…And then there was Dopey.


Last week my daughter and I sat down to watch the 1937 ‘Snow White and the Seven Dwarves’. She’s going through a bit of a princessy phase so having decided enough was enough of Frozen, we travelled back to the first ever feature-length Disney animation. I hoped I would learn something new, or at least that we would find some good, wholesome messages somewhere in there. A princess who also happens to be a sweet, young girl without ridiculous curves, overdone hair, make-up and unnecessary sparkles. That was enough for me to stick around for a bit.

Anyway, somewhere in the depths of my memory I knew this movie had something to do with Angelman Syndrome. This time last year, when we first started trawling the internet for anything we could find about it, I remember being struck by some fascinating famous facts: Ian Rankin (author) has a son with Angelman Syndrome, Colin Farrell (actor) has a son with Angelman Syndrome and Walt Disney is very likely to have created a character with Angelman Syndrome. Enter the dwarves. Doc, Grumpy, Happy, Sleepy, Bashful, Sneezy… and then there was Dopey. As soon as Dopey came on screen I knew it was him. My ears pricked up, my eyes opened wide and for the next 90 minutes I actively watched a princess movie with my daughter.

Without forcing you to go off and watch the movie yourself (although, if you have a spare hour and a half I do recommend it) here are some of the features that Dopey has in common with our fellow Angelman Syndrome peeps. He smiles A LOT, he is happy the majority of the time, he is a bit wobbly on his feet, he trembles when he goes to hold the candle, he has a seizure in his sleep, he is very affectionate and goes back for several kisses from Snow White near the end, he doesn’t speak, he eats soap, he drools, he flaps his ears when he is excited (note: our children flap their hands and arms, not ears), he is funny and Snow White absolutely ADORES him.

Okay, so Walt Disney’s choice of name for him isn’t the greatest advertisement for Angelman Syndrome, although I do wonder whether the word ‘dopey’ meant the same in 1937 as it does now. However, I think it’s slightly better than the name he had before he settled on Dopey: Seventh. We know that Angelman Syndrome was given its name in 1965 after Dr Harry Angelman and before that it was known as ‘Happy Puppet Syndrome’ so, I wondered if is it possible that Walt Disney or one of the animators knew someone with Happy Puppet Syndrome? If not, how did they create such a perfect depiction of so many of our children?

I guess we may never know but there is one thing that I can take from this movie that pleases me more than anything else. One thing that Walt Disney advocated for way before his time and, with this, almost 80 years later he still swims against the tide of so many so-called ‘professionals’.

Presuming competence.

Whatever your theory is on whether or not Dopey has Angelman Syndrome, I think we would all agree he has special needs of some kind. He comes across as cute, silly and is the butt of several jokes in the film but here’s the important thing: he’s part of a group. Part of a team. He is expected to join in and is involved in everything the dwarves do together. He helps, he works and he is included. He’s as much an integral part of everyday life as any other individual in that little company of men. He was chosen by his creator to be in that troop. And lets face it, his creator could’ve chosen numerous other character names (word has it that names like Awful, Blabby, Dirty, Gloomy, Jaunty, Jumpy and Shifty were in the running) but our little Dopey made it through.

At the end of the film Snow White rides off into the sunset with her Prince Charming and it’s time for the dwarves to say goodbye. They each take their turn – except of course Dopey who has had more than his fair share of turns. He comes back again and again for an extra kiss and cuddle from Snow White and that unmistakeable, overpowering affection that is written in the blueprint of every individual with Angelman Syndrome is right there. That burning desire to be right up close to someone who blatantly adores the socks off you. I saw my boy in that moment and I felt proud that someone just like him was seen by one of the most influential moviemakers of all time as important enough to be chosen to be one of his seven.

When the dwarves introduce themselves to Snow White and she calls them each by name, he is introduced to her by another dwarf.

“This is Dopey. He don’t talk none.” says Happy.

“You mean he can’t talk?” asks Snow White.

“He don’t know. He never tried.” replies Happy.

“That’s too bad.” smiles Snow White.

I love her reaction to this. It’s the equivalent of saying, ‘Oh, well, let’s carry on regardless’.

And so we do. We carry on, we do life, we include, we have high expectations and we presume competence. We absolutely expect that every word, every skill, every opinion, every dream, every wish, every joke, every pleasure, every bit of personality is in there somewhere. We know it’s a challenge to tease it all out, we know it’s a massive undertaking that can only be done with a village of incredible people who are all singing from the same song sheet. We know we will be up against professionals and well-meaning advisors and those who are more experienced than us. We know we will look stark raving mad at times for believing these often unimaginable things about our people. But we do it.

Walt Disney didn’t leave Dopey at home that day. He sent him out, gave him the gift of family and brotherhood, let him love and be loved, genuinely believed he could deliver and then sat back and watched in awe as his sweet little man accomplished each task in his own time and in his own way.

In his own time.

In his own way.


A Syrian Journey… imagined.

Tonight, as I was washing up after dinner, my heart broke. One minute I was singing along to the radio and the next minute I was in floods of tears, adding to the bowl of hot, soapy water. Enough was enough and I had to let it out. I have been taking it all in, listening, reading and watching day after day the horrific events that having been unfolding in our world. I have been praying on my own, at 11am every day, prompted by my phone alarm for the last few days with a few hundred other people who need to do something but don’t know what, so… we pray. I’ve also been praying with my daughter at bedtime. Our usual bedtime prayers are to do with a good night’s sleep, her brother’s health and for a good day tomorrow. Tonight I added into the mix praying for people who don’t have homes and who are going on long, difficult journeys to find a place where they are safe. Basically, the Syrian refugee crisis simplified into 3-year-old terms. Obviously, I didn’t want to go into detail about what’s going on as telling a 3-year-old horror stories before bedtime is asking for nightmares that night. As her parent, I need to protect her. She doesn’t need to know these kind of things just yet. 

It then dawned on me that the photo I had seen today of a dead boy who had been washed up on the shore in Turkey was of a 3-year-old. A 3-year-old just like my daughter whose parents, like me, were just trying to protect him. 

