Dude, where's my Karma?

Mojo loves stickers, especially those given to her as a reward for working hard or being brave. She displays them proudly right up until the point when her compulsion to chew and bite things takes over and we have to retrieve them from her mouth. We came up with a few ways to save the stickers from a chewy fate, we put her stickers in our diary and then Daddy came up with the brilliant plan of sticking them to her car seat. The side of her car seat was covered in animal stickers, 'well done', 'good work', 'excellent' stickers. They made her (and I) smile every time we opened the car door.

So when I saw the state of Mojo's car seat which had been attacked with a crowbar by whoever it was who stole our car from outside the house last Sunday, I found myself wondering if while wielding the crowbar he even noticed the stickers let alone understood their importance or the amount of effort and achievement they represented.

What we got back of our car!

When the Police knocked on the door at 5am on Monday morning to ask us if we were the owners of our car it took a while to process what was happening. They told us that the car had been stolen, they suspected using an electronic device that can be bought online which overrides the key fob and enables cars to be stolen as easily as having the key!! Good to know, right? The Police had stopped and then chased the car which had run into a bollard and the thieves escaped.

Of course I was shocked and angry but in my head they wouldn't have been able to steal anything from the car, given that they escaped on foot, and the Police said the damage looked minimal so I was pragmatic. I was hugely relieved that we had removed the wheelchair which usually stays in the car overnight. I could imagine the headline in the Wandsworth Guardian 'Theives steal disabled child's wheelchair'.

As the week has gone on more information has emerged and when we saw the car the damage was significantly more extensive than we had been led to believe. Baby's car seat has been stolen completely and Mojo's was ripped, crowbarred and trashed. Gone completely were the coats, girls toys and most upsettingly of all Mojos favourite chewing toy. It's one we've cultivated for years adding all her favourite comforters to one specially imported chewable necklace, it was brilliant. I wonder what they did with it, where they dumped it? Oh and, aside from that, they have written off our car!

I veered from pragmatic to furious to pragmatic again.

The redeeming feature of our week has been Mojo's health which has been on a seasonally unusual high. She's super cheerful and doesn't appear to care that we are travelling in taxis and has instead just embraced the fact that Granny has moved in temporarily to help with logistics.

In honesty there have been an awful lot of feel good Mojo moments of late, which would normally warrant happy blog posts but life has got in the way and I've not been feeling the joy much. Her first school play at Christmas, her 4th Birthday, her first wee on a potty (oversharing much Mummy?).  We've had baby's first steps a weird collision of excitement and pride, immediately followed by the pang of sorrow for what Mojo has missed out on. Not that Mojo cared, she clapped and laughed along with the rest of us. Mojo is smart enough to recognise the advantages of a mobile play mate to fetch and carry things to her!!

Mojo's progress and happiness are keeping me from wallowing in too much anger about the car. I've told baby that her Twirlywoo has gone to live with a little girl who didn't have a Twirlywoo and she's cool with that.

So when eventually the car gets sorted out and we return to normal and all the 'stuff' is replaced we can start a new sticker collection.

There will always be more achievements and more brilliance to reward.

4th Birthday fun in December

Hope in the Darkness

Between Christmas and New Year this year we attended a Service of Thanksgiving for the life of a beautiful little girl called Ally Louise. Ally lived for eight days in December. Ally's impact on me and many others, is one that will live with me forever.

Ally's parents are good friends of ours.

Heidi and I were good friends but not especially close friends before this year. This year a degree of shared experiences have brought us together and have led me to the point where I find I cannot write about Mojo without first (with her mother's permission) writing about Ally.

When I first heard Heidi was pregnant I was driving to Battersea Zoo with the girls and my phone pinged with a group announcement that their 3rd baby was on the way. The response all round was amusement, with two children under three a third was what most of us would flippantly refer to as a 'nightmare'. You must be mad, we all laughed.

Not long afterwards the group received another message, apologising for the medium but telling us that Heidi had been diagnosed with a rare and aggressive form of breast cancer (Inflammatory Breast Cancer). Then there it was, a family's life imploded with one diagnosis meeting. Decisions to be made, hard, agonising, life altering decisions. Whilst in some ways it was a million miles from our experience with Mojo the themes, emotions and heartache all felt so similar. I described it to Keith, Heidi's partner and a very old friend as, 'Same shit theme park, different roller coaster'. I was desperate to talk to Heidi but given that I don't think we'd ever spoken on the phone before and everyone deals with things differently I was hesitant to offend her by equating our experiences. I spent every day remembering how I had felt while we agonised over the recommendations that had been made to us about 'discontinuing the pregnancy'.

