It was the best of times, it was the worst of times

(Charles Dickens; A Tale of Two Cities)

The experiences of our little household pale into insignificance against the backdrop of political turmoil, cultural change, and sad losses amongst our beloved SWAN community, that characterised so much of 2016. Nonetheless, we had our own ups and downs…

Our year started on a knife edge as we awaited the final scan of our unborn baby three weeks before its due date. A year on, I simply cannot imagine life without the chubby little bundle of laughter, energy and character that is our Caitlin. Her middle name, Faith, reflects the gamble we took and the faith we had that it would work out, but I had absolutely no idea just how well it would work out; what an incredible difference she would make to our family, how happy she would make us and how she would complete us.

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Do not be fooled by the angelic appearance

Aside from Caitlin’s birth, I recall little from the first few months of the year. They have become overshadowed in my memory by the period from May onwards, during which Benjamin has been repeatedly, seriously, ill. Over that time it has been rare to have more than two weeks at home between hospitalisations, operations, intubations; week after week in high dependency and many, many doctors scratching their heads. During this time family life has inevitably suffered. We’ve been living long-term on a short-term emergency footing, planning day to day, shifting the girls from pillar to post, every one of us missing the others, staggering from one admission to the next with barely time to breathe. The doctors now say this will likely continue for years.

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But while Benjy’s physical health may remain precarious, the impact on our family doesn’t have to continue. Positives have emerged from the situation. For a start, we’ve really discovered who our friends are, just how numerous and how generous they are. We’ve fallen firmly on our feet in the community we chose to live in and we have felt included and loved within it this year.

Our two girls have proven to be a huge support, to ourselves and to each other, during the interminable hospital stays. Tolerant, patient and flexible, although often separated during the day their relationship has come into its own whenever they are together. This year would have been so tough on either of them had they been alone. Together, they have borne it far better than I, and forged the foundations of a strong, loving relationship (and comedy partnership) that I hope will last long into adulthood.

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Plotting something

For myself, the initial despair that we might be facing more years like 2016 pushed me to accept that we should ask for more formal help; that we should make a plan. With much help and encouragement from my social worker aunt, from the charity Kindred, from social services, Rachel House Children’s Hospice, and others, I have built a package of practical, medical, emotional and financial support that gives me hope that we enter 2017 more resilient, able to move on from our emergency footing to live life despite, during and through Benjamin’s hospital admissions.

We are now better placed to support Benjamin as much as we can from home: with prophylactic antibiotics, a nebuliser, suction machine, ‘sats’ monitor, weekly specialist physio visits and emergency feeding regime. The down side, of course, is that our home is more like a hospital and my role more of a nurse, but that’s a small price to pay for less time actually spent in hospital and torn between my children.

With support from social services, Caitlin will be able to attend nursery even though I am unable to go back to work to pay for it (and I’m more than fortunate that my employers continue to be incredibly flexible and understanding about this). It’s a little earlier than I would have liked her to start, but will give her a consistent place to go when I’m in the hospital with Benjamin and – even better – the same consistent place as Jackie. Being the outgoing little soul that she is, and being so used to being cared for by strangers, she settled in without a backward glance at Mummy. Like Jackie, she’s already having to grow up too quickly; it’s bittersweet but I am so proud of her.

Proud of me? But I'm stuck under a table...

Proud of me? But I’m stuck under a table…

And, when he’s well enough, I’ve also thrashed out a plan with Benjamin’s teachers and headteachers, council safety and transport officers, and his incredibly competent and lovely school nurse, to enable him to attend nursery too! It’s going to take some dedication from us all, but eventually he should be able to transition to the two full days he’s entitled to at his age. The way his eyes light up when he enters his classroom shows that this is absolutely the right thing to do, and the work we will put in to get him there is nothing compared to how hard he works to hold his head up, to move his eyes, to switch his switches, when he is there. Benjamin is the inspiration that keeps us all moving forward.

Other things have fallen into place to make life seem easier as we move into 2017. We have a car. We even have a parking space for it! Benjamin has qualified for monthly respite breaks from NHS Lothian Children’s Services. He’ll receive his vaccination boosters again and he’ll be tested and retested as doctors continue to seek answers to his problems. He’s been accepted for therapy at the renowned Bobath Cerebral Palsy Centre in Glasgow. 2017 will be nothing if not busy!