So, as I cried, I pictured me and my girl on a journey. I tried, with the knowledge I have from the media, to imagine us leaving from our temporary home in Turkey, packing our bags (if we even had time) and talking about where we were going. To imagine her being born into this horrific world having heard the sound of gunshot in my womb but I would fill her with hope that we would be going somewhere brighter, better, safer and quieter where she could have fun, play outside with other children and maybe even go to a school where children speak a different language to her. I would reassure her that she would be absolutely fine on this journey because we would be sticking together and, with me, she’s always safe. I would make sure she took her favourite toy and remind her that she mustn’t lose it because there would be no going back. I would say to her that there would probably be lots of us going together and it would be busy, there would be times when we might get a bit tired but I would carry her some of the way. I would let her fall asleep on my shoulder during those times and stroke her hair, just like I always did so that she had a bit of ‘normal’ in the craziness of it all. I would make sure she knew she had to eat well whenever we stopped for food because it might be a long time before we ate again. I would try my very hardest to remain calm, upbeat and happy so that she wouldn’t sense my complete fear, loss of control and total uncertainty that we would even make it. I would tell her how much fun it would be journeying from one place to the next, listening to people speaking in different languages, seeing how they dressed differently. I would explain that the first bit of the journey was an exciting ride in a boat.

I would queue up, holding her hand tightly, talking with her about all the things we will do when we get ‘there’ and we would watch as the others got on board, giggling together as the boat wobbled and people nearly fell over trying to sit down. We would step on and I’d look at her with a big grin and say, “This is it! We’re really doing it!” and we would talk about how long it would take. She would probably talk about which creatures we might see in the water on our way and she would joke and say, “I hope everyone can swim in case a shark tries to get us!”. We would set off and chat with the others on board when we felt like chatting and the rest of the time we would cuddle and look out to sea. 

Then we would both sense it. Me before her but she would be so used to the sound of fear creeping into my chatty voice it wouldn’t take her long. I would hold her tightly as the boat started filling up with water and people around us began panicking as the waves crashed over the top of us. She would cry and scream, telling me she didn’t like it anymore and wrap her arms around my neck and her legs around my waist. I wouldn’t be able to keep upbeat anymore in our conversation, I would just tell her over and over again, “It’s okay, I’ve got you, you’re safe with me. Just hold on and we’ll be okay. I can swim. It’s okay.” I would be wishing that we were in a better boat, one of the bigger ones, or that we had set out when the sea was calmer, or that I had given her swimming lessons, or that we weren’t born into the lives we were born into. We would run out of time and suddenly we would be neck deep in the sea, clinging onto each other in the freezing cold ocean. I would start to lose feeling in my feet and my legs, I would feel so exhausted but know that I just needed to keep moving, keep swimming, but which way? We had hardly been in the boat that long. I would struggle to keep her above the water whilst keeping on swimming and would notice her little lips start to go blue so I would know we needed to move quickly. But my energy, where would my energy come from? She wouldn’t be talking now, she would just look at me, fix me with a glare with those big, round eyes and not look away. 

And that would be it. Something would happen, in that moment where our eyes were fixed on each other, where every bit of trust we had ever built up from day one, where every promise I had told her was sealed away in her memory, I would lose her. Just like that. 

And he was lost.

Just like that.

3 years of life, a lifetime of possibilities ahead, gone in a final, desperate attempt to find him a better life. 

We will never know exactly how that little boy drowned, the conversations between him, his mother, his brother (both of whom also drowned on that boat) and his father who survived. We cannot begin to imagine the panic and the utter fear they all felt. However, we can imagine exactly what his parents tried and ultimately failed to do: To keep him safe, to give him hope for a brighter future and to reassure him they would all be fine. 

That’s what we all do, right? 

I am able to protect my daughter from knowing about this horrendous story and I have the ability to keep her ears and eyes away from something that I think may worry her and cause unnecessary anxiety in her. His parents had no choice. This story was their reality.  

Let’s please not allow this little boy’s fateful journey to be forgotten. There will be so many more children putting their trust in their parents as they set out, right now as you read this, believing that they are really going to make it, stepping into tiny boats, squeezing themselves into hideously packed vans and lorries, holding on tightly to their parents who have promised them safety. 

Trying to imagine their journey was surprisingly easy. I have never experienced anything like what I think that little boy and his family went through but the thing that made it easy was simple: We are all humans and 3-year-olds are not that different to each other. They all love a journey and most of them completely and utterly trust their parents will keep them safe. We are humans reading about, watching or listening to people tell us about other humans in a different part of the world, doing things we are pretty certain we’ll never have to do in a million years. 

We are not that different. We were just born under a different set of circumstances. It could have been any of us.


Slowing Down

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Being a parent to a child with disabilities can cause you to feel the need to DO things for them and with them all the time because they need extra help, they need extra experiences, basically they need more because the assumption is that they have less to start with. I have often felt overwhelmed with all of the extras we need to put into place to provide Rufus with a full picture of life skills and experiences. We have therapies, appointments, groups, toys and pieces of equipment to attempt to fill in the gaps. Of course we do our best to provide both children with everything they need to live a full life but providing my non-disabled daughter with these things just feels like nothing more than bringing up a child. The things we do for her and with her are essentially the building blocks to help her become the adult human she will be one day. I take her to the park and that ticks the fresh air and exercise box. I take her to a playgroup and that ticks the socialising box. I take her to a play date and that ticks the building relationships box. I take her to nursery and that ticks the learning box. I take her to soft play (yuck, I hate those places with a passion) and that ticks the climbing, mastering heights and fun box. You get the picture. Every experience ticks a box. We go through our days with kids feeling like we have this need to do something, at least one thing a day, that ticks a ‘developing the person’ box. That way, we feel we are winning at the parenting game. 

