Monday, 9 December 2013

Minutes or Hours

My Darling Mojo,
Today it is two years since you were born. Two years since the moment I held you in my arms for the first time. At that stage I was expecting it to be the last time and my heart simultaneously flooded with love and broke irrevocably. Oh how we had cried for you before you arrived; our girl who wasn't going to have a chance, and even for the time you might have, there was no chance of any quality of life. It must be true we thought, we had it in writing.

There was, however, always one feeling which I just couldn't shake. Hope. Even at the very darkest of times when the news seemed to go from bad to worse, it was there, always niggling in the background. Swelling every time you kicked, feeling proud every time a doctor looked surprised by how 'normal' the rest of your development seemed to be. Hope.

And so here we are two years to the day that your daddy stood for 7 minutes watching the doctors trying to help you breathe. "She's fighting Lizzie, She's fighting so hard" he told me over and over again. Little did we know that this would be our first encounter of the unflinching stubbornness and fight that we know so well today.

Then you were in my arms, and there you could stay.

So we took you home and tried to get our heads around what had happened. You didn't have a cot or nappies or clothes. John Lewis did very well out of Daddy, Gamma & Grandpops that afternoon. "We need everything you need for a baby".

So it began, the endless stream of medical professionals pouring through the door, all very well intentioned, all telling us what you would not be able to do, what 'rapid deterioration' we could expect. You smiled very early on, retrospectively it was a smile you had probably been suppressing since day one. The smile of someone with a secret. You knew something none of us did, not only were you going nowhere but you were planning on proving each and every single one of them wrong. And how you did...

You fixed and followed
You developed motor skills
Your progress was remarkable, we watched in awe as you picked up social skills with ease, smiling, laughing right on target. Even your motor skills, which we knew would be very difficult for you, came slowly and you always chose your moments to take our breath away by reaching out and picking something up on a day when I was feeling very sorry for myself, or rolling over just when I'd resigned myself that you would never be able to. I wasn't the only one who quickly learnt that you were not to be underestimated.

You laughed and laughed and laughed!

For the whole of your first year I was completely focussed on you reaching your 1st birthday. So much so that I found your first birthday a bit overwhelming. As you know mummy is a bit emotional on the best of days let alone on celebratory days. I struggled even then to get my head around how far we had come, how much you had achieved and I struggled to reconcile the child with no quality of life that I had prepared for with the vibrant, beautiful, sociable, happy girl I had. I struggled to contain the amount of love I have for you.

Your 1st Birthday!
After your birthday things changed everyone seemed to recognise the amazing progress you were making and life became pro-active. We began Portage, Physio & OT. You started to get the help you needed to use your fine motor skills and suddenly coco-pops were on the menu, individually eaten but eaten none-the-less. Life got fun, we found the Enhanced Children's Centre and our weekly routine was as much fun as it was dull medical appointments. Throughout all of it you were patient, hard working, resilient, fun-loving and so spectacularly stubborn.
I know, my baby, that it is hard some days. I know how much you hate the blood tests and I know that look on your face when someone takes hold too tightly of your hand to insert a cannula. You know what's coming and you're scared and you hate it and I hate it too. You are either ill or 'under the weather' most of the time and your room is full of vaporisers, saline, vapour rub and the Calpol and nurofen are never out of use long enough to be put back in the bathroom cabinet. Sleep is difficult, eating is frustrating and all the medications are a daily source of stress for you. All I can say my darling is that my whole life is dedicated to ensuring that you have to endure as little pain and unhappiness as possible. Whatever may come in the future I know, I will be in your corner, fighting as you have taught me to, pretending to be as brave as you are.  No matter how hard it will be, you, me & daddy can face it together.
No matter how old you are I don't think I will ever fail to be amazed by your being here. I love you so much that it regularly takes away my breath. Your bravery, strength, resilience, sense of humour and your capacity for love are all astonishing and I cannot begin to tell you how much you have changed us and how much we have learnt from you. We are more proud of you than you will ever comprehend and you are as loved as it is possible for anyone to be (and then some).
So Happy 2nd Birthday my girl, here's to many, many, many
All my love always

With my cousins at my 2nd Birthday Party!