Then one day I left my phone at Mojos school and by the time I picked it up and recharged it I saw that Heidi had called me. I immediately called her and we talked and I felt so much better for having spoken to her. Her strength, resolve, positivity and humour were an absolute tonic to all the worrying I had been doing about her. She had chosen to give her daughter the best possible chance, at a calculated risk to her own health, it was a brave, maternal, decision and indeed exactly what I had expected her to do. A while later she text me about this blog and I suggested to her that she blog about her experience as a way of processing and also as catharsis.

So Heidi started a blog. It is a beautifully, often comically written, account of her journey. Read it, I insist that you do. Storm in a tit cup by Heidi It tells her own story far better than any journalist (or friend) could.

Her campaigning for awareness of Inflammatory Breast Cancer has led to widespread media attention, news interviews and articles. I have watched in awe as she has shone heroically.

When in December she announced on her blog that her chemo wasn't working and the decision had been taken to bring forward Ally's arrival it was with her usual style and positive mind set. The news of Ally's safe arrival, kicking and screaming into the world was celebrated by many people who had been touched by their story. I remembered the feeling so well, the relief and then the unimaginable high of meeting a much longed for, much fought for baby amidst the uncertainty of the future. Ally's arrival felt like prayers had been answered.

Then.

Tragically and unexpectedly Ally's life on this earth was to be agonisingly brief. The call I received to tell me that Ally had become very unwell was on the last day of term as we were winding down to celebrate Christmas. There are only clichés to describe that feeling, 'there are no words' 'heartbreaking' 'devastated'. I knew that as much as I had been able to empathise to this point the journey she was beginning now was the one of my very darkest nightmares. The kind of thing I don't talk about to other mothers. The kind of thing mothers should never have to talk about.

The day after Ally died Heidi called me and we talked for over an hour trying to make sense of the injustice and the agony. It was one of the hardest and yet most significant conversations of my life. The conversation exposed to me what I really felt about many things that I've never ever had to say out loud. It exposed to me the strength of my faith in God, my coping strategies, my darkest fears and made me think hard about trying to articulate all of them into something that might provide comfort to a grieving mother. While doing so I inadvertently found that I had provided comfort to myself too, comfort from my own deepest fears.

The day of Ally's farewell service brought with it torrential rain and grey skies, we all remarked how appropriate it felt. There are some images of that day which will forever remain with me. At the end of the day, once the adrenaline and sore throat that comes from suppressing full on sobbing had subsided the feeling that I was left with surprised me. It was hope. It was hope that remained. After watching my friend do all the unimaginable things I have imagined myself doing, kissing her hand and placing it on the tiny basket which cradled her daughter, listening to her own words read, putting one foot in front of the other while tears poured but composure remained, leading people out to release balloons into the sky. It of course made me deeply sad, and yet hopeful.

Hopeful because the bond between mother and daughter was so tangible at that service, the connection between them, even in death, was so strong. The strength Heidi showed for her daughter, the words she found to convey her feelings so beautifully, the music they chose. The goodbye was one of tragic physical departure but Ally's presence in their family was, to me, absolute. Hope. Hope that when, one day we are in that position I will be able to find the grace and composure to say goodbye without losing Mojo from my core and demonstrate with as much certainty, that the bond between a mother and child is something which transcends everything we understand about this world. I don't in any way belittle the agony of the grieving process to come for them or the complexities of losing a child but instead to see through the pain to the love and hope at its heart.

So now when I look to the future or I find myself in the darkness of fear for my own daughter, I will find that hope and it will feel like a gift from Heidi and Ally and I will treasure it.

Heidi's journey continues on her blog.

Dear Whole Foods Salesman

Dear Whole Foods Salesman,

I'm sorry I cried....and swore at you.

It was just awful timing you see. I was only back from the hospital for a few minutes to have a shower. I'd not slept properly for about 48 hours, I'd had to feed my daughter through the tube that keeps her alive, every hour, on the hour since 6pm the previous day.

I think you might have been in training, there was a senior looking guy with you, he had a clipboard. You were so youthful, enthusiastic, cheerful and smiley. By crying (and swearing) I felt like I was kicking a puppy.