Recently, I have made it my goal to try out every multi-sensory play room in my local area. I decided to find the best multi-sensory room so that when my daughter goes to pre-school in September, Rufus and I will go on a weekly basis and that will be one of our ‘things’ that we do together, just us. I have known for a while that sensory play is good for babies and people with disabilities but I’ve never really thought about why. I went a couple of times to a local place when my daughter was a baby and thought it was a cool place to hang out but having such a grumpy baby to start with meant that she never really ‘chilled out’ like my other mum-friends’ babies did. I think I had visions of Rufus bum-shuffling all over sensory play rooms, getting loads of exercise and practising physio exercises. I wasn’t expecting what actually happened. 






Rufus is capable of moving around a room now to investigate things that interest him and at home moves very quickly from one thing to the next but this is not what happens in multi-sensory rooms. He just sits or lies back and takes it all in. Against all of my mothering instincts of doing things for and with him, I have to let him lead on this one. The time we spend in these rooms are not for me to lead him or play with him or coax him into doing something that will develop his skills but for him to just be. And that’s really hard for me. But it’s so, so good for him to just sit back and be awed by bubbles in coloured water, twinkly lights, projectors, fibre optic sprays and mirror balls. 

It’s so good to just stop, sit back and allow ourselves to be in awe of something, anything, just for a little while. Not to take a photo, say anything profound or do anything about it but just to simply take it in. 

I don’t think I do this enough. Hmm, I’ll have to DO something about that. 

Watching him being completely mesmerised by something never fails to fascinate me probably because it stops me in my tracks seeing my normally busy little boy sitting still and looking so intently at just one thing. Long before we started going to multi-sensory rooms I started noticing the kind of things that float Rufus’s boat and grab his attention. He loves looking at leaves on trees swaying in the breeze, the raindrops forming on windows, shadows moving on walls, light reflecting on different surfaces, seeing the world through a different coloured sheet of plastic and himself in a mirror. These are simple, natural things that he finds interesting and enjoyable and they are going on all the time (well, the rain, the shadows and the wind certainly are where we live) and I’m just missing them because I’m trying to create all these scenarios and learning opportunities for him. 

I heard a good quote today: ‘We make the weather for our children’. I know the guy who said it was talking more about how positive or negative parenting can impact children’s mental health but when I heard it I thought of Rufus. I think for a lot of children with disabilities like Rufus, the weather is often stormy, changeable and unpredictable even when we are creating fun, organised activities for them to enjoy. I think the very fact that they are doing yet another day in their bodies which often let them down or don’t feel right, with thoughts that just don’t come out as words and feelings which get increasingly frustrating as people keep trying and failing to understand them can feel like a crazy weather day, all day. Perhaps when Rufus is staring intently at the leaves moving on trees or the bubbles dancing around in the light tube he is trying to create for himself a little pocket of calm weather. He’s opting out of the activities, the physio and the constant ‘doing’ and he is choosing to just be. 

So in our busy weeks of activities, play dates, therapies, appointments and playgroups we will most definitely plan in trips to multi-sensory rooms to stare at bubble tubes and twinkly lights but more importantly we will plan in time to stare out of the window at the rain, sit under trees on a windy day and look at ourselves in mirrors. 

I’ll let you lead on this one, my boy. It’s time we started slowing down.

Angelman Syndrome: The Potential To Be The Making Of Us

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“The last thing we want to do is to make you feel like you stand out,” she said.

“Oh, it’s okay, I do anyway. We do. I mean, we always will. That’s part of the deal with having Angelman Syndrome.”

Standing out. 

This week has been a week of feeling, well, different to the rest of the mums. Of being acutely aware that Rufus is different to the rest of the toddlers we hang out with. Of feeling like we stand out and wishing, just for a second, like we could blend in and not be noticed.

I realised early on in life that I stood out from the crowd. I have curly hair. Not a big deal in some places but in the town where I was raised, at the primary school I attended, I was literally the only person in my class with curly hair. And I mean super-curly Italian hair. My mum used to say how everyone admired my hair when I was little. I now realise it was mostly old ladies who wished their hairdressers could make their wash and sets look like mine. One of my primary school teachers wrote me into a class play as a victim of bullying and came up with the idea of the bully calling me ‘Vileda Supermop’. Brilliant idea. Guess what all the boys called me for the rest of the year? At secondary school my chances of blending in didn’t get any better. Within the huge secondary school I attended there was only one other girl with super-curly hair in my year group and she lived on the other side of town so she had the kind of mates that meant you wouldn’t mention her hair let alone bully her about it. So little old me was the brunt of all the curly hair jokes. Microphone-head; ’testing, one two, one two’ with a succession of fierce pats on the head; Afro (yes, I grew up in a pretty much all-white town so they thought this was funny); Pube-head; you name it, my hair and I got it. Being pushed into the holly bushes on the way to school or having your head flushed down the toilet were two of the things everyone dreaded the bullies doing at my school. Thankfully neither of these happened to me but having the Head of Year’s son spit in my hair on the way home from school was a pretty low point. So, you get the picture, I really didn’t blend into my surroundings. Of course as a teenager this was pretty devastating so I did everything I could to change my hair so I could just blend in: straightening it, chemically relaxing it, using every curly-haired product under the sun to tame it, braiding it, putting it in such a tight bun on the top of my head that I hoped nobody would notice it, cutting it short and having a reverse perm, growing it long in the hope that the curls would grow out. Despite all my efforts, it kept growing back curly and it seemed there was nothing I could do to stop it.

Maybe I grew tired of trying or maybe I just grew up. Whatever it was, one day I just decided I would fully embrace my curliness. And I’m glad I did. 

Fast forward to present day and I live in a vibrant, diverse community within a huge and creative city where having curly hair is completely normal and no-one really stands out from the crowd for the way they look because there are so many versions of ‘normal’ that no-one really looks twice at anyone. Finally, curly-haired me blends into the crowd. So I go about my day doing normal things, going to the park with the kids, blending in, not being noticed. But, the thing is, recently I have noticed that old, familiar feeling of being desperate to blend in creeping back in. Of course, it has nothing to do with the way I look anymore. It’s about the boy I spend all my time with and the increasingly obvious Syndrome he carries around with him. 

