Misfit

Is it just me? Every time I hear or see the phrase ‘Dress like a detective’ (that’s every day this month then, as I’ve been doing the SWAN UK Instagram Challenge), I want to sing it to the tune of ‘Walk like an Egyptian’.

No? Just me then. That’s okay, I’m used to not fitting in.

Benjamin and I were in Ikea the other day buying a shower-curtain when a gorgeous, blonde little girl with thick glasses bounced up to us and said ‘What a beautiful baby, I wish we had one!’ I was a bit taken aback because although Benjamin was in his buggy he clearly isn’t a baby any more … and I couldn’t really imagine any ‘normal’ family wishing they had a child like Benjamin, at least not until they got to know him. Then the little girl’s mother joined us and said, ‘And look! He has a feeding tube just like you.’ I started to understand. The little’ girl’s eyes lit up. ‘Wow Mummy,’ she said, ‘That makes three of us. Me, this baby, and my teddy.’

I can’t really describe her delight at finding someone like her. (In the middle of Ikea, of all places). What must it be like to not know anyone ‘like you’ except your teddy? (And all credit to whoever gave that little girl a tube-feeding teddy). To not only not feel ‘normal’, but to not know anyone you could fit in with?

For a long time, Benjamin didn’t fit anywhere either. His physio said he had ‘symptoms of cerebral palsy’ – but not cerebral palsy. His neurologist said he would ‘likely have epilepsy’ – but he didn’t have epilepsy (he does now). His ophthalmologist said he was ‘probably visually impaired’ – but with someone as profoundly disabled as Benjamin he couldn’t actually tell. We didn’t know a child even remotely like Benjamin. I couldn’t find a website or a scientific paper that would tell me how he might develop, how much he would be able to do, how long he might live.

And if Benjamin didn’t fit, I didn’t fit either. Haunted by the innocent yet infernal question, ‘What’s wrong with him?’ I would shy away, mumble something, shuffle my feet, then berate myself for not giving Benjamin the answer he deserved. Having had some success as a researcher in a past life, I turned Benjamin into my latest research project, scouring the internet for matching patterns of symptoms, following citation trails back through obscure journals. Only to find, not only that he didn’t fit, but that I felt like a failure.

In fact, the only place we totally ‘fit’ is SWAN UK (Syndromes Without a Name). We fit here, because everyone is a misfit. All 2,000 families of us. All different, all undiagnosed (or once undiagnosed, or diagnosed with something so rare it might as well be undiagnosed). Finding SWAN UK was, at first, like that little girl finding Benjamin in Ikea. A sudden realisation that we were not the only ones. Over the years since, that sudden realisation has developed into a warm glow of acceptance. A knowledge that whatever hurdle we face, whatever question we have, another SWAN has probably been there already.

Two thousand misfit families finding where they fit is great, it’s fantastic. I am so glad we’re one of them. But – here’s the amazing bit – 6,000 new undiagnosed children are born every year in the UK alone! That’s an awful lot of misfit children and families that don’t have anywhere to fit. That’s an awful lot of mums dancing alone in their kitchens to The Bangles and not knowing that thousands of other mums are dancing along too (or is it still just me?).

That’s why – this Undiagnosed Children’s Day (Friday 28th April 2017) – SWAN UK is asking everyone to become a detective for the day. Help us find the thousands of other misfits out there. Help SWAN UK achieve its ambition of doubling its membership this year. You can help by sharing this post. You can help by tweeting with the hashtag #undiagnosed. You can help by starting a conversation about Undiagnosed Children’s Day. You can (if you like) help by dressing up like a detective (or an Egyptian) and feeling, for yourself, like a total misfit for the day. If you find a family with an undiagnosed child, please point them in this direction (https://www.undiagnosed.org.uk/). If you can’t do any of these things, you can help by donating a small amount to SWAN UK (just text SWAN11 £3 (or any amount up to £10) to 70070). Thank you.

SWAN UK isn’t the solution to all our problems. We’re still no closer to finding the cause of Benjamin’s condition. We’re still never going to be a ‘normal’ family. I’m still an angry old woman who shouts at people parked in disabled bays without a blue badge. I’m still an embarrassment to my children as I dance around the kitchen… but at least I know there’s another mum somewhere doing the same … isn’t there? Isn’t there?

IMGP0249

My daughter took this photo. Unfortunately it captures me perfectly.