Wednesday, 16 October 2013


"...and if you can just sign here to say that I have advised you that if anything goes wrong we will do everything we can to save her life"

The casual nonchalance with which you can accept a sentence of that magnitude is quite alarming and yet I did and duly signed my (or her) life away. I know that it's just procedure and that they have to say this stuff and that the anaesthetist has a very professional way of making you feel like it's a completely normal document to sign but during the time that your little girl is under the care of said anaesthetist and out of your sight you can't help but allow it to swim around behind your eyes. Are they doing it now? Are they trying, right now, to save her life while I drink tea?

Spaced out after my MRI anaesthetic
This latest round of hospital fun has all been planned and non-urgent which is of course easier than the emergency kind. Despite that there is a huge part of me that gets a teeny bit ostrich about the whole thing. In the last month Imogen has had both an EEG and an MRI. Both were performed to try and tell us more about her condition and potentially add information to her diagnosis/prognosis. It's only when facing that prospect that I realise that actually I have become quite comfortable with her existing diagnosis and prognosis. I feel like I understand it and her and our future. How would I feel if it changed? What do I expect them to say? What is the best (and worse) case scenario?

My EEG was hilarious!

What scares me the most is that I know the reality of the situation is that when we do get the results back the meeting we have is going to be bleak. When a medical professional looks at a brain with the kind of abnormalities that Mojo's has they can only offer their educated and honest views about what we are likely to face and that will be very difficult to hear after two years of nothing but her outperforming the first prognosis. Am I going to be able to re-deal with the same horrors of the initial diagnosis meeting.

My mum believes that I have blocked out a significant amount of my traumatic pregnancy memories and I'm inclined to agree with her especially when specific thing trigger memories I've not thought about at all since they happened. Going into the MRI suite today with Mojo was surreal. The last time I was there I was 6 months pregnant with her and today for the first time I vividly remembered talking to her while I laid in the scanner (a very long 40 minutes I'm sure anyone that's been through one will agree). I told her everything was going to be okay because we were going to be brave and begging her to fight and stay with me. Today I had to kiss her goodbye as she feel asleep and the nurses took her from us. She was going to be brave without me. Then as we waited for her to come out (a MUCH longer 40 minutes!) a song came on the radio (husband can vouch that this is true I don't just make up this sound tracking nonsense) it was the cover of The Calling's Wherever You Will Go and it was released about two years ago. It was on a tea advert! The first time I heard it I cried so much I was bent double with the agony of it. Anyway today it came on and served to remind me how far she'd come.

So now we wait. There is no best case scenario and in honesty no matter what the results are it won't change much as Mojo will continue to be treated symptomatically. The meeting will still suck.

In other more exciting news Mojo has been fitted for a chair to help us at home. It will mean we can play, eat and do therapy together without either my back breaking or her hips dislocating. It's
mind blowingly difficult to entertain a child with the cognition of a two year old and the body of a 5 month old without serious help and until now it's been a uphill battle but hopefully this chair will help. God bless the NHS.

Finally a lovely, lovely tale about a wedding. My beautiful cousin got married this weekend and as is the way during the early part of the evening the dancefloor was filled with the children dancing and jumping around and running off all their pent up excitement after a day of best behaviour. I always find it hard seeing children of Mojo's age in this kind of environment. My mum was holding her and she was watching the children dance and mum, keen to ensure Mojo is not deprived of any experience we can facilitate for her stood her on the dance floor to 'dance'. I watched and felt heartbroken that she was so limited until one of the bridesmaids saw her and before long there was a crowd of girls some much older than Mojo dancing holding her hands and in some cases on their knees to be the same height as her. It was quite something. Children are so amazing and accepting and give me genuine hope for her future.