When Angelman Syndrome officially entered our lives 9 months ago, blending in ceased being an option. Life became about standing out, feeling different, unusual, learning to adapt to surroundings or to activities, about encountering new people who wanted to know about Rufus, having the pity-looks, the questions and then The Conversation (explaining the ins and outs of the Syndrome and what the future holds for him). There is no more blending in now.  

On Monday morning I got in the car after Rufus’s very first trial swimming lesson and felt a big old lump in my throat. After several conversations back and forth with the lesson provider about which age swimming group would be right for Rufus, the swimming company verifying with ASSERT UK that Rufus (with his condition) would be safe in the water and finalising the details, we braced ourselves and turned up at the group. Separately from one another, the instructor and I realised very early on into the lesson that the group wasn’t right for Rufus. Not only did his tiny, wobbly body look so different to the other normal-sized boys who were also nearly 2 years old, they could all follow instructions, walk, talk and were beginning to move towards independence in the water. Don’t get me wrong, Rufus had a wonderful time in the water. He loved it. His continual beams, giggles and face grabs reassured me that he was having the time of his life. I mean, anyone who knows anything about Angelman Syndrome knows that water is a winner every time. But really, whatever the teacher was trying to get him to achieve, he wasn’t even remotely interested. So at the end of the lesson, as we started making our way out of the water she said, 

“Just hold on, I’d like a quick chat after everyone’s gone,”

Of course, like any parent who is grabbed by the teacher in the playground at the end of the day, I knew he’d done something wrong. 

And it was then that she explained that she felt it was right to put him into the lower group, the group for 6-18 month olds. He’s 21 months old. Her reasons were absolutely valid, I agreed with everything she said, in fact, I would have suggested it if she hadn’t but the fact was he was being demoted. He couldn’t follow instructions and wasn’t anywhere near moving towards independence in the water. And I felt sad. I felt sad for my boy that he stood out and he wasn’t like the other boys. I think she could see that and so that’s when she said,

“The last thing we want to do is to make you feel like you stand out,”

So I explained away my feelings and responded with, 

“Oh, it’s okay, I do anyway. We do. I mean, we always will. That’s part of the deal with having Angelman Syndrome.”

As I look back over the events of this week I realise that my ’normal’ is actually quite unusual for most mums. I guess when I said to the swimming instructor that standing out is ‘part of the deal with having Angelman Syndrome’ I meant that everything ‘normal’ we try to do will always look different to how I imagined it should look. To give you an idea, here’s how the rest of my ‘normal’ week looked after swimming: Phoning his paediatrician for a new prescription; racing across town to collect the prescription in time because I knew the medication was something they would have to order in; collecting his sister from pre-school and meeting a mum at picking up time who asked his age as I held him in my arms and looked at me strangely when I responded with 21 months; meeting with a health visitor and sleep specialist to discuss how to move forward in his sleep plan; racing across town again to deliver the prescription to the pharmacy so we can get the sleep medication he so desperately needs in order to function normally as a family the next day; being kept awake by him for 2-3 hours every night this week for no apparent reason other than he has a sleep disorder; meeting with a Speech Therapist for the first of 6 pre-language play sessions; collecting the prescription; buying shoes and realising that his feet are too big for ‘pram shoes’ but feeling annoyed that there’s no point in spending loads of money on proper shoes when he’s not even walking; having The Conversation with a lady in the park and tripping over my words trying to explain why he’s not walking and talking like her daughter who is exactly the same age; being seconds away from calling 999 as he started going blue from choking on a piece of pear.  

And that’s part of the deal with having Angelman Syndrome. Every single day we have these stand-out moments that I know are regular Angelman Syndrome moments which most of my friends are not experiencing. I know we are different and I know this is the way our lives are now but how, for a second, I just wish we could blend in and have regular toddler moments sometimes and have those normal conversations comparing the mundane and ridiculous with other toddler mums. How I wish I could go to a swimming lesson and watch my son follow instructions like the other boys and show signs that one day he, too, would learn to swim. How I wish that his paediatrician’s phone number was not one of my most frequent calls this week and that I could experience a regular toddler meltdown whilst shoe shopping. But wishing will get me nowhere. Wishing to change something in our genes is pointless. It’s in our genes. I should know, having spent half my life wishing to change my curly hair. If I could’ve told my young self, so desperate to look like everyone else and to blend into the crowd that one day not only would I love my hair, I would actually see it as a trademark look that I would never want to change, I wouldn’t have believed me. The thing about my appearance that I was most desperate to change; the reason I was bullied, is now the thing about my appearance with which I am most happy. The battle is over, the curls have won. Untamed, unkempt and more often than not, unwashed. 

As I find myself fighting this internal battle right now about wanting Rufus and I to blend in when we are out and about, wishing to appear normal and trying to avoid eye contact with strangers, but also wanting to stand out and tell the world how great he is and to teach everyone I meet about life with Angelman Syndrome, I wonder what the future me would say. Perhaps she would say that when this battle is finally won, it has the potential to be the making of us.  

Rufus is absolutely pleased as punch to be the person he is right now. He’s here in the world doing life and living it to the full and as far as I can tell by the ear-to-ear grins he gives us day in, day out, he doesn’t wish to be any different. He actively seeks out complete strangers to smile and giggle at. Today, in a supermarket he knew exactly which members of staff needed to lighten up and when a smile wasn’t enough to make them crack, he giggled. He soon changed the atmosphere. If I’m going to learn from anyone about how to feel comfortable standing out in a crowd, I’ll learn from him. But I think I owe it to him to do better than just feel comfortable. I need to learn how to feel proud to be his mum in every situation, in every encounter with a stranger, every time I receive a pity-look and particularly every time I so desperately feel like I want us to blend in. I need him to help me to wear my Angelman Syndrome Mum badge with pride and feel completely at peace with the way I am, the way we are and the way we’ll always be. And maybe, if I let him, this could just be the making of us. 

