A Crisis About Confidence

We have entered unknown territory. This week was the second time we found ourselves sitting outside a sonographer's room awaiting a 20 week scan. The first time it had been exciting, we were focussed entirely on the finding out whether our baby was a boy or a girl. That is what the 20 week scan is for, right? Talk about being unprepared. Instead that scan began the chain of life-changing events and diagnoses which brought us our miraculous Mojo. Needless to say the experience second time around was somewhat different. Braced is probably the best word. We sat, braced and quiet as the time ticked by until our appointment.

Fortunately our experience second time around was completely different. 'Normal' isn't a word I like to use in relation to people, primarily because there is such a negative connotation to being abnormal. I generally use conventional because being unconventional sounds much cooler, much more like a decision we've taken not to follow the crowd. Saying all of that there was, of course, something remarkably surreal about hearing the word 'normal' in relation to our new baby. Sitting squarely along the 50th centile for all her sizes and weight. Very, very, conventional.

The relief and happiness I initially felt was accompanied by a really complicated mix of emotions that I wasn't really expecting. I was reminded all over again of how random Mojo's condition is. Ultimately we now know that there is no specific genetic reason for her HPE, she could have had a very different life. By being relieved that our younger daughter isn't, as far as we know, going to have any of the fundamental and life limiting difficulties that our elder daughter has does that betray Mojo? Is it wrong to be happy about it?

It is very much unknown territory to feel able to prepare for a new baby. We never did during the first pregnancy. We couldn't. We prepared for a new kind of life but it was one without the baby I was carrying. This time we can prepare, decorate, have entire rooms built on our house! Last time we didn't do NCT or anti-natal classes, as one doctor said to us 'It may be very painful to hear other mums complaining about their healthy pregnancy experiences'. He was right of course.

How do we deal with a conventional baby. I understand that they move around of their own accord and don't stay where you left them, that they answer back and that they get really heavy!! Will we be unimpressed by their motor skill achievements. So you can walk...well you would be able to walk because all of your brain works!

Ultimately I know that none of this will be an issue because in the same way as I worried incessantly about how we would cope with a non-conventional baby, we will cope with a conventional one in the same way. One day at a time. I also know that the one person who will struggle the least with the new addition is Mojo who will love her little sister like no baby has ever been loved (in her distinctive, slightly bite-y style).

I suppose every mother expecting her second child has days when she cannot imagine loving another child as much as she loves the one she already has, while simultaneously knowing that she just will. My case just comes with added conflicted feelings.

As for Mojo the last couple of months have been really hard work, she has bounced from one viral infection to another, piling them on top of each other and dallying dangerously with dehydration every other day. Surgery is now on the cards to give her a g-tube which will allow us to keep her hydrated during the periods of illness and hopefully limit hospital admissions. I hate the idea of her having a permanent hole in her little tummy but know deep down that it's for the best. The combination of surgery and pregnancy hormones will be a fun one. We meet with the surgical team next month so time will tell.

In the mean time after all this drama, it's back to our unconventional normal for a while thankfully!


Easter Egg Hunting!

Sibling Revelry

The relationship we have with our siblings is the longest standing one of our lives. They share our childhood, they are our first teachers and peers, early experiences with them teach us some of the basics of human interaction, sharing, kindness, empathy, humour, LOVE. I hasten to add that single children without siblings are not by any means denied any of these things and indeed, even now, my only-child husband doesn't see a huge difference between siblings and long standing childhood friends. I suppose my enthusiasm for the relationship is thanks to the siblings I have and how very much I love them. As a middle child pop psychology teaches us that I should be very much damaged by this, attention starved, third best and filled with resentment. On the contrary I have always felt very spoilt by my middle child status. I get to be a little sister and a big sister. Best of both worlds.