Wednesday, 11 September 2013

August and Everything After

It’s that back to school time again when despite that fact that it’s been 15 years since I left school I am overwhelmed by the desire to buy stationery and new shoes. I love September it feels so full of promise, potential and fresh starts, exactly how we are supposed to feel about spring?! The one thing I have noticed this September however is that rather than feeling full of zeal and enthusiasm I am exhausted. This summer has left me absolutely drained.
Lake District Fun
Despite having been a mum of a child with complex needs for approaching 2 years now when someone says the word holiday I envisage relaxation, sitting by a pool or enjoying a nice glass of wine watching the sun go down. I really should have learnt that the reality of holidays with Imogen is somewhat different. We recently spent a week in The Lake District. The days were perfect, fun filled, relaxing and heavenly. The nights were very hard work, Imogen was very unsettled, sad and full of a very ordinary cold but knowing her as we do we knew that any kind of illness can get very scary very quickly and so we spent most of every night soothing her and rocking her and watching endless episodes of night garden while I dangled out of the window trying to get a signal on my phone in case we did need to get her to medical help quickly. It was almost surreal the contrast between the glorious days and the hideous nights needless to say we all slept very well on our first night home in our own beds, one road away from the hospital.
Pinch an inch (or a mm)
There's no excuse for my desire to be near medical help given that since our brief hospital stay in July Mojo has been doing brilliantly. Eating, sleeping, reaching and even pointing which is our latest new trick. We had a multi-agency meeting at the hospital this week which is an opportunity for all the people involved in her care to get together and look at her holistically and focus on what we can do to improve her development or help her maximise her potential. I know it is human nature to cherry pick the positives from these meetings however…. Mojo has made so much progress since our last meeting (six months ago) that I don’t even see it sometimes. Significantly she’s eating small amounts which six months ago she simply wasn’t doing. I include this next gem for any of you who spend your days angsting about how little your child eats. The consultant said she has worked with children with all kinds of neuro disorders and eating problems are a common theme. She told me that a study was done a few years ago looking at the effect a limited diet had on 400 children with neurological conditions. This included autism cases where children will only eat one food type (i.e only white food or only fish fingers) she said the results concluded that even those on a very restricted diet were getting ALL of the nutrition they needed from what they ate with the possible exception of Vitamin D (N.B I took that as medical advice to take more sunny holidays!). Anyway it made me feel much better about Mojo’s eating. The human body is a very clever thing.

In the meeting we watched a video of a physio session to examine closely her movements in order to decide the best muscle tone treatment to apply to help her. As is her way Mojo’s movements do not appear to fit into any of the camps 100% they are not wholly dystonic nor are they classic spasticity. In the end we have started her on a drug to limit her ‘additional’ unnecessary movements. Time will tell how effective it is. In theory it should help with her tone.

This week I have a carers assessment at our GPs. Bizarrely I am concerned about embarrassing myself because although I am incredibly well supported and completely happy don’t you find that there is always a risk that when someone sincerely asks ‘and how are you’ you might just burst into tears. No? Just me then?

In other more entertaining news today Mojo laughed for 20 minutes at the word pom-pom. It was awesome.

Friday, 2 August 2013

Diagnosis Day #2

So here we are again, 2nd August. Diagnosis Day. Today marks two years since I sat at the table in our old flat and wrote down semi lowbar hollow prosenkefaly. That's exactly how I wrote it, whilst in my best telephone voice agreeing to come and meet the doctor the following morning to discuss our options. I rang Bill who got off the train he was on, heading out to his best mates wedding, crossed the platform and came straight home. Then I hit search on Google and my life changed forever.

This time last year when I started my blogging I ran through the experience that had been the rest of the pregnancy If today.... My desire to reach out to other mums at that diagnosis point in their lives was sincere and compelling. I wanted to tell them that it was all going to be okay. Not of course that I could. How would I know?

I guess if you'd asked me this time last month how I expected this post to go I would have thought I'd be dwelling on the horror of the pregnancy and reflecting on the difficulties we have come through in the 20 months since Imogen's miraculous survival. Life had other plans. In this past month the HPE 'family' has lost a number of it's beautiful and beloved children and the outpouring of empathy and love I felt for the parents of these children was astounding. Their short lives had a lasting impact on everyone they met, on hundreds who they never met but had simply heard about them and even on the thousands who, like me, were sitting reading their stories from the other side of the world.

Then, much closer to home, some dear friends of ours experienced the devastating loss of a deeply loved daughter and we were beside ourselves with sorrow and confusion as to how to help or ease their suffering. Once again struck by how completely unjust the world can be. Another short life with the impact of hundreds of longer ones.

As a parent of a child with complex needs who faces an uncertain future, it is all too easy to get used to feeling a bit badly done to when you watch developmentally conventional children, jumping in and out of bouncy castles, paddling pools, chasing each other around the park, chatting away with their newly acquired language skills, learning and growing at a frankly astonishing rate. Sometimes, even on the best of days you can find yourself slipping into self-pity. I like to think that most of the time I avoid this, I don't feel sorry for us as I wouldn't swap Imogen (exactly as she is) for anything in the world but it is fair to say that it isn't often I feel like we have it far easier then most. Yet that is where I find myself today, feeling like the anniversary of our diagnosis is just another opportunity to celebrate how lucky we are and to delight and marvel in the miraculous wonder that is our beautiful girl.