Lost, found and waiting


1st June 2015 came and went. Tonight I write about what should’ve been happening yesterday. It should’ve been a day to celebrate a 4th birthday party. This time 4 years ago, 1st June 2011, was the most important date on our family’s calendar that year. It was the due date of our first baby. But due date came and went without a baby. The baby wasn’t late, it just didn’t come. 11 weeks into that precious first pregnancy I had the most horrific experience of my life and lost the baby. In fact, it had already died in my body 5 weeks earlier but my body took a while to really give up on it. It’s what’s called a ‘missed miscarriage’. It’s a memory that I can’t fully shake and I still get the occasional flashback of discovering the bed sheets soaked in blood, lying unconscious on the living room floor, being put in an ambulance at crazy o’clock in the morning by two jolly paramedics who had just started their shift. I don’t think those kind of memories ever really go because they’re the kind of experiences that shock you to the core. 

So we should have a 4 year old now but we don’t. Instead we have a 3 and a bit year old and a 1 and a half year old. Our lives are full right now. Full of joy and happiness and I sincerely mean that. Most of the time it’s easy to forget the emptiness I felt during the weeks and months after we lost our baby. I still have a card written by a beautiful lady called Zoe just a few weeks after the miscarriage. In it she writes,

‘Although it doesn’t seem like it to us, our time here on earth is fleeting and for all eternity you will know and love this beautiful child that you’ve been unable to see right now … Our Lord is a faithful God and I pray and believe he will give you more children not in place of, but in addition to the baby He now has in Heaven’

She had faith to believe there would be more children at a time when, in all honesty, I couldn’t get over the cruelty and unfairness that the only child I did in fact really long for and want was the one that had been taken from me. She believed that I would meet that baby one day in Heaven. No one else had really said that to me in such plain words and I think that was the one idea that I really clung to for a long time afterwards. 

4 years on and a lot of reflecting later and I am still just as dumbfounded as to why God chose to take our first baby. I could come to a number of conclusions but I just haven’t. All I can really do is believe that God took over the growing, nurturing and loving of that tiny soul the second he took it from my body, gave it a new body and is having a whale of a time up in Heaven with my 4 year old. I don’t have to believe this but I choose to because I believe God is good. Complicated, but ultimately, GOOD. I know it’s at this point I divide my readership but remember it’s my story, not yours.

So, to the mummies who have children who were taken too soon, here are my thoughts:

I hope you don’t feel like it happened because you were a bad person, you did something wrong or you wouldn’t have been a good enough mummy right then. You would’ve been good. You would’ve been SO good to those babies. You may or may not have had the chance to know yourself as ‘mummy’ prior to or since but don’t let yourself forget the bond you felt during those pregnancies and the bond you most certainly would’ve had in life, now. I know you remember the miscarriage dates and the due dates just like me. I know you think about what he or she would’ve been like now. I know it looks from the outside like you’re ‘over it’ but there’s a part of you, big or small, that really isn’t and that’s okay. Because you’d be weird to be completely okay, right? I imagine, as straightforward or horrific as your experiences were you still get flashbacks because every bit of what you went through was downright wrong. But I hope you had a Zoe around you at the time who was able to inject a tiny bit of hope into your life that your baby is not lost from you forever, just for now while you’re here on Earth. Not lost. Just lost to us. Right now. If that’s a new idea, or one that you’ve dismissed as whimsical and airy-fairy, just stop for a minute and imagine your babies.

Found. Safe. Doing well. Growing. Waiting. Waiting for you.

I know, I know, it’s just an idea, a belief and really, we won’t know-know until we get there but, still, I’m clinging on to this idea 4 years later and, when it’s right, I look forward to telling my Earth babies all about their loved, lost and found big brother or sister who is waiting, patiently, to meet them.   

Fiercely Proud


Rufus is roughly 19 months old. 19 months ago Betsy, who is now 3 and a bit, was also roughly 19 months old.

I say roughly because no-one is really interested in the exact details, and the exact details are not the point. The point isn’t even about how crazy we were to have such a small age gap between our children. It isn’t even about how I couldn’t imagine having a newborn baby now with a 19 month old (let’s face it, the whole thing was a MASSIVE blur). The point is that I was looking through the videos I have on my phone a few days ago and was reminded of what Rufus could be like now if all of his chromosomes were intact.

I have a video on my phone which I have hovered over deleting many times but somehow can’t. It lasts exactly 1:05 minutes long. It’s nothing Facebook-worthy, nothing particularly special but it captures a little moment of calm in the crazy early days of having two under two. Rufus is sleeping peacefully in his Moses basket in the lounge, the TV is hooked up to a YouTube playlist of animated nursery rhymes (something which maintained everyone’s sanity back then) and Twinkle Twinkle Little Star comes on. Betsy, standing in front of the TV, holding ‘Bunny’ (her life-long best friend) begins to twirl around, sing along and then, as toddlers do, loses interest and comes over to her sleeping brother. She looks at him, says ‘Hi Ru’ and looks at me and says, ‘Milk?’ (suggesting perhaps that’s what he needs) then places Bunny on him and begins to stroke him then after a while says, ‘Ru Bunny’. That’s it. Like I said, nothing special.

But right now, it feels like this video couldn’t be more of a kick in the face to remind me of everything Rufus isn’t and everything he can’t (and may never) do.

There’s a split second when the camera captures a tiny sleeping Rufus, who was only days old at the time and I am reminded of the months and months of blissful ignorance before we began to suspect something was wrong.

There’s a toddler who can stand up, on her own two feet, holding on to nothing yet feeling completely at one with herself and gravity.

There’s a toddler who has an attachment to an object which gives her comfort and helps her to sleep through the night.

There’s a toddler who knows and remembers a song, has perfect pitch (yes, I know this is not necessarily a ‘normal’ toddler thing) and can sing along.

There’s a toddler who enjoys spinning around, recognises when she gets dizzy and holds on to the sofa to steady herself.

There’s a toddler who can say her baby brother’s name.

There’s a toddler who knows how to be gentle with a newborn baby and understands that newborn babies need milk.

19 months ago, I took each of these things for granted and probably assumed I would have something similar going on again but with a 3 year old in tow. How wrong.