1980s

 

 My early childhood (indeed most of my life!) was spent in awe of my big sister. I wanted to be her. She taught me all the dance moves for Bananarama songs, she corrected the fact that the words were not 'guilty as a coco bean'. She was in school plays that I longed to be in. She went to university and I cried. She invited me to house parties, taught me to drink cider and blackcurrant and had her friend throw out the student who didn't understand that the fact I was 16 mean that it was NOT acceptable to chat me up. She visited me at university and warned me off the unsuitable men, while still holding my hand and providing the sympathy when, having ignored her advice, it inevitably went wrong (without a single I told you so). I was bridesmaid at her wedding and she trusted me to calm her down when an allergic reaction to the Christmas Tree threatened to leave her with a puffy face for the wedding (which it didn't thankfully!) She turned up to my wedding looking fabulous and held my hand despite the fact her 4 week old daughter had been in hospital until the night before (a fact that nobody told me!!). When we were given the agonisingly bleak diagnosis for our unborn baby she was there, she was the one who threw me a baby shower despite the fact that we knew there was a chance baby wouldn't survive. She made me realise that other people had as much hope for my baby as I did. It was hugely significant.

1990s

2000's

When my little brother was born I remember being SO proud! I was very over protective of him as a child. If he cried, I cried. One Saturday when we must have been 6, 10 and 14 my Dad flipped his lid about a mess which had been left in the kitchen. We were all summoned and told that the culprit had to confess and Dad, as an afterthought, said that if it was Greg he wasn't allowed to go to his football game in the afternoon. Knowing full well it hadn't been me I instantly confessed, knowing how upset Greg would be to miss his game. I was duly punished and shouted at. When in due course the whole thing came out Dad didn't know whether to be angry or impressed! I was in my 20s before I recognised that the tables had completely turned and I was the one subject to my brother's protectiveness. It was a long story involving a bad boyfriend and my brother's (very uncharacteristic) willingness to flatten him. His adolescent quiet nature hid a razor sharp wit which now flourishes and which has, on more occasions than I can remember, during times of crisis brought me back from the edge of tears, into laughter. His very special relationship with Mojo touches my heart regularly and watching the two of them play together makes me so happy.

2010s

People often tell me that I'm so brave and so strong in relation to the challenges we face with Mojo. My siblings taught me to be resilient, to laugh at myself, to keep perspective on the world and they helped teach me about unconditional love.

I have watched my sister's young children learning with each other, growing together and loving each other. Knowing that Mojo requires so much of our time and resources the option of expanding our family has been one I've long lamented over. I've read all the leaflets from Sibs (the wonderful organisation which supports the siblings of children with additional needs) they talk about how difficult life can be for these siblings and how easy it is for them to feel under valued and under pressure. It talks about the huge responsibilities which present themselves far earlier in life than they do for those of us with conventional sibling relationships. Would we be selfish to have more children knowing how much care Mojo requires? How would I cope with pregnancy when our daily life is so physically demanding? All of this is before we even take into consideration the possibility of a repeat HPE diagnosis. Would we be able to cope with two children with complex needs? Alternatively could we cope with the emotional wringer of genetic testing and more meetings to dictate to us whether or not it would be sensible to expand our family? Probably not.

Then there's that thing again. That thing which refused to abandon me during my pregnancy with Mojo. Call it faith, instinct, call it gut feeling, call it lunacy but its the thing that allows us to believe in lost causes, to hope for the impossible and to disregard all sensible logic in favour of hope, optimism and (far more cheesily) true love conquering all.

So, with careless disregard to genetic testing, total brushing over of day to day logistics, casual discounting of pessimism but a wholehearted assuredness that there isn't a family in the world who could love a baby, a baby with any level of needs, as much as we could, we await the arrival of Mojo's baby sister. Our hearts are full to bursting with an enthusiasm to replicate the fun, laughter, love and adventures which prevailed in our own childhoods.

Practicing 'gentle'

Mojo is learning about sisters, gentleness, sharing and kissing tummies. I came upstairs recently to overhear my husband saying 'no, no sweetheart, there's no baby in there, you don't need to kiss Daddy's tummy' it took me a few minutes to stop laughing. Can't blame her for misunderstanding. She is going to be such a fabulous big sister.

So say hi to baby..... anyone got a couple of months free early September for a bit of childcare??

*waves at world*

If you're happy and you know it!

I have a mental image of the mysterious 'blood test lab' at St George's it's underground and looks a bit like something in an episode CSI. I imagine a team of beautiful, lab-coated, bespectacled scientists sitting around an enormous back-lit glass table, heads in hands saying 'For the love of God run it again, there is no way a child of two can have a sodium of 182!'. I suspect the reality is somewhat different.