If like us you are one of the lucky ones, if you can look at your life today and see love, joy, hope, happiness and optimism then drink it in, see the extraordinary in the mundane, take a breath and really feel the contentment, grab it with both hands and LIVE it.

...Right, now I will just dismount my high horse and leave it tied to this tree 'til next time.



Saturday, 6 July 2013

The Hospital: An Epic Journey

"Are you okay?"

"Yeah, I'm fine"

I was being asked by the A&E doctor who was treating Mojo early on Monday morning as she lay writhing in apparent pain, pouring with sweat and screaming.

I wasn't fine.

Mojo was very unwell indeed following a brief and violent tummy bug and we were here again, to do battle with her sodium level. Blood results brought the news that her sodium level was 180. Now a 'normal' blood sodium level is between 135 - 145. Mojo's sits around the 152 mark, we began medicating her when it reached the 'dangerous' height of 160 in March. So being told it was 180 was like receiving a body blow, the feeling of having a lead weight pressing on my chest began to kick in. The decision was taken to put her on a drip to deal with her extreme dehydration. My mouth was responding to all the questions but in my head I was just repeating over and over 180! One Hundred and Eighty....she should be in a coma. All the while Mojo is crying and writhing and flinching away from any attempt to soothe her. The adrenaline in my body (which was the only thing keeping me upright) was making my hands shake and I could barely hold the cup of water the nurse had given me. My hands were covered in blood from a nose bleed I'd had just as we were trying to mobilise to get her to hospital. Somewhere at the back of my mind I was aware that I was wearing a very brightly coloured bra and a white vest top and that covered in blood, sweat and sick I must look atrocious.

The hours pass surreally in the hospital, particularly in A&E where there are no windows and the high stress levels mean you lose track completely of the time. The cannula was put in (awful awful awful to watch someone do that to your baby, and usually repeatedly as she sweats so much it must be like trying to cannulise an eel). The drip was started and the waiting game began.

Eventually there was a little relief, we were to be moved up to the ward.

The nights in hospital are tough, sleep (on a tiny camp bed) is broken every couple of hours by the checks the nurses do on her stats, heartbeat, oxygenation of her blood, blood pressure and temperature. In our case this time the drip machine was an unwelcome source of random beeping. It's usually during the night that I find myself crying in frustration, it's always the small things that tip me over the edge like a beeping monitor or a squeaky door.  Mojo was really unsettled and I lay with my head on her pillow stroking her hair and telling her baby mojo stories, which are a concept borrowed from my niece who loves to hear stories about herself when she was a baby. I told her in detail about the day that she was born and about bringing her home and her first walk in the park and her first smile. As the talking soothed her she reached out and stroked my face and there was a moment that I was grateful for the opportunity to share such a magic few hours with my girl, a flash of respite after a nightmare few days.

Earlier that evening I'd been in the parents' kitchen on the ward and exchanged a smile with a man who was microwaving the same ready meal as I was. He had a glazed, frightened, nauseous look, this guy was a newbie, not expecting to be in the hospital that night, not quite understanding why he's there or how it happened. If I was to guess I would have said accident. As we made small talk (I showed him how the microwave worked and where to find a fork!) it turned out his 12 year old son had just been diagnosed with a tumor. I told him how amazing the treatments they have for these things are now and how tremendously resilient children are and how I was sure his son would amaze him with both his bravery and recovery. I left him staring out of the window, not eating his ready meal. My heart broke for him.

The following morning brought more relief, she was improving and we were to be moved to another lower maintenance ward. I went out to use the phone to keep all anxious family updated. I also went to the Chapel in the hospital where I sat for 40 minutes and cried. I cried because we were here again, and facing the reality of her condition again, I cried because I knew this would not be the last time I would sit and cry in this Chapel, I cried because one day will be the last day I cry in the hospital Chapel and none of us know how soon that day will come.

When I got back I was faced with a completely different scene, Imogen was suddenly really distressed again, having slept intermittently there was clearly something very wrong and she was going down hill. Quickly. As she turned over Bill noticed that the whole of one side of her body was swelling, her face was puffy and her legs looked huge. I felt indignant, this wasn't allowed to happen, I'd though she was better, I thought we'd survived this one. As the doctors arrived to check her over a few phrases were used which make my blood run cold, the worst of which is 'Rapid deterioration'. I hate it as it was the phrase used in the letter we had from palliative care when Imogen was born which told us that 'rapid deterioration' could be expected. As the doctors worked I found myself thinking that if this is IT, if this is THE rapid deterioration that leads to us losing her then her last night on earth would have been spent with me telling her stories and stroking each others faces. I was convincing myself that deep down I must have known that's why I'd let her sit up with me that night, It was too painful to bear. Blood tests were rushed off and we were told not to panic. Yeah right.