Rufus, right now, can do none of the above.

Yet there’s so much he can do and there’s so much I am fiercely proud of him for achieving so far. He may not be able to stand, sing, spin around, say his name and interact appropriately with a newborn baby but you should see the effort he puts into reaching for toys. You should see the way he can eat finger food by himself, drink from a sippy cup, put weight through his legs and roll over from front to back and back to front. You should see how excited he gets when he sees someone he loves and reaches out for them. You should see how he has very recently begun putting weight through his arms when we place him in a crawling position. You should see him do a 360 degree bum-shuffle on the carpet.

You should see him smile.

The other day I was thinking about the number of smiles exchanged in our family on any given day. I would put money on our family smiling more than any other family I know right now. There’s something special about Rufus’s condition, Angelman Syndrome, which is the best bit by far. Weirdly, it brings all the smiles out. It’s as though he was born without a joy-filter. It’s like every time he gets even vaguely excited about something, his whole body goes into super-happy mode and his face has to release the biggest smile it possibly can to demonstrate just what he would say, in words, if he could. And because of that, we smile back at him. And the smiles aren’t just big, they’re huge. And because of that, he makes us feel happy.

We have so much we could feel sad about because there’s so much lacking but when there’s a small person who spends most of every day being ridiculously happy in your presence, it’s pretty difficult to feel sad.

I wonder sometimes as I work on his daily physio exercises if his feet will ever know what they need to do when they’re on the ground to help him balance himself. I wonder at mealtimes if there’ll ever be another way for him to tell us he wants more than just banging on the highchair. I wonder in the middle of the night how old he’ll be when I give him his last bottle of milk. I wonder, most days when I get close up to him and whisper ‘Mama’, if I’ll ever hear it back. I don’t wonder so much these days about regular toddler milestones, I just wonder about the next thing for him, to help him, to make his life better, easier, more enjoyable and full.

Looking at that video is bitter-sweet. I love to see my sweet girl just being a care-free little 19 month old toddler and my sweet newborn boy just… sleeping. Yet it’s still a kick in the face.

Like when I see your ten month old effortlessly crawling away from you. Like when I see your one year old eating an apple and you’re not even watching to make sure they’re not choking. Like when you complain about how your toddler is never still. Like when you say there’s never a moment’s peace now your baby has found their voice. Like when you talk about how convenient having a September baby will be when they start school. Like when I see your toddler playing, yes actually playing, with their older sibling. Like when I notice your eleven month old is wearing proper shoes because they’re now officially cruising. Every time, it’s a kick in the face. I’m really happy for you, honestly, I am, but please don’t let me hear you complain about your walking, talking child. Please remember that I long for those normal, boring, everyday things. And I know, ahead of us, there’s a life full of moments like that and the gap will never, ever close, it will only get bigger. I know it will still hurt like hell to watch and listen to stories of your children’s great achievements in life but I will try to celebrate with you, I really will.

As I look at that split second shot of a sleeping Rufus, only days old, I have to remember how helpless, dependent and reliant he was as a newborn baby and how far he’s come. Yes he may not have come as far as Betsy and as far as your babies and toddlers but he’s certainly not the newborn baby he was back then.

I like to imagine him holding on tightly to a secret that only he knew which would be revealed to us 14 months later and change our lives forever. He let us love him, get to know him and cherish him in those 14 months before he became ‘Rufus with Angelman Syndrome’. And I can only imagine what tricks, skills and achievements he’s keeping a secret now. And if he could talk, he’d tell me not to compare, not to worry, not to wish and long for him to be any different… but to be proud.

Be fiercely proud.

Bringing something to the table

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Processed with VSCOcam with x4 preset

I’ve been thinking a lot recently about the value of Rufus in the eyes of society.

In my eyes, his value is inestimable, I mean, he’s my son… It’s a no-brainer. I just have these little moments when I have a sneaky look into the made-up future I’ve created for him and see Rufus as a child, a teenager and a man and I just feel sad. Not because of how I will look at him, but because of how I think the world will look at him. Maybe because there’s a small part of me who, in the past, looked at older people with special needs like Rufus and just didn’t get it. Until now.

Let me explain. Anyone who has had children has hoped that they’ll go to school, learn, achieve and succeed, fly the nest and prove their worth or value in society by bringing something to the table. That ‘something’ could be as simple as being a good person and role model to others, volunteering for a worthwhile cause, having a steady job, being a parent, writing a book, being creative, being clever, earning tons of money, teaching… any kind of useful contribution just as long as it’s something that adds to society.

Anything that brings something to the table.

Because we all know someone who has an opinion about those who take from the table.

Those who drain our resources.

Those who don’t help themselves.

Those who don’t do anything useful.

Those for whom we pay taxes so they can sit about having a jolly old time.

Those who we have to look after for that bit longer than we think is right or necessary.

And I worry that, because Rufus won’t be able to bring anything like that to the table, no-one will see how valuable he really is. Every bit of me wants to tell everyone I meet just how great he is, what he can do, how he makes me feel, what he teaches me every day about love, how he challenges me and is making me into a better person. I mean, I write a blog about him. That’s how ace I think he is. Betsy doesn’t get a blog about her. Of course I love them in equal measures but the difference is, she can show the world just how great she is. I don’t have to worry about her. She’ll walk into a room and make people like her and notice her and recognise her qualities because she has a voice and she has an incredible, loveable personality and she’ll go places. She’ll bring something to the table. That, I’m pretty sure of.

Rufus doesn’t have a voice. Yet.

Rufus can’t walk into a room. Yet.

But when he does, what will they think of the voice and the man that they see and hear?

I worry that people will look at him and feel sorry. Feel sad. Feel, ultimately, that something is missing. Something is lacking. Something went badly wrong.