So there we were, once again with a very poorly Mojo, on the 5th Floor staring out at the view and waiting, endlessly waiting, for the result of blood tests. It's the ultimate test of my personality. I'm sure I've said this before but I'm entirely non-confrontational to the point of cheerfully letting things go that have upset, angered or hurt me for the sake of avoiding a 'scene'. It's not a personality trait I'm especially proud of, I so wish I was stronger, more assertive, less inclined to cry when I'm angry and more able to stand up for myself. So the internal battle is pretty epic. The battle between the everyday me who smiles and empathises with the insanely busy hospital staff while they tell me test results are very slow at the weekend and the sleep-deprived, stress laden parent who wants to flip tables and punch walls until people understand the importance of rapid and appropriate care for the sick child lying in the cot. My sick child. My baby.

Exhausting is an understatement. It's funny really because I never do less than when we are at the hospital. I sit still almost all day. This stay was slightly different to others primarily because we 'caught it' earlier than we would have done were it not for a routine blood test on Friday morning. This meant that rather than arriving at A&E when the sodium reached it's height we were already in the hospital and it was still climbing which scares the daylights out of doctors who don't know us. When your base line levels are significantly higher than would be tolerated by any 'normal' person your dangerous levels would be considered fatal in most.

It took five days for her to recover her normal levels and despite the fact that the underlying problems which turned out to be TWO cold viruses were still present we were able to come home. A cold. It's not a fun place to be when you realise that it could be potentially life-threatening every time your daughter catches a cold! Anyway we have new plans of action in place for prevention in future, we learn something new about management each time we go through a hospital stay. Every cloud.

Not one to dwell on these adventures Mojo was ready to play out again by day two at home and has decided her new trick will be to make great strides in her use of Makaton. It's such a brilliant way of her communicating. It allows her expression which would otherwise be almost impossible. What I especially love is the spontaneity of this progress. She now does signing along to both 'happy and you know it' and 'Head, Shoulders' as well as a rapidly expanding repertoire of animals. It's so much fun to sing with her even when you are so tired that being happy and knowing it seems a long way off!!

Fresh Eyes

Can you remember the last time you saw something which blew your mind? The last time you saw something which stunned you into a captivated silence? A time when you found yourself awestruck, heart pounding, body rigid with excitement. Can you remember feeling like this at all...ever?

One of the purest pleasures in my life is watching Mojo experience the world. Experiencing it with a level of enthusiasm reserved exclusively for toddlers (is it weird that I resent that word 'toddler', mojo doesn't toddle but she's a toddler...I've said toddle too much now, I digress). I love to watch her exploring and processing things, laughing and watching.

Mojo spends so much time in therapies, Physio, OT, Portage, Speech and Language. Each of these

programmes leaves us with homework and targets and hours of things to do. Were we to do all of this homework mojo could easily spend all day, every day 'working'. Sometimes I think maybe if we did this her progress would suddenly be textbook. The approach we take is different. We take all of the elements and targets and weave them around our normal daily life. Last week when mojo did a spontaneous new Makaton sign, Pig, we 'positively reinforced' by heading to Bocketts Farm to meet some piggies and watch them racing (Our pig won! Go Bradley Piggins!). To my mind the excitement, joy and wonder she experienced that afternoon was worth a whole day of therapy.


With our new Firefly GoTo chair the supermarket has now become a wealth of learning opportunities. Sitting up at my eye level in the trolley allows her to practice language, choosing, grasping and releasing as well as maintaining her interest in food, which is an on-going battle. The first time we went to the supermarket with the new chair was so exciting for her that it made me see the experience completely differently, A chore becomes an adventure and the scream of excitement every time we went down a new aisle makes you see groceries in a whole new light. Mojos desire to reach out and touch the bright fresh fruit, the leafy herbs, the shiny tins and the fresh crunchy bread made me suddenly LOVE all the mundane groceries I usually don't give a second thought to.

Mojo, throughout her life, has taught me to truly value the big things, like the ability to breathe and the strength to stand and the full use of all my limbs. As she gets older it's the minutiae that she renews my appreciation for. The really specific things that are amazing and we just take for granted such as...

Penguins...Recently we met our first Penguin.
This was the reaction 

Then there's how we feel about flowers...   

                                ...and birds

Oh and brand new days are pretty flippin exciting too...

...and of course Supermarket shopping.