My second family

I don’t know about you, but I’m secretly glad the school holidays are over. Not because I don’t love being with my kids (honest!). And certainly not because I don’t love the occasional lie-ins, opportunistic ice creams, lazy days in the garden and not having to make packed lunches (the smell of Branston Pickle just seems to linger on my fingers all day…). But because I miss my mum friends.

In the holidays, it’s not just school that stops, it’s all the associated activities too. It’s the special needs kids’ group on a Friday morning. It’s a chinwag with the other mums during ballet class or swimming lessons. It’s a smile (and maybe even a hug) at the school gate. With no family nearby, during the holidays I really can go a whole day without having an adult conversation.

My husband is brilliant. He’s my life partner, my biggest helper and best friend. He’s great at fixing things. But he’s not great at feelings. By which I mean, he responds in a perfectly sensible way when I voice my feelings, just not in the way that I want him to. By which I mean, he’s a typical bloke and I’m a typical woman. For feelings, I need my mum friends.

Thank God, then, for SWAN. My second family. SWAN (Syndromes Without A Name) UK is not just a term-time organisation. It’s not just a nine-to-five organisation. It’s a support and a lifeline 24/7, 365 days a year.

Most of SWAN’s members I have never met, am never likely to meet. (One or two I have found do live near us and it has been amazing to meet them and chat like old friends, to get local advice from parents further down this crazy path we’re treading. I treasure their friendship especially). Yet, in a world where mums (and dads) are increasingly isolated, and special needs mums especially so, I really do feel like these virtual strangers-who became acquaintances-who became Facebook friends-who became real friends, have become family. I look forward to the ‘ping’ of a message from them or the ‘bzzz’ of a new post on the secret SWAN group. We share each other’s problems and successes, pain and joy. We egg each other on in wild (half serious) plans to run away to a private island with suitcases of chocolate and gin. When one of us is hurting, genuinely, we all hurt.

My head is full of SWAN stories. Happy stories, sad stories, heart-breaking stories. Stories of love, and loss, of waiting and fearing and fighting and celebrating each and every tiny inchstone our incredible children achieve. Of parents pushed to the brink and sometimes beyond. My heart is burned with images of SWAN children and families. Children smiling, children in hospital. Parents battling and parents buckling. Siblings sharing, families surviving. All people of inspiring strength and beauty. Often when I get a moment to think – perhaps when I’m driving, or when I’m supposed to be writing – I find myself thinking of those SWAN families who are going through tough times, reliving their stories in my head, maybe saying a little prayer that they find some relief.

Haven’t I got enough to worry about with my own family, without getting involved in the cares and concerns of all these other families as well? Absolutely not: because sharing their struggles gives me some much-needed perspective on my own worries, because sharing their fears lets me know that I am not alone, and because sharing and celebrating their successes gives us all a massive boost!

IMG_20170331_203204_914

Us SWAN mums (and SWAN dads – they may be fewer but they are hugely valued), we come from different ends of the country, different cultures, have different political affiliations, religious beliefs, parenting styles and aspirations. Even our SWAN children – the thing that we have in common – themselves may have nothing in common! (Although sometimes it’s tantalising to catch a glimpse of Benjamin in another child and think, just maybe, there’s a hint at an answer there). Perhaps it’s the lack of a shared experience that makes us feel such a, well, such a shared experience. Unlike the parents of children with, say Downs Syndrome, or ASD, or Cerebral Palsy, we’re not lumped together and assumed to have an instant bond. We came together and we built a bond.

If you are the parent of an undiagnosed child, this Friday, Undiagnosed Children’s Day is a great time to come and join us. If you know someone who is the parent of an undiagnosed child, please share this post with them. I’d love to hold your SWAN story in my heart too.

swan_ucd_2017_email_footer_v3-1

**this post was inspired by the SWAN UK April 2017 Instagram challenge (Day 22: Family), which culminates on #undiagnosedchildrensday #UCD17. I hope to write at least one post a week during April to link in with the challenge and to raise awareness of the great work SWAN UK does to support the families of children with ‘Syndromes without a name (SWANs)’. If you know a family with an undiagnosed child, please point them in this direction (https://www.undiagnosed.org.uk/). To donate to SWAN UK you can text SWAN11 £3 (or any amount up to £10) to 70070. Thank you**

Medicine

I thought that schools were getting more secular these days … until every morning of the Easter holidays being woken by my five-year old plaintively asking, ‘Mummy, why did Jesus have to die?’