We know not all of this will go to plan. Benjamin will, without doubt, spend extended periods in hospital. Plans will be put back, put on hold. Some days it will take all my efforts to keep him well enough to stay home. Some days I’ll be successful: already over the past few weeks he’s had infections that I’m sure would previously have seen him in hospital, and the feeling of achievement when he comes through one is almost enough to make up for the lack of sleep! Some days I’ll get things wrong. Some days he’ll just be too sick, and I have to responsible enough to make that call. But being in hospital is no longer the spectre it may seem from outside. Being ventilated is not to be feared, it’s just the level of support he needs at that particular time. All the time we are learning, our normal is changing, and through all that we can cope and we can thrive.

Thus our big lesson to take into this New Year is to manage our expectations for it. To hope for the best and prepare for the worst but never to fear it. I don’t mean this to sound negative: if we can prepare for the times of sickness we’ll be ready to take full advantage of when Benjy’s well. So while I know I’m not going to get a foreign holiday – or even get to London – for a couple of years, if Benjamin is fit and the weather is fine we can damn well pack the tent into our big new car and have just as much of a break a few miles down the road. We may not be able to commit to a dog, but our new guinea pigs will be showered with love and (maybe rather too rough) affection.

Just before Christmas I received a phone call from our new paediatrician, not with an appointment, a cancellation or a result, but just to check how we were doing and to tell us that everyone in the Sick Kids was thinking of Benjamin and wishing him well. I can truly believe that, because Benjamin brings out the best in people. In what could have been, if not the worst of times certainly a difficult year for us, our children, friends and family, the professionals that work with us and all those who helped us, have made it one of the best. With the festivities falling nearly three weeks after his last release from hospital I knew we were on borrowed time, but spending Christmas morning opening stockings in bed with all three of my children is something I will always treasure, and a memory that will carry me through whatever the next year may bring. With much love to all our readers for 2017.

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Being Benjamin’s mum

I don’t know why I still subscribe to them. Those weekly emails from the parenting websites listing the milestones my children ‘should’ be reaching at three weeks, three months, three years. It’s weaning time! … How to get your toddler to sleep … Starting school … and, this week, 50 reasons why it’s fun to be a [mainstream] parent.

I know they mean well. If you’re struggling with sleepless nights or a tantruming toddler it’s good to be reminded of the positives, right? But what if none of those things that make mainstream parenting fun apply? What if ‘discovering how lovely the dawn chorus can be’ just doesn’t cut it? What if you’re never going to hear him ‘say I love you Mummy’? Is parenting a SEND child no fun?

Yes, it can be exhausting, challenging, nervewracking, heartbreaking. But I firmly believe that deeper troughs make for higher peaks. SEND parents not only learn to celebrate the tiniest inchstones for all they are worth, but to see the funny side of things that frankly aren’t funny at all! I’m sure these will be different for every SEND family but, on Benjamin’s third birthday, I’ve put together my own list of reasons it’s fun, wonderful and inspiring to be his mum.

  1. He gives the best smiles
  2. He gives the best hugs
  3. Running my fingers through his curls
  4. Looking into his big brown eyes
  5. Tickling the baby-soft soles of his feet
  6. Savouring the simple things with him – the light coming in the window, leaves against a blue sky
  7. Seeing the love his siblings have for him – and how he reciprocates it
  8. Seeing how gentle, loving and patient his Daddy is with him
  9. Seeing his heart rate go on up the sats monitor when he hears Mummy or Daddy’s voice
  10. His smile when you give him a taste of ice cream
  11. His look of disgust when you give him pureed chicken!
  12. Learning a whole new set of skills (nursing, negotiating, engineering, accounting, …). If only I could put them on my CV…
  13. The sense of satisfaction when you hoover a big plug of phlegm out of his throat
  14. The way he looks around in delight when you put his glasses on
  15. How cute he looks in his glasses
  16. An excuse to hang a disco ball in your lounge and have fairy lights up all year
  17. An excuse to play with bubbles every day
  18. Getting to watch Waybuloo on repeat
  19. Shopping – who knew how many gorgeous bibs and onesies there are out there nowadays?
  20. Choosing cute teeny tiny glasses
  21. Choosing snuggly jumpers and snugglier socks
  22. Rediscovering the joy of Christmas – baubles and fairy lights really are all you need
  23. Seeing how he relaxes in the bath
  24. The sense of satisfaction when you manage to capture that smile on camera
  25. Learning his unique language
  26. Seeing him turn his head to look at me when I speak
  27. Seeing him smile when I walk into a room
  28. The special kisses that he saves just for mummy
  29. The special nappies that he saves just for Daddy!
  30. Morning snuggles with five in the bed (we really need a bigger bed)
  31. That feeling that you could watch him sleep forever
  32. Making amazing new friends with amazing wee heroes for children
  33. Meeting a community of other SWAN parents who just get it
  34. Everybody in the town wanting to stop and hear how he is
  35. People passing in the street saying ‘You’ve got your hands full!’ and thinking ‘Yeah, and I wouldn’t have it any other way.’