Two long hours passed, she calmed down and we calmed down. I had to call family to update them, I paced the corridor, trying to formulate an explanation which would be non-panic-inducing and yet detailed enough to warn them things might be seriously wrong. Mid phone call I was summoned back to the room for results. It was good, her sodium was right down and all her other blood work was normal. The swelling was apparently due to a lack of protein in her system making her body push the excess water into her muscles temporarily. Instantly calm once again descended.

Once we knew everything was okay I went home for my first shower in four days, as I got in the car I turned on the radio and having already covered my relationship with music in this blog it was obvious that anything with any significance could have set me off...

Bon Jovi, Living on a Prayer. I did that strange half laugh half cry thing all the way home.

The rest of the story is uneventful, the next 48 hours were calm, she came off her drip and we jumped through all the necessary hoops to get her discharged home where life continues as if nothing happened. It has to, life goes on (Thank God).

Wednesday, 22 May 2013

Swimming, Spaghetti & Sweating the Small Stuff

Painting with my Granny & my Cousin
I had a strange experience this week. I found myself sincerely worrying about something that had not yet happened and, were it to happen, would cause me, at worst, minor inconvenience and irritation. In short, I was worrying about something completely insignificant. It was only when the insignificance dawned on me, that the significance followed. When did my brain find space to allow insignificant worries to slip in and make their presence felt?

So I had a metaphorical dig around my head space. Then I found it, with a thin layer of dust on, tucked away in a corner, was the heavy grey box labelled 'impending doom'. It had slipped towards the back, a spot it occupied for years prior to our diagnosis whereupon it was propelled to front and centre and tended to daily. I just hadn't noticed it recessing, clearing the space for frivolous, recreational worrying.

It's no surprise that I have not had time to waste sweating the big stuff because Mojo's diary is jam-packed with fun stuff at the moment. Our month has been spent making ever more progress with the amazing team of people we have around us. Her sitting is improving daily and she can sit for slightly longer each time. She is propping herself up as a reflex which is another one of those things which sounds spectacularly simple but has taken a great deal of work. New skills include
 - Clapping: Single claps which don't always connect and must be prefixed by 'ready...steady...clap' but oh the joy on her face is something to behold
 - Waving: This is down to our lovely portage worker. Mojo can now lift her arm and open her hand to wave when people leave the house. Again she LOVES to do it not least because she gets the kind of reaction usually reserved for a balcony kiss at a royal wedding.

- Swimming: Okay so not lengths of front crawl but she has been attending water therapy classes which she has loved, primarily because it combines two of her favourite things, singing and her portage worker Martha (who I think she loves only slightly less than she loves hubs & I)
- Eating Spaghetti: In very small quantities and chopped up into teeny bits BUT it's being eaten!
- Differentiating and choosing between a plastic cup, a rubber dog, a teddy bear and a ball when revealed from inside a fabric bag. Yeah, you kind of have to be there but trust me it's ace.

All in all, life is very good with us at the moment and whilst we never lose sight of how quickly the dust can be blown off that 'impending doom' feeling we must also take the time to revel in it's subsiding and celebrate the wondrous achievements of our little girl who wasn't supposed to have any quality of life.

Thursday, 25 April 2013

Let's face the Music!

There is something fundamentally emotive about music. It's well known that babies respond to music in the womb. There is just something about a beat and a melody which captures us. The right song at the right time can evoke tremendously strong emotions.

I've always been a fan of sound tracking my life. Anyone who lived with me through my teenage years, my university life or even in my shared housing years in London will testify to the fact that every time I got dumped (and there were a few) I would choose a song and play it loudly to death while I wallowed. I am a BIG fan of the mix tape.

One of the first 'normal' (i.e. non-medical/therapy based) activities Imogen did was a music class. We joined a class called Monkey Music where a truly brilliant music teacher sings songs with actions and the help of a cuddly pink monkey. At the end of the session the babies sit or lie on a mat together while Nikki (aforementioned brilliant teacher) sings a lullaby and blows bubbles over them. The very first time I watched Imogen lying there with her contemporaries doing something just for her enjoyment, rather than for medical reasons was a very big, very emotional deal. She was four months old.