‘Why do you ask that darling?’ ‘That’s what it said on the Whiteboard.’ The Whiteboard (capital W intentional) seems to be a modern-day oracle. So every morning this week we’ve fished out the Usborne First Bible and read through from the Last Supper to the Crucifixion, Resurrection, Ascension and right through to Pentecost and the coming of the Spirit before she’s happy. Happy that there’s a happy ending. Happy that everything has a reason.

Except, not everything has a reason, a happy ending, or an answer.

It can’t be long now before she moves on from ‘Why did Jesus have to die?’ to ‘Why is Benjamin disabled?’ And there neither my faith nor my science can help her.

DSC_3410

Guinea-pig therapy

April 14th’s theme in the SWAN UK Instagram Photo Challenge is ‘medicine’.

Medicine has done a lot for us, for Benjamin. It has shown us through MRI scans where his brain is malformed. It feeds him when he cannot feed himself. It soothes his tight muscles, prevents his seizures, minimises his reflux, clears his chest and reduces the number of bacterial infections he gets. When he is really poorly, medicine breathes for him. Without medicine, Benjamin undoubtedly would not be here. But medicine does not always have the answers. That’s what unites the members of SWAN (Syndromes Without a Name) UK: for us, medicine does not have all the answers.

Medicine ˈmɛds(ə)n,ˈmɛdɪsɪn/ noun. The science or practice of the diagnosis, treatment, and prevention of disease.

For SWAN children, medicine cannot, in fact, diagnose, treat, or prevent Benjamin’s disease. It cannot answer the question of why he is how he is. Before he was born, it could not tell us whether he would live or die, whether he would suffer or thrive. It still cannot tell us how his disease might progress or how long he will survive.

A couple of years ago, a super-intelligent, professorial geneticist told us he would pull out all the stops and find the genetic cause for Benjamin’s condition. ‘Within six months,’ he predicted. So that we would know more about his prognosis. So that we could estimate how long we might have with him. So we could make an informed decision as to whether to have another child (good job we didn’t wait around for that one). We’re on the DDD (Deciphering Developmental Delay) study. We might soon be put on the ‘100,000 Genomes Project’. I can google lists of symptoms all day long and usually get either ‘we found 4,652 conditions featuring all those symptoms’ or ‘we found 0 conditions featuring all those symptoms’. Both of which are about equally useful really.

Will medicine (or Google) ever provide an answer? Who knows? The DDD study is now printing out results letters daily. A third of those letters contain a probable diagnosis; two-thirds say they have found nothing at all.

When Jackie asks me ‘Why did Jesus have to die?’ I have to admit I skirt around the answer. I don’t think she’s ready to know that we are all sinners, the meaning of atonement and the story of ‘the fall’. But I can skip to the ending and show her the empty tomb, the risen Lord, Easter bunnies and chocolate eggs.

When Jackie asks me ‘Why is Benjamin disabled?’ what will I say? When the box on the DLA form says ‘diagnosis,’ what should I say? When the stranger in the supermarket asks ‘What’s wrong with him?’ What do I say? Thanks to SWAN UK, I know what to say, because when medicine doesn’t have the answers, often SWAN UK does. Through its community of parents who have been there before, SWAN provides the answers and more.

When Jackie asks me ‘Why is Benjamin disabled?’ I can say ‘Not everybody’s genes are the same. Some people develop differently to others. Disabled is not less, it’s just different. Undiagnosed is not less, it’s special.’

When the box on the DLA form says ‘diagnosis’ I will attach a two-page document listing Benjamin’s symptoms, presentation, and the studies that he is on. I will not let ‘undiagnosed’ stand in the way of him getting the help to which he is entitled.

And when the stranger in the supermarket asks ‘What’s wrong with him?’ I will say ‘Nothing. He’s a SWAN. He’s a medical mystery. He’s my miracle. He’s perfect.’

copyright Mat Fascione

© Mat Fascione. Licensed for reuse.

