims? No? Oh I see … (Actually, I don’t see, where’s Wikipedia when you need it?)
Hang on. You were being Swiftian weren’t you? You didn’t mean it, did you? You were ironically trying to draw our attention to the myriad ways children and adults with disabilities contribute to the families and communities they live in. How they contribute through their ‘ABILities’, the word Mr Boo’s 5-year-old healthy sister (oh, good we get to keep her!) uses to describe the cognitive and physical challenges faced by those she has come to know and love in the last year. (‘Why do people call them “DISabilties”, Mummy, when these people can do loads of things?’… Out of the mouths of babes, as they say.)
Who knows where Mr Boo’s abilities will take him. But wherever that may be he has touched so many already in his short life. He has made me a better person and a more compassionate person, a campaigner, an advocate, a volunteer. And if it’s hard, for you to see the value of the love and compassion he inspires, let me tell you he has generated some real notes too, encouraging others to give up their hard-earned money when I ran a half marathon on his honour. It’s the first of many such ventures I’m undertaking, but I’m sure you’re not interested in that.
Let me just say I’ve tried to give something back. For him and for my gratitude that we have him. But not because I am persuaded by the spurious economic valuation of human life to which you subscribe and that Swift’s essay shows us was already outdated by the early eighteenth century.
I do this because I am grateful, I am compassionate and I love and am loved more than I ever knew was possible and fear you may ever understand. And all of this contrives to make me a better citizen than you will ever be.
This post was inspired not just by my indigination but by a call for a peaceful blog protest by the wonderful Hayley on her blog Downs Side Up. Please take the time to read all of the fabulous posts on this page. More are being added over the coming two weeks, so keep popping back.
Mr Boo and public holidays don’t get on. All my plans for Easter 2012, a last and long holiday with Sissyboo before her little brother was supposed to arrive 2 and a half months later, was totally upskittled by his surprise entrance on the Monday before. Easter Sunday, as he lay lifeless quietly fighting meningitis and sepsis, was one of the most gruelling days I hope we’ll ever have to get through.
So we had high hopes for Christmas. We were all together, after all, and we were going to my parents’, so I could relax. We were going to make it up to Sissyboo.
And then Mr Boo started hiccuping on Christmas Eve while I was breastfeeding him after he had woken up from a nap. It was kind of funny and cute feeling the pulsing of his pleasantly chubby tummy against mine.
In the wee small hours of Christmas morning when he woke up for a feed it wasn’t cute any more. He wasn’t hiccuping, I realised. He was flinching to one side in an upwards movement from his belly to the crown of his head, which then turned to the left slightly. It was happening in clusters. These weren’t violent movements and he smiled throughout. But it was wrong. I knew it was wrong.
I woke up The Grumposaur. He was a little worried but since the movements stopped as quickly as they started he looked on the bright side. ‘It’s probably nothing,’ he said. I said I thought it was a seizure. He said it didn’t look like one. He was right: it didn’t. It was probably Mr Boo just doing one of his weird old Mr Boo things. (He has a lot of those.) We would wait and see.
We tried to make Christmas Day as fun for everyone, especially Sissyboo, as we could, but inside I was screaming in agony. I knew this wasn’t OK. In fact, I was terrified. You see, I thought I knew what it was, infantile spasms, and told my sister and The Grumposaur. We watched videos of children fitting with the spasms on YouTube. I know that sounds weird, but we were desperate. What Mr Boo was doing didn’t look like the videos we saw, but I knew. I knew this was what it was. Don’t ask me how. I don’t exactly know. My family didn’t believe me; correction: they didn’t want to believe me. And I didn’t want to ruin anyone’s Christmas with my unwarranted anxiety. We were having a big family party on Boxing Day for family members to meet Mr Boo for the first time. I didn’t want to spoil the fun.
But I couldn’t bear it. Just before the party was supposed to start, I phoned NHS Direct hoping they would tell me to go to A and E so the decision would be taken out of my hands. They did and it was. As my relatives pulled up to my parents’ house, I drove off, to Birmingham Children’s Hospital armed with a video on my phone of the hiccups-that-weren’t-hiccups as evidence.
Mr Boo and I were taken to a tiny examination room and he was thoroughly looked over by registrar. She was kind and listened to Mr Boo’s medical history with sympathy and concern. In the 8 months since having Mr Boo I’d got the recital of clinical facts down to a fine art. I sounded knowledgable as I rattled off acronyms. And words like periventricular leucomalacia (brain damage) positively tripped off my tongue. I sounded together and on top of things. Inside I was on my knees, sobbing incessantly and begging medical staff and any god who’d listen to me to help him, to make it all all right. Then when the SATS monitor came out I lost it. I think I may have had (corection: still have) PTSD. Cerrtain triggers do prompt intense memories and visceral reactions. Seeing the little grey box that twice occasioned me to have to administer oxygen out of the wall to my baby floored me.