Since then we have been every week and this music class has been the location of so many milestone firsts. Including the occasion when Nikki offered her a tiny maraca and with characteristic patience waited for her to reach for it, I was about to take it for her when Imogen reached out and took it from her. At this stage Imogens hands were still almost always clenched. It was such an astonishing first that I cried and Nikki cried and I learnt later that pretty much every mum in the room cried. I think my exact words were 'she's not supposed to be able to do that'

Fast forward to a few weeks ago when during a song about the weather, Imogen, entirely mesmerised, sat independently for the very first time. Thankfully I have grown better at keeping a lid on my crying but I couldn't quite believe my eyes.

You would think, given all of the above, that I would be braced for a strong emotional response to seeing my favourite band live. I wasn't. I was invited at the last minute to see Counting Crows a band I love and associate with the very best times of my youth at University. A totally carefree time when getting dumped or missing a lecture was what constituted stress or sadness. I've not seen live music in years and the familiar, loud, pervasive music proved to be perfect erosion of the carefully constructed lid that I keep on my emotions. Thankfully my lovely friends (literally) held my hand and didn't judge me for my tears and despite the emotional interlude I had a really fantastic night.

I tried to think afterwards why I'd been so affected.  Was it because I'd not done anything so completely pre-motherhood for years? Was it the words of the song? Was it the contrast of the carefree days to the complex daily life we have now? Was it that I was struck by the fact that Mojo mightn't ever get to experience the teen angst and mix tapes that were such an important part of growing up for me? Maybe. Was it the three glasses of wine....probably.

Thursday, 21 March 2013

Swings, Roundabouts and other Cliches

I sometimes worry that my blog posts are a bit like those sympathy-vote back stories they do for X-Factor contestants. Not least because I find myself thinking of words like 'rollercoaster' and 'journey'. Inescapable really but do feel free to pick me up on any excessive superlatives as I continue to keep you all updated.

The last few weeks have brought both amazing development and further illness. Mojo picked up a very un-remarkable tummy bug which lead to very standard vomiting. The problem for us of course, is that when you spend your life obsessing about calories, weight gain and more importantly sodium levels even one day of sickness can cause serious problems. We did have to walk the tightrope of potential hospital admission for four days which was tough. Naturally as soon as she started to recover and we looked back, four days/nights really wasn't long at all. I mean it's nothing. Suddenly the twice daily calls to the (unendingly patient) complex care nurse are a bit embarrassing.

In her inimitable style Mojo has bounced back twice as strong, with a huge increase in her capacity for milk and while her appetite is still non-existant for food when she was weighed recently she has infact put on weight and now is almost on the centiles. It will be nice when her weight doesn't have a < sign before it.

My favourite new development comes to us thanks to the portage and physio team who have been working on Mojo's use of her hands. This has been really very effective and with plenty of practice her hands have found each other. That might sound strange if you don't know how difficult she has found it to start using her hands and it's a developmental step that I doubt parents of developmentally conventional children even notice but as with all milestones this is a big deal for us. Aside from the joy of the development it also has the added bonus of significant comedy value as I watch my very own teeny tiny Bond villain plotting her world domination from the high chair. The concentration on her face combined with the slow open and close of her hands around each other is amazingly funny. Ahh meester Bond I see you av brawt me my meelk.

Maybe you have to be there.

Finally three things have gone by recently which I drafted amazing blogs about and never finished (see aforementioned vomit week), International Women's Day, Mothers Day and Holoprosencephaly awareness week. To summarise three half blogs worth of deep and meaningful musings. Mothers are amazing, my mother is especially amazing, being a mother is amazing, even more amazing when you are a mother to a child with HPE. HPE has brought some amazing women & mothers into my life most of whom I have never and will never meet as they live on the other side of the world however their support and the sincerity of their concern for us is vital to my sanity and I value it immensely.

Friday, 1 February 2013

Failure to Thrive

FTT is an acronym which has appeared on many a note about our girl and it stands for Failure To Thrive. There are many many MANY things I hate about the term.

Dealing with the obvious one first, it can't be a good thing right? Everyone wants their children to thrive. The thing that gets me about it is the accusationary tone. Helping our children thrive is part of the whole parent job description. Parents whose children thrive are commended for their excellent parenting! By writing FTT on her notes I just read the 'FAILURE' bit. You, yes you Elizabeth, are failing to sustain your child, you are failing to meet her needs and you are failing her, now go and join that unfeasibly long queue for a blood test and think about what you've done.