Believe me I was playing it down when I said I was 'having a bad day'

On top of the sleep depravation and stress, you knocked on my door to sell me vegetables (cue laughter from those who know me well) just as I happened to glance at the words to the hymns we will be singing at my granddad's funeral on Tuesday. It's difficult to explain the emotions associated with funerals. Ever since my 3 year old daughter was diagnosed prenatally, with a life-limiting condition, I regularly play out in my head what it will feel like the day I have to say goodbye to her. It's perverse I know but I feel like I can protect myself from the horror of it by running it over and over in my head. So naturally when faced with an actual funeral of someone I love it brings the feelings so close to the surface that they spill over with even the slightest provocation (like, for example, being sold vegetables!).

On top of that of course, when you knocked she was lying in hospital with an as yet undiagnosed infection (or infections). This meant that the fear of losing her was much closer to the surface than normal. She has this remarkable brain Whole Foods guy, and it's no exaggeration to say that a cold could kill her. The wrong cold, the wrong combination of germs. Don't even get me started on how many hours I've laid awake worrying about her developing resistance to antibiotics. She has them regularly you see, the strong ones. Sadly no amount of vegetables could help her immune system.

All these feelings are usually relatively easy to manage. I have well established coping mechanisms and a pull-yourself-together mode. The problem is the sleep. Once the sleep goes all the coping strategies are at risk. I can't remember my own name, let alone remember how to subconsciously self-protect.

You were very sweet, I don't expect there is a page in the training manual about cry-ers? You actually said exactly the right thing without any knowledge of the situation. You just said, that you were very sorry to hear that and that you hoped my day got better and you smiled. Thank you for that.

For the record, my day did get better, and my daughter is home from the hospital with her mega-strength antibiotics (shelve that worry for now, eh!) and life is creeping towards normal. Our normal of course.

So I wanted to say sorry and explain. I hope lots of other people on the street bought veggies from you that day, I'm sure they are lovely veggies.

Best wishes
Lizzie (the one who cried)

A Sweet Base Line

Sometimes it is so lonely. Really, really, lonely. We're not short of family and friends. Good ones. Ones that rarely say the wrong thing and regularly provide the conversation and respite that make life immeasurably easier. There are always however days (and nights, oh, the nights) when living the way we do is so isolating. When you are on your 12th sleepless night, and I mean sleepless rather than disturbed, it feels like you can't explain how you're feeling to anyone. Its suffocating. Whenever I say thing like this I am always inundated with truly uplifting offers of support, help, babysitting, even food. All of which are graciously received even if I know that I will not be able to take them up. The problem is that when she wakes in the night and she's screaming, its us she needs. Even on the nights when my husband is sitting up with her, when I hear that scream I am awake and with her. It's impossible to ignore. My husband is the same, we have bizarre passive aggressive arguments in the night. 'You go to bed' 'No no you go to bed, you need it more than I do' 'why did you get up, I'm fine' and so on and so forth. But we can't leave her, we just can't, the need to comfort her is too deeply rooted to be overridden even by total hallucination-inducing exhaustion. We are there, we are always there when she cries. The whispered conversations in the night about how helpless we feel and how scared we are, bring on that lonely feeling. Its quite an achievement to feel lonely when you are crammed two adults and a child into a toddler bed, clinging on to each other for want of anything more constructive to do.

Then the fog lifts albeit temporarily, and she sleeps a night. You will usually find a flurry of Instagram photos and Facebook updates on those days as I suddenly feel like I could take over the world. All of this emotion and introspection is completely self-indulgent because when Mojo wakes up on a good day you don't see her lamenting the pain and sadness of the weeks she was ill, you just see the smile. For me to use the word infectious in a positive context is a bit rich but there is no other word for it. Her, 'what a lovely day I'm having' smile could light up even my most self-pitying mood. What's more she is instantly ready to get back to work. None of the maybe I'll just take it easy for a bit mentality for this girl, nope, crack on, back to school please I've friends to see, people to smile with, things to learn.

The day after Mojo's return to school we had a meeting which was scheduled as a six week catch up. The school had been assessing, observing and monitoring Mojo for her first half-term to create a base line. A base line from which to create her targets and build on all her skills. A base line is where we start from. I don't know what I was expecting but it wasn't this. This blew my mind. I think it's because it is a written, formal document. It's a concrete assessment held in my hand that has been created entirely without my involvement, this is what the professionals see, feel and understand about Mojo. I know the root of my obsession with written proof, THE letter, the diagnosis pre-natal letter that I carried around with me like the flippin 'one ring' for months and months. I told myself so many times that it must be true because it's in writing on a formal letter, with a header and everything. Even now every time I get something in writing that contradicts 'no quality of life' I feel safer, I feel like Mojo is safer. Madness I know, and yet...