The registrar attempted to calm me down. Infantile spasms are very rare so it was very unlikely Mr Boo had them, she explained. Moreover the video I showed her didn’t look like a typical presentation of the fits, which often cause a child to jolt forward from the waist, head and arms coming forward in a grotesque prayer position, or can take the appearance of an exaggerated moro or startle reflex as arms and legs stiffen and thrust backwards.
Mr Boo had never entirely lost his startle reflex (he still has it a bit), which is not uncommon in children with CP. Even now, every few months and usually when he is in acute pain (teething or ear infection) you can’t lie him on his back without him startling and going bug-eyed. It used to worry me, but he does it much less frequently now. But when he first did it, aged about 5 months, I frantically Googled symptoms and kept coming across sites about infantile spasms. I read about this condition with a combination of horror at this devastating condition and relief that Mr Boo didn’t have it. I knew his startling was different. It was positional and you could snap him out of it. But what started on Christmas Eve was terrifyingly similar to what I’d read about a couple of months before. OK, Mr Boo’s jerks were not typical of the movements described on these websites, but, crucially, they only happened in small clusters after being asleep. And this was too much of a coincidence. Clusters of seizues in children suffering from infantile spasms most commonly occur as the child is falling asleep or waking.
The registrar thought we could go home, but wanted her senior colleague to see us first. When he came in the examination started from scratch and the requirement to recite the entire medical history reared its ugly little head again. It always does. My record is having to go through it all all 6 times in one evening trip to A and E for croup. I just couldn’t go through it all again that day, so I tearfully handed over the wadge of paediatrician letters I keep with Mr Boo’s red book in his change bag. Once a NICU mum … After telling me how impressed he was with my preparedness, he said that he also thought Mr Boo was probably OK but then asked to watch the video I’d taken. He wasn’t sure what was happening, but he was clearly concerned. We were admitted to hospital. Sorry Sissyboo!
Being out of area served us well, just as it had done when Mr Boo was born prematurely and unexpectedly 65 miles from home. That had taken us to a level 3 NICU that could take babies as premature as he was and cope with the health needs that emerged. Now, again desperately in need of specialist help, we found ourselves in a dedicated children’s hospital with a renowned paediatric neurology team. They met with me quickly and reassured me. The video didn’t look like typical IS, we were told again, but they wanted an EEG. We had one within 12 hours. Goodness knows how long it would have taken to get one in our hospital where they don’t have these tertiary services.
I breastfed Mr Boo through the EEG so he would sleep and the results would be as clear as possible. The lovely woman who did the EEG chatted warmly and kindly to me, but she couldn’t quite hide what she was seeing on the monitor we were on the other side of. I had to wait for a neurologist officially to interpret the results a little later that day, but I knew what to expect from the expression on her face. Even so, when a consultant came in later that afternoon to tell me they had found hyppsarythmia (the chaotic brainwaves that diagnose this horrible condition) on one side of Mr Boo’s brain (the opposite side to the one to which he was turning during the fits) I sobbed like I have never sobbed before or since.
I had just got used to the idea that Mr Boo probably had cerebral palsy. Now we were facing a ‘catastrophic’ form of epilepsy that can cause cognitive and physical regression, global developmental delay and severe learning difficulties. And although IS is a transient form of epilepsy (hence the ‘infantile’ before the ‘spasms’) that usually stops by age 5 if not brought under control with medication before then, in more than half of children it leads to other seizure types later in life.
‘He doesn’t deserve this,’ I cried redundantly. ‘Neither does his sister’. The consultant hugged me, the only medical professional ever to have done this. ‘He is the same little boy’, he said. ‘We got this early and there’s no sign he’s regressed already’. Often developmental regression precedes the seizures. ‘We will beat this.’
We were run through the various treatment types. Frontline treatment varies slightly from country to country and different drugs are more effective than others depending on the underlying cause of the seziures, which in Mr Boo’s case, is likely not genetic or metabolic (although we haven’t had those tests yet), but his brain damage. A 6-week high-dose steroid course of prednisolone is the most common treatment in the UK. They wanted to start us on it straight away, but Birmingham inject these steroids, a treatment that requires regular visits from an epilepsy nurse throughout each week of the course, initially to adminster injections and then to monitor for high blood pressure and blood sugar (two of the raft of side effects this drug can cause). Sadly, our hospital couldn’t support this, so Mr Boo was put on a tranquiliser to get us back to our hospital where a course of oral steroids would be prescribed.