The dictionary definition of thrive is - to grow, develop or be successful. To casually assert on her medical notes that Mojo is not achieving this magical 'thriving' status totally disregards the tremendous progress she is making. It makes me defensive of her. Were she able to understand the world around her and comprehend the meaning of FTT how unspeakably defeated would she feel. Having spent all week being bent and poked without complaint or tears, having drunk shed loads of that disgusting high calorie milk we insist she drink, she's even been trying to sit up all by herself and STILL you don't think she's succeeding.

The final thing I hate about FTT is the road it leads us down. The road we currently stand at the bottom of, the one with just enough turns in that you can never see what is around the corner. Today FTT lead us to blood tests and results which mean we have to start medicating our girl. We have thus far been very very lucky in avoiding medication for her. She has self managed all of her symptoms, it now appears that can no longer be the case. This makes me sad.

It is ungrateful, unrealistic even, to feel sad. Scroll back a mere two blog posts and tell that pregnant woman that she's going to feel sorry for herself because her baby needs some electrolytes replacing and she will cheerfully smack herself from the future in the face for being stupid. And yet sometimes the little girl within me wants to, despite everything, stamp her feet and shout that it is just not fair. Why can't she just be fine, why can't my baby be well, why do we have to go through all this. It only lasts for a minute or so and is always quickly replaced with the overwhelming realisation that without holoprosencephaly she wouldn't be our Mojo and maybe we would have an easier life, but a life without our girl would be infinitely poorer.

So hand in hand we go back to the hospital to discuss next steps and despite all the little FTT notes they may put in her book we will continue to grow, develop and be successful. Together.

Monday, 14 January 2013

Bring it on!

Back in the darkest days of our pregnancy I used to daydream about our baby, how she would be the exception to the rule and she would survive. If I allowed myself, I would imagine her coming home with us and being with us for Christmas. If I was getting really carried away I would dream about the doctors saying that they had made a horrible mistake and actually we didn't need them and we could take our baby girl home and live normally.

Never in all my most indulgent dreams could I have imagined these past two months.

On the eve of our girl's first birthday, I was kneeling on the kitchen floor attaching helium balloons to weights when the enormity of preparing for a 1st birthday hit me, so too did the tears. Tears which were never far from the surface for the rest of the weekend. The monumental first birthday came and went, surrounded by family and friends and love and cake and laughter. At precisely 2pm on her birthday the exact time when, on the day she was born, we were being told that there was no hope, we were together as a family, in our home, over-flowing with that same hope which we were assured didn't exist.

At Christmas we put out carrots for Rudolph and whiskey for Father Christmas. She danced to hymns in church and then we watched as she used her faltering grip to rip open presents and she sat at the table sucking on strips of turkey. It was a million miles from the stress of last Christmas which was spent in and out of hospital while doctors tried to work out why her sodium was so high.

So the New Year arrived and with it our home review by the Hospice whose excellent care we have officially been under since she was born. I'm not sure what I was expecting from our assessment but when the nurse concluded that Imogen was not in need of Hospice care and we would be discharged I was stunned. I closed the door as she left and cried and cried. The Hospice provides care to children who are not expected to reach their 19th Birthday and despite the fact the nothing at all medically has changed the fact that someone has said that we can be removed (even temporarily) from that category was akin to the high I felt when they said we could take her home after she was born.

So far 2013 has felt a little bit like an especially cheerful episode of Glee or a really feel-good musical film. The good things just keep coming, all of sudden we are meeting people who are talking about the future. Physio, early years centres and Portage have arrived into our lives. This week someone spoke to me about mainstream nursery and schools. Out of habit, I wanted to tell her that I don't like to talk about things like that because it breaks my heart that Mojo is unlikely to ever need them.

Last year was all watchful waiting and being prepared for 'rapid deterioration' and this year is all about progress and pro-activity and LIVING, enjoying our quality of life.

Don't get me wrong, there is no place for smug self-satisfaction when living with such an unpredictable condition and if you knew how many times I have started blog posts and then thought, God I can't publish that as it is tempting fate too much, you'd laugh.
I am however, starting to get the message that my girl has been giving me since she could first kick in the womb. I'm not going anywhere mummy, bring it on!