**this post was inspired by the SWAN UK April 2017 Instagram challenge (Day 14), which culminates on #undiagnosedchildrensday #UCD17. I hope to write at least one post a week during April to link in with the challenge and to raise awareness of the great work SWAN UK does to support the families of children with ‘Syndromes without a name (SWANs)’. If you know a family with an undiagnosed child, please point them in this direction (https://www.undiagnosed.org.uk/). To donate to SWAN UK you can text SWAN11 £3 (or any amount up to £10) to 70070. Thank you**

That was then and this is now

One crisp morning when Benjamin was in the Sick Kids I popped out to the corner shop for a sausage roll and a breath of fresh air (shocking, I know, but in my defence Benjamin was asleep and there are only so many egg sandwiches from the WRVS café one can eat). I passed a ground floor flat in one of those lovely Victorian sandstone tenements that characterise Edinburgh’s Marchmont area, with its big sash windows wide open. Music and smoke drifted out and I glimpsed a couple sitting there in their pyjamas, drinking coffee, I imagine easing themselves through the morning hangover. Bloody students. I thought. They’ll get a shock when they enter the real world. For a moment, a part of me wished I could go back to whiling away a weekday morning by a sunny window listening to obscure bands with a cigarette for breakfast.

I shouldn’t begrudge them. Fifteen years ago I was them. I’ve had my turn (all seven years of it) of drinking and dancing, smoking and shagging, of cheesy clubs and late-night lock-ins, stealing traffic cones and setting the world to rights; of trying to find someone, and trying to find myself.

Then, I was scooting around town on my little red motorbike, thinking I was the coolest girl in town.

Now, I’m chugging up and down the A1 in my big red MPV, strewn with used suction catheters, soggy biscuits and baby wipes.

Then, I was up all night climbing scaffolding and dancing to Steps (Oh, the shame).

Now, I’m up all night administering Calpol and cuddles (and occasionally dancing to Steps. Thanks, Radio 2).

Then, I was walking out of my room barefoot in the night and stepping on a slug.

Now, I walk out of my room barefoot in the night and step on a Lego brick.

Then, I was waking up fully clothed in somebody else’s bathtub.

Now, I wake up next to the four people that I love most in the world.

Then, I was researching the genetics of the plant kingdom in the big old musty-smelling library where you still had to complete a paper slip to get books up from the underground stacks.

Now, I am researching rare genetic disorders using Google (and grateful that I did take in something of my genetics courses along the way).

Then, I was slipping and sliding into anorexia because I thought looking skinny and fragile would make people love me.

Now, I am proud of the fact that my body has carried, birthed and fed three babies and that my tummy and boobs are evidence of that.

Then, I was drinking strong coffee just to get through the day until I could have a beer.

Actually, I’m still drinking strong coffee just to get through the day until I can have a beer…

Then, I was campaigning against tuition fees because all my friends were going.

Now, I am campaigning for disabled rights and against our impacts on the environment, because I want my children to live in a better world than this one.

Many things have changed; some things haven’t. I’m still me; still the sum of those experiences and all the things I’ve experienced before and after. I’m still learning, just now I’m learning on the job. I like to think each of those things has prepared me in some way for the most important role I’ll ever have, as Jackie, Benjamin and Caitlin’s mum. There’s still nothing wrong with having a few glasses of wine and putting the world to rights every now and then; it’s even better if you can get up the next morning and do a tiny thing that does make it better, for them.

Then, I was desperately trying to find my place in the world.

Now, I’ve found my place and it’s right here.

 

 

**this post was inspired by the SWAN UK April 2017 Instagram challenge (Day 5 – My morning routine), which culminates on #undiagnosedchildrensday #UCD17. I hope to write at least one post a week during April to link in with the challenge and to raise awareness of the great work SWAN UK does to support the families of children with ‘Syndromes without a name (SWANs)’. If you know a family with an undiagnosed child, please point them in this direction (https://www.undiagnosed.org.uk/). To donate to SWAN UK you can text SWAN11 £3 (or any amount up to £10) to 70070. Thank you**

Bigger, better, bolder

April 29th 2016 is the fourth annual Undiagnosed Children’s Day, and it promises to be bigger than ever. It’s the third UCD since our own undiagnosed child, Benjamin, was born, and only the second since we found out that Undiagnosed Children’s Day and the initiative for undiagnosed children, SWAN UK, existed. A fitting time to look back over the past year and forward to the next.

Bigger…

Many things have changed since our first UCD, not least Benjamin himself. A year ago, he was a frail baby, his 7¼ kilos dropping off the centile charts altogether. Now, he is a strapping, 13½-kilo toddler (can you call him a toddler if he doesn’t toddle?), creeping over the 50th centile.

For this we can mostly thank one big decision: that Benjy should have a gastrostomy. One year ago we were bottle-feeding him high-calorie milk his every waking moment and he was still not gaining weight, strength or energy. Tube-feeding has made a massive difference to all of us. Benjamin is thriving; he has energy to grow, to learn and to love. We have the time and energy to enjoy life and to enjoy him and our other children.