I believe that God made Rufus exactly how he wanted him to be. I don’t think God made a mistake. I don’t think God was working on the chromosomes bit and got distracted, looked away for a second and then, whoops, missed out a whopping great chunk of Chromosome 15 then realised it was too late but thought, oh well, he’ll get by. I think God left it out on purpose. I know there are people who’ll disagree with me, who’ll have different viewpoints on all of this but, hey, we’ll find out one day so let’s not get hung up on it now. Anyway, the point is, I believe that Rufus was born with Angelman Syndrome so that he could bring something a bit different to the table. If you’re in ‘the village’ then you’ll know what I mean. Your eyes are open to Rufus. Okay, so he won’t get a job, be a dad, earn loads of money etc etc etc. Society won’t look at him and say ‘Thank you, we couldn’t have managed without you.’ He will require a lot of people to just get by each day and I guess some people may see that as a drain on resources, not helping himself, sitting back and having a jolly old time, expecting others to help him. How is that valuable? How is that worthwhile?

Exactly what does Rufus bring to the table? Well, I hope that, in spending time with him, with us as a family, by reading my blog, you will begin to realise the same inestimable value I have found in him. For me, personally, Rufus flipped the table upside down the day he was diagnosed. The table is irrelevant. The table is too small. We’re feasting on the floor now. Feasting on these values: joy, happiness, love, family, trust, silliness, friendship, cuddles, sloppy kisses, hope, excitement, togetherness. Before Rufus came along I had never experienced those ‘values’ (let’s call them) so fiercely and unconditionally and the great thing is, he spreads them wherever he goes. He locks eyes with the most depressed-looking individual in a supermarket and gives them the most beautiful, heart-warming, ear-to-ear grin (because he thinks they’re a friend). He finds himself next to a complete random in a crowd and reaches out with both arms to cuddle them (because there’s no doubt in his mind that everyone is on his side). He is in my arms in a queue and puts his hand on the back of the person in front and gently touches them (because touch is his way of saying hello). He creates the most brilliant awkward moments for me with complete strangers and always brings an extra dollop of love to absolutely anyone, just when it’s needed.

And I’m pretty certain that’s exactly why he’s here.

Rufus’s Village

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I am overwhelmingly aware at the moment that we are not alone in bringing up Rufus. 

There is an African proverb that says ‘it takes a village to raise a child’. I love this proverb but I don’t think I’ve been that great in the past at acting on it. I’ve always liked to think I can raise my children by myself, thank you very much, with the help of my husband and close family. That’s what most people do, right? Friends offer help but, really, how many people actually mean it? Surely I can manage. Surely I have two very capable hands, a husband who does night feeds and nappy changes and, hey, I’m a teacher so surely I know exactly how to do this parenting lark. Right? Yes, in a way. I am blessed with two fabulous parents of my own who not only did a good job of parenting but are also doing an awesome job of grand-parenting. I have a degree in Primary Education and 8 years worth of experience in working out how children learn and what makes them click. I feel like parenting comes quite naturally to me and I love nothing more than a cuddle with a newborn or a conversation with a loopy toddler. I’m prepped, qualified and perfectly capable of doing this thing. I have layers upon layers upon layers of coping mechanisms. I’m sorted. 

I know that, as a couple, we have the means to cope with what we have right now: A wild, wilful and wonderful 3 year old daughter and an almost 1.5 year old son with Angelman Syndrome, who right now, in many ways is one of the easiest nearly 1.5 year olds I know. But he comes with a label and this changes everything. We are suddenly bombarded with offers of support in various different forms and coming at us from all directions. That’s certainly how it feels and, in all honestly as a ‘coper’, it feels a bit uncomfortable.  

Pre-Angelman Syndrome diagnosis, if we had wanted, we could have chosen to do this parenting thing alone in whatever way, shape or form we wanted. We could have gone to live in the middle of nowhere to do life as a family of 4… or 5… or whatever we end up being, but Rufus has changed that. I don’t mean to say Rufus has forced us into a corner and limited our options by being born with Angelman Syndrome. Instead he has brought us out into the wide open. 

We have recently started receiving a whole lot of paperwork and money and a big hug from the government for having a son with Angelman Syndrome. This feels a bit weird. They don’t owe us anything. It almost feels like a sympathetic sorry-you-ended-up-with-a-faulty-one,-we-can’t-send-him-back-so-we’ll-give-you-some-compensation-instead pat on the back. Until we started filling in these forms we had no idea about any of this. You see, every local authority is legally bound to provide support in the form of respite for carers of disabled children. Of course we don’t have to accept this offer but, without boring you with a whole lot of social care duties, duties to disabled children and human rights obligations (this blog post explains it properly https://rightsinreality.wordpress.com/2014/09/15/short-breaks-for-family-carers-when-enough-is-enough/), as parents of Rufus, the law requires the state to support us. 

Legally, we MUST be supported. 

As a stubborn coper, this is a hard pill to swallow. As a mummy to a gorgeous, happy, chilled-out little boy, who barely cries, I sometimes find it hard to believe all this is really necessary. Right now, there are times when I feel like Rufus is ‘normal’. Then I remember the various medications he’s on, I receive a letter in the post from one of the 9 different medical professionals already involved in his little life and I am reminded that we are barely on the first rung of a very tall ladder. I fill in a form to request funding for a carer to help us look after Rufus and realise that the government doesn’t require or expect us, as a couple, to bring up Rufus on our own. Gulp.

We are not on our own.

Aside from legal requirements, the overwhelmingly big hug has come from our ‘village’. If you are in our village then, right now, we are feeling so squished by your love that we can barely breathe. We have always liked to think that we have a pretty awesome group of friends and family dotted all over the place but since Rufus and his diagnosis came on the scene it is blatantly obvious exactly where the love is. From our blog readers, to friends we have cried with, to anonymous people who have put money through our door, to people who wear our t-shirts (hubs writes pretty well too and has some awesome fundraising tees on his blog http://www.fathertoanangel.org/merch/) to people who we have befriended (whether they’ve liked it or not) so that we have someone to journey with who understands us completely, to family and friends who have held us tightly and said, sincerely, ‘You are not doing this alone’ we are feeling it. We are really feeling it. If you have cried with us or for us, if you have prayed with us or for us, if you have genuinely meant it when you have offered us help then… thank you. 