The assessment is broken down into four key areas. Personal, Social, Emotional Development, Cognition, Communication and Physical Development.  For each of those areas there are nine bullet points. Each bullet point list a different ability, a skill, an achievement. That is a list of 36 things that Mojo can do. Things she can do that are worthy of bullet point status.

Each page features pictures of her doing these things.

I am resisting the urge to list each and every one of the 36 things here.

But indulge me while I list my favourites...

- A delightful and sociable girl who likes to be busy.
- Shows concern when someone is unhappy
- Understands imaginative play and likes to feed dollies
- Uses a range of signs - some of these are her own
- Can hold a writing implement and scribble attentively
- Can sit cross legged for short periods when supervised
- Can shake, squeeze and push objects
- Can weight bear when standing with support
- Works very hard

In the big scale of things these achievements for most parents would go unnoticed. Sitting. Drawing. Standing. Holding a toy. For Mojo these are monumental achievements reached through sheer determination, bloody minded stubbornness and unrelenting hard work.

 P.S Anyone remember  

Hips don't lie (straight)

I have to confess I've had a dip recently, a period during which the positives have been that little bit harder to find. The unrelenting assault on Mojo's respiratory system has made me angry and it seems as if the smell of vanilla vomit is on everything I touch. Then there's our latest curve ball.

Our most recent hospital visit was routine. There is something comforting about the word routine that means that when you receive unexpected news it feels somehow worse. On this occasion it was a routine orthopaedic clinic. Mojo sees the orthopaedic surgery team because of her hip. Its one of those things that I've previously not given a lot of thought to because on the long list of things I should worry about its always been quite far down. Mojo's slightly misaligned right hip has never caused her any pain and the 'windswept' look it gives her body (which essentially means that she kinks left at the hips and her legs both appear to lean to the left) has never been anything other than a physio consideration that one of her legs is slightly longer than the other. Given that she was able to stand supported by a frame or gaiters and there is no reasonable expectation that she will ever walk I've dismissed this as the clinic least likely to present major problems. As it transpires, I was wrong.

To set the scene a little, because I thought this would be a quick nothing to report type clinic I had not worried too much about the fact that Mojo was not at her best. She was having a bad day for both congestion and vomiting and, whilst not unusal, meant that she was not in the mood for doctors.  Additionally, baby Ce who is dragged along to all these clinics was also tired and teething. As we went into the room there were far more people there than usual. Some of whom I had been expecting, some I had not. There were about eight of us in total (not including the children). After a brief intro to who was who in the room, which I did not hear in full as Mojo had started to scream, we began. The meeting started with a standard how are things, how have you been, what have you observed in her movements etc. All of this was conducted to a chorus of screaming and crying from both girls. Mojo, as she knew that an examination was coming, Ce, because she was, well, 13 months old and just having a scream.

An examination followed where the surgeon tried to feel how well the muscles and joints are working and stretching. Imagine if you will a child with already very high tone (very stiff muscles) in a savage rage, clenching every inch of her body and screaming as though she were being tortured and you have some indication of how accurate this assessment of her hip was. Meantime over the other side of the room Ce is throwing toys and screaming for Mama.

The last five minutes of the meeting are a bit of a blur as post examination the consultant says something along the lines of  'I have to tell you I am worried about her hip, I think it's shifting further out of the socket and I think surgery is likely at this stage' *Mojo is pulling my hair and screaming in my ear* 'We need another x-ray but I want you to know that I think it will show that it has worsened' There is a brief discussion above my head about whether an accurate x ray could be taken today. The lovely Physios argue that it couldn't be expected to be accurate given her level of distress and we are dismissed until such a time as an x-ray can be done.

I feel like this meeting has happened around me rather than with me. So many opinions and so much information, all the while all I wanted to do is get them all to shut up for just a minute so I can comfort my babies and actually engage with and contribute to the conversation around me. There is no time for that.