All this in just three years; I can’t wait to see what you bring us in the future. Happy Birthday my gorgeous boy, I am truly grateful to be your mum.

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What Zika virus means to me

“Zika virus could be bigger global health threat than Ebola” … “WHO holds emergency meeting” … “Global health emergency” … “Obama has a new plan to fight Zika,” scream the headlines. There’s something fascinating about an emerging tropical disease isn’t there? No matter how much sympathy we feel for people caught up in the Ebola crisis, for instance, we can’t help gorging – from the comfort of our western homes and hospitals – on the gory details of whole African villages haemorrhaging to death. And Zika virus is somehow more fascinating, more ‘can’t turn away’-terrifying because its effects are insidious. The symptoms are mild; most people don’t even realise they’ve got it. Unless, that is, they are a pregnant woman. And then it does grotesque, terrifying things to the unborn foetus that may not become apparent until birth. Microcephaly. It’s a ready-made horror story.

Except it isn’t. Microcephaly is neither a new phenomenon nor a horror story. It is something close to the hearts of many families throughout the world. Estimates suggest that (pre-Zika) it affects at least two in every 10,000 live births. That puts it in the category of ‘rare diseases’ but by no means the rarest. And now these families, families like ours, find ourselves thrust into the limelight, and not in a particularly good way, with media comments such as “microcephaly is a lifetime disaster” becoming the norm.

Microcephaly literally means ‘small head’ and is caused by a small brain – whether due to a genetic disorder, trauma, or infection. It can be an isolated symptom in an otherwise ‘normal’ individual, or one of many manifestations of a complex, known or unknown, condition. Consequently, the effects of microcephaly can range from mild to severe and may include physical disabilities, learning disabilities, developmental delay and epilepsy. For my son Benjamin, whose microcephaly is towards the severe end of the range, it means he is non-mobile, non-verbal, incontinent, epileptic, developmentally delayed (at two years he is functioning roughly at the level of a two-month-old), fed through a tube into his stomach, and on a daily cocktail of medications. He is also the most contented, smiliest little boy – and a complete flirt with the ladies to boot.

The face of microcephaly to me

The face of microcephaly to me

I have read several great commentaries by parents of children with microcephaly (for example this one from The Heartful Mom, or this interview in The Washington Post) arguing forcefully against the bad press applied to those with the condition. I couldn’t improve upon these, so instead offer up a few thoughts that the Zika crisis has thrown up.

From a personal perspective, as the parent of a child with an undiagnosed condition, I am constantly on the alert for possible explanations. My initial thought – however illogical – on hearing of the proposed link between Zika and microcephaly was could Benjamin’s microcephaly have been caused by Zika virus? Although I did used to travel the world – for work and pleasure – and generally had a pretty laissez-faire attitude to health precautions, that has all been curtailed by the arrival of children. The last time I was in the Americas was 2009 (an amazing trip to Guatemala where, among other things, my husband proposed to me on an active volcano). This was four years before Benjamin was born, and at least five years before the disease became prevalent, so I am clutching at some pretty invisible straws here! There remains the possibility that I could have contracted some other virus during pregnancy, but tests for all the likely contenders (toxoplasmosis, rubella, cytomegalovirus, herpes simplex, HIV, syphilis and measles) have come back negative. I also found myself increasingly drawn to the conspiracy theories suggesting that the microcephaly ‘outbreak’ does not result from Zika virus at all, but from the mass inoculation of pregnant woman against whooping cough using the DtAP vaccine, which was initiated in Brazil at around the same time as the virus emerged. Being both pregnant and paranoid, I already had small concerns in my mind, because having the DtAP vaccine was the only thing I did during pregnancy with Benjamin that I did not do with Jackie. Could this have been the cause of his condition? In the end, I have tried to override my paranoia and had the jab in my current pregnancy too, but I did leave it until a much later stage.