A bigger boy, and a bigger character: he wears trendy glasses (a simple thing that has made a massive difference to Benjamin’s experience and enjoyment of the world, thanks to one insightful consultant who gave his brain the benefit of the doubt and the chance to show what it could do with clearer images to work with), adores nursery school, loves chocolate buttons and Mr Whippy ice cream, and will flirt with anything female.

wp-1460232456413.jpg

Such a charmer!

And it’s not just Benjamin that has grown this past year. Thanks to the supportive and encouraging doctors at the Edinburgh Royal Infirmary, a lot of heart-searching, the thoughts and prayers of many wonderful friends and family (and a small amount of bedtime action), our little family has grown too.

IMGP0418

And baby makes three

With all this growth have come bigger challenges too. Benjamin needs not just bigger clothes, but bigger nappies, a bigger bed, bigger equipment of all kinds. Instead of our nippy little Mountain Buggy we now have a sort of pushchair-wheelchair hybrid that might look like a mainstream buggy but weighs like a tank and handles like a shopping trolley. And it won’t be long before we have to enter the world of hoists, lifts, housing adaptations and WAVs.

The circle of professionals involved in Benjamin’s care also grows ever wider as more and more challenges present themselves. This is a common issue for undiagnosed children – instead of dealing with a single specialist in a known condition, we are sent to a new department for every new symptom. Although we are in the fortunate (and rare) position of having good coordination between most of the services and departments involved in Benjamin’s care, it still results in an awful lot of appointments at an awful lot of different places.

Perhaps the most difficult aspect of Benjamin’s care is the never-ending game of catch-up we play as he repeatedly outgrows the dosages of his many drugs. At its most worrying, failure to increase his epilepsy medication in line with his weight resulted in a three-hour tonic-clonic seizure. If his muscle-relaxant isn’t adequate, he can spend days in a state of constant high tone, fighting against his own muscles, drenched in sweat as if he were running a marathon while lying stationary in his bed. We’re always firefighting, waiting for symptoms to occur before we can increase his doses; where pre-emptive increases based on his weight might save him so much pain.

And, as each year passes, the developmental gap between Benjamin and his peers becomes ever wider. The stares and comments become more frequent, and the opportunities he’ll miss out on more apparent. We can no longer carry his buggy over the bridge to our beautiful beach; it won’t be long before he’s too big to lift into the swings at the play park. Already I can see his experiences becoming more restricted by his physical size and ability. Already he’s being overtaken by his seven-week-old sister in motor skills and communication.

Admittedly, no-one can get over this bridge at high tide...

Admittedly, no-one can get over this bridge at high tide…

Better…

The year has seen big rewards too: developmental ‘inchstones’ of the kind that mean so much for children without a prognosis. Before this year, Benjamin could only smile at people in his direct line of vision; now he has gained the ability to turn towards someone and flash that smile – a new skill to add to his repertoire of flirting techniques. He’s more interactive both inside and outside the home. He loves to go to nursery – his face lights up when he sees his teacher and realises where he is. And he’s slowly learning (largely from the noise) that he now has a little sister.

And at last we’re getting some formal support: family breaks at our wonderful children’s hospice, and agency carers to help put Benjamin to bed some nights. Informally, we find ourselves part of a growing community of friends near and far, real and virtual, with whom we share the experience of special needs parenting and the challenges of being undiagnosed.

Bolder

Every day we spend with Benjamin is a bonus and a joy. Every year that passes, we move further beyond our tentative hopes that he might survive birth, a few weeks, his first two years, … No closer to a diagnosis, no nearer to a prognosis, we journey deeper into the unknown. How long will he live? How will he be cared for if he outlives us? Could his condition be passed on to his siblings’ future children?

The next year will no doubt bring more big challenges, big decisions, and big rewards (as well as more chaos and a whole lot more laundry…). We’ll become eligible to apply for the mobility component of Disability Living Allowance which, if awarded, will fund a car through the Motability Scheme and should make our lives a whole lot easier. Benjamin will take up a three-year-old nursery placement, fifteen hours a week, which will be a big opportunity for him and a big wrench for me. It will also mean I have the capability to increase my working hours considerably – something I’ll have to think carefully about to work out what’s best for our family. And who knows what new medical challenges it will throw up and what developmental feats Benjamin will achieve?

Could the next year bring any more mess?

Could the next year bring any more mess?