The treatment schedule was explained to us in detail and the neuro phoned our hospital to talk to whoever would be looking after our care when we got back home. Since there are no neuros at our hospital, Mr Boo’s treatment would be ‘overseen’ via telephone calls (‘overseen‘ is an odd word to use, in the circumstances, don’t you think?) from St George’s. There was also, we were told, a very experienced community paediatrician who was also an epilepsy consultant who would look after us longer term, we were told, but he was on holiday for Christmas for two weeks. This did not bode well.
But I don’t want to turn this into another of the how-the-local-hospital-let-us-down-again posts, how their initial refusal to send a community nurse to us led Mr Boo to contract RSV and bronchiolitis from the hospital. How we were rehospitalised as a consequence. How I had to keep producing NHS treatment protocol guidelines and crying to consultant secretaries to get things done. Oh, it’s turning into one of those posts…
Where was I? Oh yes. The prednisolone did not work at first. 1 week at 40mg and the spasms were still there. The day we went up the maximum dose of 60mg they stopped and he has been seizure free since. (This doesn’t always happen but there are various other drugs and even diets that can help.)
So the drugs worked, but they nearly killed me. I’m not exaggerating. My depression and anxiety, about which I had never seen anyone before this time, became unbearable and I changed personality entirely (I’m still not me) as I spent all day staring at my baby, seeing the world as if through a piece of red sweet wrapper waiting for him to fit again. Knowing I couldn’t stop it, afraid he would sleep and wake to fit.
The side effects of the steroids were excruciating. Our chilled out little man screamed all day; he ballooned in weight and didn’t look like Mr Boo any more. His appetite became insatiable. He fed every hour for 30 minutes. I was still breastfeeding and he wouldn’t let me give up. In 5 days I lost 7lbs while eating normally. What’s more, his immune system became greatly suppressed and has remained so for the 3 months since we weaned off the steroid course. We were told that if he came into contact with chicken pox, measles or whooping cough he would need immediate hospitalisation as these diseases could kill him. He still hasn’t been able to have his MMR jab or an MRI as they have only just (last week) left his system.
As bad as any of this these side effects, though, was that Mr Boo became acutely insomniac. For 8 weeks he slept for no more than 3 hours A DAY, in 50 minute chunks. And I couldn’t get him to take a bottle. I was awake all the time for the best part of two months solid. I thought I was going to lose my mind for good.
But I didn’t and Mr Boo’s reaction was extreme, so please don’t worry that what happened to him will happen to your little ones.
The long-term implications of the spasms are still unknown. Mr Boo is developmentally delayed, but then he was before the spasms began and probably these delays can be explained by the CP we’re awaiting a diagnosis for. Cognitively, he seems fine so far, but time will tell. The anti-convulsant he’s on as a maintenance medication is working for now.
We don’t know what’s coming in the future. But you know what? We did survive it and we are lucky. His seizures are under control and I am more grateful than I can say that they came at Christmas because we ended up somewhere well equipped to deal with this problem and, most crucially of all, to diagnose him.
Before I finish let me say again. Infantile spasms are rare. Chances are your child and most children you know will not experience this. But here are some red flags I urge you to familiarise yourself with:
1. Does you child exhibit strange movements that involve limb stiffening and/or jerky head movements either forwards, backwards or, as in Mr Boo’s case (more rarely) to the side?
2. Do these movements typically occur in clusters?
3. Do these clusters commonly occur before sleep or after waking?
4. Is you child regressing? Have they stopped smiling or laughing? Or are they finding it harder to sit or crawl after accomplishing these milestones?
5. Is your child under a year old? Most, but not all, children develop the spasms before reaching 12 months, typically between 4 and 7 months.
Please note that any of the symptoms listed above can have multiple causes other than IS. Note also that a child with IS may not have all of these symptoms.
But, if you are worried, please consult a doctor, armed, if possible with a video of the suspected spasms. It is clear to me and to many others I have talked to on message boards and support groups since that this is not a widely understood or recognised condition. So if your concerns are dismissed or the condition persists without diagnosis (exaggerated startle response – a genuine condition – is often diagnosed for IS, for example), please get a second opinion. Crucially, get an EEG or you’ll never know.
The good news
Prognosis of this condition is very much dependent on the underlying cause, but early treatment does seem to significantly improve the outcome.