But these are really academic, irrelevant questions. Looking outward there are much bigger concerns. For most of us, this is just another of the many issues facing families in other parts of the world – maybe even a relatively minor one in the face of war, famine, or natural disaster. Having no experience of any of these things, it’s easy to put them to the back of our minds and carry on with our day to day lives, maybe popping some loose change in a collecting tin when it’s rattled under our noses. Microcephaly, however, stares me in the face every day. We manage Benjamin’s condition, keep him healthy, happy, growing and developing, because we receive a huge amount of input from health professionals, therapists, educators, social workers, our wonderful hospice, etc., etc., etc. How are mothers in the Zika-affected countries going to cope without such comprehensive help? How are already stretched or non-existent health services going to treat thousands of children – children like my Benjamin – with microcephaly? Are pregnant women in Zika zones going to be encouraged to abort their babies just in case? How can we help? Both UNICEF and Save The Children are accepting donations for programs of education, research, providing mosquito nets and removing mosquito-breeding grounds – aimed at prevention of further cases, but I have yet to find an organisation actively supporting the children and families already affected by the outbreak. Microcephaly need not be a ‘lifetime disaster,’ if we can find a way to help.

Gambling

Image © Ralf Roletschek [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

Image © Ralf Roletschek [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)%5D, via Wikimedia Commons

I haven’t blogged for several weeks. I couldn’t. My mind and body have been consumed with something that I – and my family – weren’t yet ready to share.

We have decided to try for another baby. Some might say this was a brave decision. I’m sure others would call it reckless, selfish, … crazy. It surprised me, actually. I thought we would continue to skirt around the issue until it was too late. Or, I thought we would play it safe. I thought one of us, at least, was naturally risk averse, and the other wouldn’t push them. Turns out, on matters of life and death, we are both gamblers.

We agreed that the benefits a ‘normal’ third child would bring to our family, and particularly our existing children, were so great as to make it worth the risk, the one-in-four risk, that that child will not be ‘normal.’ We did our research: we know that with no genetic diagnosis there will be no early way to test. We know that in all likelihood it will be 32 weeks before any abnormalities can be detected. We know that it might be 38 weeks before we can be even fairly certain if the baby does not have the same condition as Benjamin.

And now here I am, carrying that baby, for as long as it takes and hopefully longer.

It can be lonely, being pregnant. Those first twelve weeks when it’s just your little secret aren’t so much fun the third time around. You’re too tired to go out for coffee (you shouldn’t be drinking coffee anyway) and you’re in bed by 9pm, so the majority of your conversations are limited to a non-verbal baby and a three-year old who doesn’t understand why you’ve always got your head down toilet.

And if the whole pregnancy is to be overshadowed by fear, fear of that looming one-in-four chance, what then? You don’t like to talk to your family, to get their hopes up over a baby that may never be. You hide away from your friends – the fewer people see your growing bump, the fewer people you will have to explain to if that bump disappears before its time. You feel guilty among the wonderful online community of other mums of undiagnosed children, because you know many of them have faced the same fears and made the equally brave decision not to have another child; the last thing you want to do is reopen their old wounds.

I am blessed to have a fantastic, caring husband with whom I can share everything and be totally honest, and who is with me one hundred percent in this gamble. I am grateful to have a supportive obstetrician. I know that she knew that we would take the risk: her parting words at our pre-conception meeting were, “I’ll see you back here when you are pregnant.” I am also fortunate to have been able to talk to the rector of my local church. It is a great comfort to know his thoughts and prayers are with me. And now, I am pleased to be sharing our hopeful (I dare not say joyous) news with you. I would love to have your thoughts and prayers too.