As friends, you are not legally bound to support us but we know some of you are really, properly, doing it and you’re in it for the long run and we are so, so grateful. My heart is warmer, bigger and more elastic now because of you. It has taken Rufus and his diagnosis for some pretty hefty layers to break down and for me to get real with people. If you are reading this and you are someone with whom we are forming, building on or repairing friendships then we have him to thank.

From my understanding of the system, there will always be some key people in Rufus’s life, starting from now and going right up until the end. Most children fly the nest at some point, fend for themselves, create a new nest and start their own families.

Rufus will not be flying the nest.

Whether the nest is our home, partly our home and partly somewhere else and eventually, a long time in the future, somewhere where we won’t be around anymore, we know he will always need a lot of ‘looking after’ by some awesome, caring and loving people. Filling in that form to request funding for a carer to help us look after Rufus was not done lightly. I know it is the first of many forms where I will be signing over a little bit of my heart. Rufus is incredibly vulnerable, entirely dependent and completely innocent and trusting. To ‘hand him over’ into the care of someone else feels worlds away from handing my daughter over to the staff on her very first day at nursery. My hope is that only the very best, most loving, fun, silly, crazy and exceptional people are involved in caring for Rufus. 

I’ll leave you with this little video. 


I’m sorry if it’s difficult to watch. I’m sorry if it brings tears to your eyes. I’m sorry if it’s not pretty and it’s too real to see older children with Angelman Syndrome and the reality of what one, tiny, missing gene can do to a person’s ability to do the simplest things.

But I will not apologise for the beautiful things in this video that make me smile over and over again. The things that warm my heart. The hand holding, the hugs, the love, the support, the relationships, the smiles and the fact that this video says time and time again that we are not in this alone.

Rufus is not in this alone. 

For that I am eternally grateful. 

Peering Out From Beneath The Sand

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There is this age old myth that ostriches bury their heads in the sand at the first sign of danger so as to appear invisible, believing that if they can’t see a predator, they can’t be seen. I often feel like I am burying my head in the sand when it comes to Angelman Syndrome. See, we have this diagnosis that hovers above our little lad’s head that promises all these restrictions upon his life. It often feels like a predator, waiting to get started on him. Right now at 15 months old he appears ‘normal’ at first. Small for his age, yes. Quiet, yes. Super-smiley, yes. Not-yet-mobile, yes. But there is nothing really strikingly obvious that sets him apart from the rest of the baby crowd. He plays with baby toys, wears nappies, sits in a high chair, is pushed in a buggy, drinks from a bottle, sucks a dummy, sleeps in a cot, is carried around everywhere. In fact, if you didn’t know him and walked past him in the street, you would assume he is a perfectly normal…..let’s say, 8 month old. There are days when I look at him and imagine he doesn’t have Angelman Syndrome. 

*I have to interrupt the flow here and let you know that as I write this on my Mac in ’Notes’, it does not like the word Angelman and keeps changing it to Angolan Syndrome.*

This happens mostly when he is asleep, in his cot, and I peer over him and just let the peaceful, quiet, steady breathing be all that owns him. All I see is a baby. Right now, that’s what he is. 

And then there is the jolt back to reality. I peruse Angelman forums, Facebook groups and the tinterweb and am reminded of all that awaits us. I read of parents who have lost their angels to multiple illnesses related to the syndrome, to seizures and accidents. I see photos of cage-like beds that keep angels safe at night. I hear about bedroom doors locked to keep angels from harming themselves in the night when they wander around a sleeping house, unable to find sleep themselves. I see teenage angels wearing bibs and playing with baby toys. 

I do not want to see this. I do not want to think about this. I do not want this hovering above my baby’s head. Beneath the sand is where I need to be right now. It’s safe under the sand. I know what’s there, I can see just enough to know what’s right in front of me. Today. This minute, this hour, this morning. That, I can cope with.  

Ostriches do put their heads in the sand. In fact, they do this several times a day. However, they most certainly do not bury their heads in the sand to avoid being seen by a predator. In fact, ostriches, with their acute hearing and eyesight, can sense a predator a mile off and can outrun most of their predators at speeds of 43 mph. There’s no hiding from danger for ostriches but there is definite sand gazing. See, ostriches do something pretty beautiful as a species. They have these things called communal nests. Basically, all the girls get together and lay their eggs in one big pit in the sand and keep an eye on the eggs, taking it in turns to watch over them and turn them several times a day. 

When we see an ostrich with its head in the sand, it isn’t hiding from danger, it’s protecting its most loved and most prized possessions. And it’s doing it as a community. Taking care together to protect and nurture these tiny, vulnerable, precious things. 

Recently we have become friends with a beautiful family. We like to call them our Angel Family. The only thing we had in common initially was the fact that we both have children with Angelman Syndrome. Our angel is 15 months old, theirs is 5 years old. With exactly the same diagnosis, the same promises and the same restrictions hovering above his head, I can honestly say, he is an absolute joy and a pleasure to be around and just thinking about him makes me smile. He is a child who I need to see. They are a family who I need to be around. They are exactly the reality-jolt I need. 5 years on and they have a beautiful (and I mean b-e-a-utiful) boy who gives us so much hope and so much promise for the future. Yes he has had his fair share of hospital trips and seizures, he has a bed that keeps him safe (though most definitely not a cage) and a wheelchair for his tired legs but he is fully mobile, has some super-cool toys and a bedroom with an en-suite (darling). Now how many 5 year old boys get to have that? But as a family, they do not let Angelman Syndrome own them. It is a part of their lives, but their lives go on. With an Angelman Syndrome-free toddler and another baby on the way, they have looked at the predator and ran a mile, undefeated. 

Perhaps burying my head in the sand is okay for now. I am not hiding from the predator, instead I am keeping an eye on a beautiful, tiny, vulnerable, precious, prized possession. I am not doing it alone. And that feels good. We shall keep an eye on our eggs, communally. And we’ll look at the next thing when we need to. Until then, sand gazing is just fine.