For undiagnosed children across the UK it promises to be big year: with the UK’s first specialist nurse for undiagnosed conditions starting work, we hope it will be a year for raising awareness and improving care – particularly coordinated care – for children with undiagnosed conditions. Could it be the year we make SWAN UK’s big ambition – that all families who have a child with a syndrome without a name have the support they need when they need it – a reality?

wp-1460233603579.jpg


SWAN UK wants to make sure that every family of an undiagnosed child has the support they need, when they need it. SWAN provides the only specialist support available in the UK for families of children and young people with undiagnosed genetic conditions. They support families in hospital and at home offering 24/7 support and information.

You can donate to SWAN UK by texting SWAN11 (amount) to 70070; or online at https://www.justgiving.com/swanuk/

Powered by Linky Tools

Click here to enter your link and view this Linky Tools list…

When does rare not mean rare?

When it’s Rare Disease Day! Today, February 29th (the rarest day in the year) is Rare Disease Day 2016. A rare disease is defined by the EU as one that affects fewer than one in 2,000 people. But, add together all those rare diseases and one in 17 people – 3.5 million in the UK – will be affected at some point in their lives.

There are over 6,000 known rare diseases, including genetic diseases and childhood cancers, and goodness-knows how many undiagnosed conditions like Benjamin’s. Rarity and poor rates of diagnosis go hand-in-hand. Often, a diagnosis means very little because there are so few cases of the same disease that even knowing its cause doesn’t help with a treatment or prognosis.

Nearly half of rare disease patients have to wait more than a year for a diagnosis; for one in five, the wait is over five years1

Rare Disease UK is, like its sister organisation SWAN UK for undiagnosed children, an initiative of Genetic Alliance UK. Last year these organisations worked together to set up an All-Party Parliamentary Group of UK MPs on rare, genetic and undiagnosed conditions, chaired by Ben Howlett MP. Their inaugural meeting was held earlier this month, and was addressed by fellow SWAN mummy and star blogger Alison, who explained what it’s actually like to have a child with a rare, undiagnosed condition.

More than one in ten rare disease patients have to attend more than five different clinics for their condition1

In 2013 the Department of Health published a UK Strategy for Rare Diseases, which aims to ensure those affected by rare diseases are informed, listened to and consulted, to develop better methods for identifying, preventing, diagnosing and treating rare disease, and to improve the coordination and personalisation of care for those with rare diseases. Although all four countries of the UK have signed up to the Strategy, Rare Disease UK is still campaigning health departments to implement it.

Thirty percent of rare disease sufferers will die before their fifth birthday2.

In 2017, Birmingham Children’s Hospital plans to open the first Children’s Rare Disease Centre in the UK, providing coordinated care, treatment, support and hope. The centre will cost £3.65 million to build. To support BCH’s Star Appeal, visit their webpage or text STAR to 70800 to donate £5.

Thanks to initiatives like these, rare diseases are no longer completely unheard-of. But many rare disease sufferers still feel that their voices go unheard. The theme of Rare Disease Day this year is ‘Patient voice.’ Today, that voice is shouting a little louder.

rdd-logo

1 http://www.raredisease.org.uk/documents/RDUK-Family-Report.pdf

2 http://www.eurordis.org/sites/default/files/publications/Fact_Sheet_RD.pdf

What should I say? (On your second birthday)

What should I say, Benjamin, that I didn’t say this time last year? What can I report? How have you changed?

I remember the day of your birth so clearly: the turmoil, the fear, the sheer, sheer joy of holding you close and knowing that we had made the right choice. I remember your first birthday: the exhilaration that you had got this far, the promise that you held.

But what should I say, another year on?

So much should happen in the second year of a child’s life. They should start walking. They should start talking. They should learn to feed themselves, to play, even to tantrum. They should… Should.

As the milestones turn into inchstones, and even the inchstones fail to appear, what should I say?

Well…

I should say that you have gained weight, gained strength, gained energy.

I should say that you can see, hear, taste and feel – much more than the doctors say you can.

That you can hold your head up, that you can roll from your back on to your side.

That you have favourite toys, favourite foods, and favourite people.

That you can show recognition, surprise, disgruntlement, and love.

That you have brought us new friends and new opportunities.

That you have taught us patience, perseverance, understanding and gentleness.

That you give my life focus and meaning.

That you are so loving and so very much loved.

That you don’t care about should. That you have come so far this year. That we celebrate you today and every day. Happy birthday, my precious boy.

Benjamin second year