As we are about to leave I'm aware that within minutes of leaving the room and calming the girls I am going to re-focus and want to know significantly more information than I have been provided with. I go over to the computer where the consultant is now entering notes and over the volume of screaming and sub-conversations going on, ask her what exactly the surgery involves, what would it do. She briefly tells me that they will saw sections from both Mojo's thigh bones and reposition both her hips and she will be in a waist to ankle body cast for a few months but don't worry for now, we will see you again once we have the latest x-ray, bye. We are swept out of the room, I have Mojo and a pile of coats in one arm and the buggy on the other. The screaming continues only this time I want to join in.

As the fresh air hits me outside I feel confused and shocked and overwhelmingly sad. This was not in the plan, where did this come from? More surgery, a body cast!! How much pain will she be in? For how long? How will we operate? How will we get her in and out of the car? Will she be able to go to school? How will toileting work? Mostly I just feel angry at the way the whole clinic was managed! I shouldn't be leaving with so many unanswered questions.

So we are currently waiting for the next X-ray. In the meantime I've investigated alternatives (more Botox, different medicines, intensive Physio) and I once again feel in control of how this will pan out.

School Belle

'OH MY GOD, WHAT THE....'

Husband is doing bath/bed for baby and his distress is sincere and alarming. A familiar adrenaline rush drives me rapidly up the stairs to find him kneeling over baby running his finger over a huge purple and black bruise on her abdomen. It looked awful; internal bleeding? I looked at her incongruous smiling face and just as we started to make a plan to get her to A&E it occurred to me. Blueberries. She had eaten blueberries after her dinner. Sure enough the inside of her vest revealed a small supply of very squished blueberries. The internal bruising washed off. Order is restored. For the record blueberries make a very convincing bruise stain!

The thing that struck me was that I wasn't surprised, even though this was my medically conventional baby. Simply because it's autumn and autumn brings with it a really tangible sense of foreboding. The season change brings fresh waves of germs and autumn inevitably leads to winter. I know I say this a lot but we hate winter. The seasonal transition has already begun in our house. The vaporisers are out and the medicine cabinet (and medicine cupboard and medicine boxes scatted all over the house) is fully stocked. Secretions are our biggest nemesis. Imogen's upper respiratory system works against her all viciously, over-producing secretions and then not managing them which gives her a semi-permanent rattle on her chest, a constant runny nose and making sleep exceptionally difficult. Its amazing how over the summer you do forget how bad it is until it turns up again and you have spent three nights "sleeping" on the floor by her bed to turn her over when she screams and stop her from drowning in her own sick (caused by, guess what, secretions).

The other reason I'm so aware of the change this year is that things generally have been so completely wonderful for the past couple of months. We've had so much fun family time, so many developmental progressions and then of course there has been school.

School. For the past few weeks you have not been able to open social media without being met with a steady stream of tiny children in oversized school uniforms and exceptionally shiney shoes standing proudly in front of doors usually with the kind of smile that comes after twenty minutes of coaxing. Lets be honest we should all make the most of it because there is probably no other day of their entire school careers when there will be enough enthusiasm and preparedness to allow for a 20 minute pre-school photo shoot but I digress. I've always loved seeing these pictures I love the oversized school bags and the beaming faces.

In terms of milestones this is a big 'un and one which has been on my mind since the idea of Imogen being able to go to school was first mentioned to us. I can still remember what it felt like for the dream of school to fill me with sorrow because it wasn't Imogen's path (Bring it on!). So seeing her in a frankly enormous uniform with her very own school bag smiling proudly like the thousands of other children across the country was to put it mildly, a bit overwhelming. On her first day I dropped her off and in the car on the way home I felt lost. I spent the whole journey home thinking about all the things I hadn't mentioned to them. What if they can't understand her? Being non-verbal with a very individual often inconsistent interpretation of makaton signing means she is very easy to misunderstand and it is so very easy to underestimate her.

At the end of her first week she appeared from her classroom beaming and with some careful prompting from her teacher was able to tell me what she had done, she was even able to tell me the story in the book she had read at lunch time. She was so happy and proud and grown up and happy. So happy. So very happy. I waited until we got to the car to cry.