Highs and lows of a feeding tube

It’s been a few weeks now since Benjamin got his mic-key button fitted. The operation went smoothly and we were home in a couple of days. Beforehand, I asked “will this give me my happy little boy back?” With all the research on earth we weren’t going to know the answer to that question without trying it. Here’s what we’ve found out so far.

On the plus side…

  1. Benjamin is thriving, piling on the pounds, filling out, and growing out of his clothes.
  2. We don’t have to spend all day just trying (and failing) to squeeze enough calories into him orally.
  3. We’re all getting (a little bit) more sleep. There are still plenty of other reasons for Benjamin (or Jackie) to get us up in the night, or to keep us up late, but at least hunger isn’t one of them.
  4. The button hasn’t (touch wood, cross fingers, do a dance to the patron saint of gastrostomies) come out, so Benjamin hasn’t had an A&E admission since.
  5. It’s easier to get him to take his medications.
  6. I feel slightly less of a fraud for claiming carers’ allowance and DLA, now that he has something obviously “medical” for me to deal with.

On the minus side…

  1. I can no longer bring him into our bed to comfort him. At least, it takes a lot more effort to switch off and disconnect everything, and later reconnect it all; not ideal when you and he are both knackered and you just want to scoop him up and take him straight under the duvet.
  2. Overnight feeds mean over-full nappies, so more often than not I have an uncomfortable boy and a heap of bedlinen to wash in the morning.
  3. It’s a tiny bit more hassle feeding on-the-go. And we get more funny looks.
  4. We have a lot more stuff to travel with. Gone are the days when it was just me and my breasts. Now we have pumps, night milk, day milk, giving sets, extension set, syringes, more syringes, spare buttons, stuff to wash it all with, and gallons of cooled boiled water, on top of all his medications and the usual nappies and stuff. Holidays by train are looking increasingly like a thing of the distant past. But it could be worse: we don’t, like a lot of people, have to carry oxygen cylinders and sats monitors and suction-whatevers. Yes, it could be a lot worse.
  5. It looks like it’s for good. Basically, his tummy is full all the time. If we’re going to keep giving him half his calories overnight through a tube, I fear he’ll never be hungry enough to learn to eat properly in the day. So is this it? Will he be tube-fed for the rest of his life?

So, on the whole, a big success. Refer to plus-point 1: Benjamin is thriving (his other health problems notwithstanding). We are, slowly, getting more smiles. It would take an awful lot more negatives to outweigh that. And therefore to minus-point 5: Will he be tube-fed for the rest of his life? Who cares?

It will get easier

“It will get easier,” they said. Once he gets past the ‘two year old functioning as a new-born’ phase and into the ‘five year old functioning as a one year old’ phase it will be more rewarding, less thankless, more fun. Of course, there’s no guarantee he ever will move on from his present stage of development. He may stay like this for his lifetime. He may regress. But it got me thinking: When will it start to get easier? How will I know when I’ve passed the hardest point?

It’s hard to sit on a cold chair in a dark MRI suite and be told your unborn baby will never walk, talk or feed himself.

It’s hard to leave your baby girl with her grandparents while you thrash out with your partner whether to keep that baby.

It’s hard to sit in a special needs group with him and realise he is the least able child in the room.

It’s hard to hold him late into the night, coughing and coughing, struggling to breathe, vomiting.

It’s hard to hold his writhing little body down until a general anaesthetic takes effect.

It’s hard to cry down the phone at the DWP for delaying your carer’s allowance yet again.

It’s hard to watch all your mum friends move on and go back to work.

It’s hard to see your little girl sitting colouring pictures in A&E when she should be at her swimming lesson.

It’s hard. But the same friends who said “it will get easier” also said “try to enjoy him now.” There’s no point wishing these days away, waiting for some hypothetical time when it gets easier, and missing all the enjoyment to be had between the hard times. Because:

It’s easy to be with him.

It’s beautiful to cuddle him.

It’s inspiring to be part of a community of parents and carers – local and further afield.

It’s exhilarating to try carve out a new career niche for myself that fits both my work aspirations and parenting commitments.

It’s comforting to see his big sister take his hand.

It’s enchanting to watch him smile at a sunbeam coming through the window that no-one else has noticed.