If you need further advice or support here are some resources I have found useful. If you know of others, please let me know via the comments box.
1. The Infantile Spasms Community: This online forum got me through some very dark hours. It has a moderator and you have to apply to join, but I got onto the forum quickly and greatly benefitted from the collective wisdom and generosity of this global community.
2. Infantile Spasms National Institute of Neurological DIsorders and Stroke (NINDS) Information Sheet
3. NHS guidelines on the treatment protocol for IS. I had this downloaded to my iPhone and repeatedly showed it to doctors and quoted it frequently.
It’s that time of the week again; a time to reflect, to make sense of the chaos that is our life and to remind myself of all the things that are good about it. Best of all, from my point of view, it’s a place where you can post your good news in the comments section. We all need a bit of good news and it seems to me that parents of premature or special needs children sometimes need it more than others. And to be honest, I’ll take it where I can. Whether it’s mine or someone else’s.
This week’s good news from the Boo household has a theme: the wheels didn’t fall off, and I don’t mean off the car, although that reminds me that the rear tyres have needed replacing for a month… No: I mean the wheels haven’t fallen off the precarious vehicle we’re kangarooing through life on.
You see, I went away last weekend, for a whole weekend. I have never left Mr Boo for more than 2 hours before and usually only while I was only about 5-10 minutes walk away. So, because I like to do things the easy way, I decided my first parting from him for 3 days should take me 3500 miles away to New York where my cousin was getting married. It was an amazing trip (although watching The Impossible on the plane was a VERY BAD idea for an on-the-edge mum with painful separation anxiety). There was a moment, during the cocktail party wedding on the Saturday night when I really felt like Carrie Bradshaw would walk in at any minute. I did struggle with my anxiety, though. Quite badly at various moments. But it passed. And everyone at home was FINE. No one decided to have a hospital admission. The Grumposaur learned to do Mr Boo’s physio, give him his medicines, put him to sleep (none of which he’d done before). He gained a greater understanding of Mr Boo’s needs and is closer to him than ever before. And as importantly, he knows he can look after him. So if that proverbial bus does run me over…. Anyway, it’s been a great experience all round.
Because I really like to make life easy for myself, the day after I got back from the US and with an unhealthy dose of jet-lag, I went back to work for the first time after 13 months of maternity leave and a period of sick leave for my acute anxiety and depression. (The a and d are still there, but since this is good news, I’ll come back to that another time.) Leaving Mr Boo was hard, although not as hard, in some ways, as it was to leave Sissyboo five years earlier. I know the nursery well (Sissyboo was there for 4 1/2 years) and the trust is of long standing. I still don’t know if me trying to work is the right thing, no matter how necessary it is. I don’t know if the nursery can be expected to support us in supporting his development in the way Mr Boo needs. But he is very happy there and that is wonderful.
Going back to work has been very difficult in lots of other ways, though. It may sound odd, but one of my biggest worries was walking into my office, the place where 13 months ago I was bent double hoping the person on the other end of my 999 call would tell me not to be so silly and I wasn’t really in labour. I opened the door with a dry mouth and a thumping sensation in my chest, but once I remembered to breathe and look past the neat piles of 13 months worth of post I saw the most beautiful vase of flowers from my colleagues and found a mug which I’d got for winning a prize I didn’t know I’d even been nominated for.
When I collected Mr Boo I learned he had been fine all day and he was trying, as usual, to eat his new glasses. (Boy who can’t use his arms properly has still worked out how to get his specs off his face – not easy when they curl completely round his ear – and put them into his mouth.) When we got home, Sissyboo was trying to persuade me she was old enough to watch Spiderman and I had a gazillion phone messages from healthcare professionals to deal with. Nothing had changed. That was reassuring.
Who knows if this is the right thing in the long term. But for now, we’re all OK. And OK is pretty good in a weird old week like this, if you ask me. Better than good, in fact.
OK, now it’s your turn…
Sissyboo has a bit of an Apple fetish. She is almost as obsessed about I-products as her Dad. And that’s saying something. If she’s not trying to watch the latest episode of The Dumping Ground on the iPad, she’s got my iPhone in her hand so she can pull Talking Tom’s tail or watch Annie in Portuguese (I’m not kidding, this has happened more than once). Her latest favourite hobby, though, is trying to watch that YouTube video where a talented American guy sings about what happens after the happily ever after for Disney heroines Ariel, Jasmine, Belle and Pocahontas. In case you haven’t seen it (look it up, it’s great!) all I’ll say is it involves BP oil spills, Guantanemo Bay, accusations of beastiality and STDs. That’s why I said trying to watch. We turn it off, much to Sissyboo’s consternation, when she gets to the juicy bits.