Respite is never a word I've been comfortable with, I wasn't sure it really existed, actual respite. There are very few people who we can leave Imogen with because of her needs and (without for a moment wishing to seem ungrateful) even those people generally require explicit instructions. Leaving her with someone for a few hours requires a significant amount of planning. I have always been responsible for what Imogen does with her day, I've supervised her diary, I've juggled her appointments, scheduled her feeds, managed her medication, I've translated her signing, I've managed her every need. Not single handedly of course, Daddy is amazing but ultimately, day to day, because I'm at home, I've been in charge. Now that we are in a school environment things have shifted. From 9am - 3.30pm I'm not in charge, in fact I don't even know what she's doing? At lunch time I have flashes of 'God I hope they don't forget to give her her medication' which is ridiculous but I'm just not used to relinquishing control. I get notes at the end of each day telling me which therapies she has had during the day. I no longer spend my week to-ing and fro-ing from St Georges. It's surreal. It turns out respite is quite different, respite is completely letting go just for a while. For a few hours, letting go and trusting that someone that I don't know IS able to care for Imogen and moreover is able help her to flourish.

For me underneath all the daily joys that school has brought with it, is the long standing relationship we have with the statistics, the initial expectations and prognosis. Here she is our school girl, looking up at her potential filled future. We are, as ever, in awe by her side.

Manual - Change - Reality

Handling.

Handling change, manual handling and handling reality all of which have been at the forefront of my mind for the past couple of weeks.

At a recent hospital appointment when Mojo's weight was taken we learnt that it had, at long last, reached the dizzy heights of the bottom of the spectrum. This means her little biro dot now sits proudly on the bottom of the range of 'normal' for her age. It feels weirdly secure, as though we have pulled ourselves up to the cliff edge after years of clinging on the edge by our fingernails. We're still on the edge of course and it's precarious and requires care and attention but we are, for now, facing the right direction.

Weight is good, weight means health, growth, development. Weight however, as it turns out, is quite heavy! Now I have a confession. I'm a wimp. I'm a tough nut emotionally these days but ask me to carry shopping or lift...well pretty much anything heavier than a cup of tea, and I complain. It's a long standing joke. When I was a Girl Guide my dad put my overnight camping backpack on me and I fell over backwards like a cartoon. A gym instructor once told me he'd never seen anyone as unbendy or as weak in the arms as me. I think he was genuinely impressed that I was surviving in the real world!!

I feel it when I go to move her from sofa to chair, when I carry her upstairs or lift her out of the bath. I feel her getting heavier. It is slow and gradual but transitional. We are moving from a time when I can carry her like a heavy baby to a time when we, and me probably sooner than most, are reliant on the wheelchair, hoists and winches. This will bring restrictions, restrictions on where we can go what we can do and where we can stay. It's a slow burning niggle at the back of my mind (and the bottom of my spine!).

With an eye to the future I have, over the years, signed up for various newsletters of companies which develop equipment and mobility aids etc. There is some amazing stuff out there to make life easier for our girl. Many of these companies offer great advice and community blogs as a resource for families.

One of these articles has sat unopened at the top of my inbox for the past few days. I read the subject line initially without thinking too much about it. But then, because it was there at the top of the pile every time I opened my computer, I kept thinking about it. It was an article aimed at helping people plan for the future and it was entitled 'What if we outlive our children?' and it sat there bold and unapologetic daring me to read it for days until I decided not to. I'm sure the article would have been uplifting in the end, exploring both options, who will take care of our children if we DON'T outlive them and how will we cope if and when we DO outlive them. I just wasn't in the right frame of mind for that rock and hard place dilemma this week.

Then, on the other side of the world a beautiful six year old girl died suddenly and our community of parents was rocked, once again, by the tragic loss of a child with HPE and the unavoidable reality check that follows. The little girl was a twin and her mother posted a picture a few days later of her equally beautiful twin sister dressed in a party frock on the way to her twin sister's 'going away' party. I wept for about 20 minutes for two children I do not know and their parents. I've not used their names intentionally as it's not my place to invade their privacy (and I sincerely hope my mentioning it doesn't), I don't know their mum, even online, but I've thought about her SO much and I've prayed so hard for her girls.

For us the 3rd August came and went this year. Four years since our baby's diagnosis landed in our lives. I found this year that it wasn't the initial meeting that I remembered, it was the follow up with an American locum doctor at Hammersmith which took place a few days later. This doctor had met other children with HPE before so we were sent to talk to her. After we looked at the MRI and talked about the likely outcomes she said 'do you have any questions' and I asked her if our baby would be able to smile. I don't know why that was what I wanted to know, but it was. Would I know if my baby was happy? As I scrolled through our recent holiday pictures that question came back to me. Would I know if she was happy....what do you think?

So as ever it is this girl and her smile that make handling possible. Handling emotionally, logistically and yes, even manually!!