So I scoop him up and dance around the kitchen to Radio 2, just because I like the song they are playing and I know he likes to dance (and there is no one to see). And I realise, life is just a series of moments like this. Hard moments and easy moments. Fun moments and melancholic moments. Moments we’d rather forget and moments we’ll treasure forever. Incomparable moments. How will I know when I’ve passed the hardest point? I won’t, so I just have to try and enjoy the journey.

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Dreams

You know that wonderful feeling you get watching a sleeping child? That sense of peace, and of promise. That perfect little nose. Those long dark lashes and wayward curly hair. That soft, soft cheek under your lips as you kiss him ever-so-gently. The little sucking motions he makes as he dreams. You wonder what he’s dreaming about.

And then you realise that you, too, are dreaming. Dreaming that when he wakes up, he will be the normal little boy that he looks like at this moment. That he will catch your eye, roll over, hold his arms out for a cuddle. That he will slide out of bed and toddle down the hallway. That he will smear his breakfast all over the kitchen. That he will protest, loudly, about getting washed and dressed. That he will charge into nursery to greet his friends at full pelt without a backward glance. That he will call you “Mummy.”

**

If I had my time again, I might study psychology. It fascinates me, as one of our last frontiers of discovery. We can extrapolate what happened at the farthest reaches of the universe, a billion light years ago, but we cannot tell what is going on in someone else’s brain. Two people can look at the same scene, but never know what the other is seeing.

In particular, I wonder about Benjamin’s brain. We know its structure, thanks to the MRI scanner, perhaps more intimately than that of most brains. We know the pattern of his brainwaves under an EEG. But we don’t know what he’s seeing, hearing or thinking. Does he dream at all? Does the world seem hazy and distant, or overwhelming in its Technicolor clamour? Perhaps he’s taking in everything around him, but cannot control his muscles enough to respond in any way. Perhaps he’s frustrated, trapped: that is my worst fear.

Actually, he doesn’t seem frustrated at all. Most of the time he appears relaxed, contented even. I hope that means he’s happy with whatever it is that he sees, hears, feels and thinks. But placid and unmoved as he may be, it’s hugely important that he’s given every chance to communicate, to learn ways in which he can influence his surroundings. We must make every effort to understand what he’s trying to tell us, even if he doesn’t know he’s trying. To spot the nuances in his awkward hand gestures that indicate the difference between reaching out and pushing away. To feed back to him that he can influence his surroundings.

Benjamin has a “BeActive Box” also known as a “Little Room,” which is a basically a three-sided, Perspex-roofed fish tank in which he can play. The idea is that it both blocks out disturbance from the outside world and amplifies any movement or noise that occurs inside the box, so Benjamin can get the maximum feedback possible from any movements he makes and any toys he touches. Whether or not it’s working, he certainly seems to enjoy “his box” as we call it … he usually falls asleep in there.

He’s also recently had a few sessions with an iPad: just touching the screen, exploring cause and effect, making a firework explode or a xylophone “ting.” It’s easy to read too much into it, to think he’s interested, he’s trying, he knows that cause does lead to effect. Yet, we have to assume that he is engaging, or we would never do anything but plonk him in his box to sleep… Maybe one day he will even learn to use that iPad to communicate using his gaze. I’m grateful that we live in a time where such things are, at least technologically, possible.

Far more important than technology are the many wonderful therapists and teachers who visit us to help unlock Benjamin’s brain. They’ve bombarded him with sensory toys, and me with a host of new languages: BSL, Signalong, Makaton, Canaan Barrie, TaSSeLs. Given his apparent visual impairment, I’m focusing on the tactile signing systems, at least for communicating to Benjamin. If we can be consistent enough and committed enough, he may start to associate signs with events. For him to communicate with us, to start to teach us what he is feeling under that unruly mop, we must learn to interpret his expressions, body language, and vocalisations. So far we understand smiles, grimaces, a cry for hunger and a cry for pain. An open mouth means “yes” to food or milk. A batting of the right hand means he wants to play. Extension of both arms may indicate discomfort. Eighteen months and I have learned six, maybe seven of his “words.” It’s slow, slow progress and a demoralising success rate. But we have to keep trying if we are to keep our dreams alive.

What's going on in there?

What’s going on in there?