I love the video and not only because it’s a great antidote to the Disney Princesstastic world we live in as parents to a 5-year-old girl (don’t get me wrong, I like a lot of these films, just not always what the merchandise turns them into). It also speaks to the cynic in me. I often struggle to buy the supposedly happy endings of films or great novels and sometimes struggle to believe their scriptwriters or authors believe them either. Take Jane Austen, for example. Marianne Dashwood in Sense and Sensibility would never be happy with Colonel Brandon. He’s not really Alan Rickman, after all, whom I would marry in a heartbeat. No: Colonel Brandon is a gouty old man wearing a flannel waistcoat for heaven’s sake. She’s a teenager with an overactive imagination and sexdrive. This is not what she wants and I’m never convinced by arguments it’s what she needs either. And don’t get me started on Lizzie Bennet and Darcy. He’s not Colin Firth, lest we forget.
But for all my cynicism about the endings of books and films, I’ve found that my attitude to endings in life is rather different: somewhere between the sanguine and the downright optimistic.
Since having Mr Boo I’ve had to get used to people (including ourselves) talking about our life like the contestants on a reality show. We don’t have a life any more, it seems. We have a ‘story’; we are on ‘a journey’. And of course, stories end and journeys are supposed to conclude, one way or another. (As an aside, I think this is why I’ve been so totally seduced by the messiness and unfinishedness – I know that’s not a word, by the way – of blogs.)
The possibility that Mr Boo’s story would not end well was brought home to us early on. As I’ve written about before, it never really occurred to me until Mr Boo was a week old, and succumbed to meningitis, that he might not survive his premature birth. But I soon realised that everyone else had feared this right from the start. After he was born we received so few cards celebrating his birth compared to the days following the birth of his sister (and we have a whole lot more friends now). People who did send cards often wrote a note saying they would send a gift when he came home. I soon realised they meant if, not when. Don’t get me wrong, people were caught on the backfoot when Mr Boo was born (as we were) and I didn’t covet gifts for him. But it felt as if the (non-)contents of our letterbox were writing him off every day. People didn’t expect him to come home. That hurt. It still does.
But all’s well that ended well and we got out of the NICU. In 6 weeks. 5 weeks before he was supposed to be born. We were so thrilled. We thought, in our naivity, that the biggest hurdles were overcome (and to an extent, we were right). We had our happily ever after. And it was heavenly for a few days. And then we had more headscans. And then Mr Boo didn’t start doing things he should. We were just starting out, it turned out.
I went back to work this week and to ease the transition and to avoid having the same conversation I’ve had with so many well-meaning people since Mr Boo’s birth I sent an email round to my colleagues explaining precisely what had happend in the 13 months since I dashed out of a meeting to phone for an ambulance. I was candid and went into enough detail in the email to give people a clear picture of what our life was like now. And I’m so glad I did it. But even so, friends still wanted to know the same thing when I chatted with them in the corridor yesterday: ‘He’ll recover won’t he?’ ‘Will he be OK?’ And they tried to reassure me: ‘It’ll be alright in the end, I’m sure.’ When is this mythical ending day, I wonder? When did life become a Disney film?
Of course, I’m touched that people want the very best for Mr Boo and for us. And I am so grateful for their love and support, which has carried me through much of the last few months. But I find that I can’t really answer their questions or address their comments. I just smile and thank them. Why? Not because we don’t know how things are going to pan out (and of course, we don’t know how extensive Mr Boo’s physical and cognitive development will be impaired by his brain damage). No: it’s because I think we’re speaking at cross purposes.
Will he recover? No. He has permanent brain damage and brain plasticity, while marvellous and utterly beguiling, can never fully repair what’s been lost. But will he be OK, will it be alright in the end? Well if this means (as I think it variously does) will he walk or go to mainstream school, the answer is: maybe; or then again, maybe not.
But will he be OK? Of course. He is OK and he will be OK. He is the most lovely, contented yet determined baby I’ve ever met, and he loves and is loved so much. It will be alright in the end because it’s already alright. It has been from the beginning actually.
Our life isn’t perfect. Whose is? I have cried more in the last year than I have in my whole 36 years to date and I would do or give up anything to get a better start in life for Mr Boo. But at the end of each day I am more genuinely and deeply happy than any Disney or Jane Austen heroine.
Happiness, I’ve discovered, is a state of mind, not an objective reality. End of.
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