It's almost impossible to leave the house these days without finding something else which is the most exciting thing in the whole world. It is impossible not to join her in her enthusiasm because she's not wrong. The world IS amazing and exciting and full of fantastic, hilarious things it's just that you stop thinking about it after a while and it's so much easier to focus on the negatives.

By the way I completely acknowledge how eye-rollingly irritating I must be to encounter in daily life if you are just trying to get your weekly shop done or walk a dog or just keep yourself to yourself and there we are being awestruck by the world with all the bouncy energy of a Cbeebies presenter. I can only apologise and sadly know that it will only be a phase and soon Mojo (and therefore I) will start to view the world like normal people. But for now....

Festive fun... then back to the future!

January, Meh. Not a fan. It's cold and wet and everyone is full of germs and what's worse is that everyone is being good and dieting *shudder*.



Meeting the Bunny at my party

December, however, I LOVE. We had such an amazing one this year. Mojo's birthday was so much fun. A gang of 2 year olds at the farm meeting the animals, eating cake and singing songs. It was pretty much our idea of heaven and she had the most fantastic time. It warmed my heart to the point of bursting to see her playing with friends, squealing and laughing her spectacular laugh. I had so much fun I forgot to get overwhelmed or to wallow in the memories of the day she was born and it's rock bottom lows and unimaginable highs. We were too busy being happy, enjoying the now.

Singing with my friends!

Christmas swiftly followed bringing some well needed time with the whole extended family. Again laughter is generally the key feature of these get-togethers. Watching my husband, brother, brother in law trying to build a dolls house and a ride on car on Christmas Eve the wrong side of a few festive drinks was one to remember.

New Year was spent with friends on, a very windy, Isle of Wight. I can't remember the last time I felt so relaxed away from home. Quality time with old friends and their children, lots of food, drink, games and once again laughter. An awesome few days.

The most significant thing throughout the whole of December was the normality, the total absence of any worries about Mojo's health or happiness. She was as content as I've ever known her to be and completely well, eating, sleeping (after a fashion!) and we were just a normal family. No big deals needed to be made, she ate and played happily with her cousins and friends. She was just Mojo and we were just us. We were unrestricted, unstressed and unextraordinary.

Still in this frame of mind, feeling pretty invincibly normal, I found myself at the start of January in a seminar at the Enhanced Children's Centre. The seminar was an introduction to a course which is being offered to parents of children with multiple and complex needs. It is a tremendous resource and something which we are very lucky to be able to access. The course addresses many of the big issues we as parents face. It provides support and a safe environment to off load problems and feelings. The summary of objectives and topics covered felt, to me, like a smack in the face. It was a reminder that despite how normal we might feel, we are not. We are a family who face so many things which we have not even thought about yet. While we have found our stride now, this only served to bring into sharp focus the future and it wasn't something I was ready for. I have a very over-developed sense of empathy and I find it agonising to see the pain in other mothers as they talk about diagnosis and prognosis and daily life sadness they live with. I find myself thinking, God that must be awful, how do you cope. Then I realise that we are in the same boat. For a very innocuous meeting it turned into a fairly significant challenge on my sense of identity. Am I in denial? Does anyone view themselves in the way the world views them ('poor them')? I don't think I'm ready to take on the emotional impact of this course just yet, despite the rational side of me being able to see the obvious benefits of it.

One very positive thing that did emerge from the meeting was one way that I could categorically differentiate my experiences with those being discussed by others. I, of course, will not go into the details of other people's stories, absolutely inappropriate. What I can say is that not once have I felt that any of my friends or family have been embarrassed, ashamed or even socially awkward with us since Mojo was diagnosed during my pregnancy. Nothing has changed, we don't get tilty-headed sympathy, we are not secretly* or otherwise excluded from playdates, we are just us. I think that makes us very lucky to have such brilliant friends and family. So because I don't say it enough, you guys rock, thank you.

To end on another completely exciting note Mojo's language is suddenly developing at an astonishing rate with all kinds of new noises emerging, the most beautiful of which is ma-ma. I could listen to her say that all day. Troublingly the other word she has developed a love for is Elephant. My own mum pointed out that we must hope she does not come to associate the two new words as she's leant them at the same time. Thanks mum!


*Am presuming, dear friends, that you not having loads of secret parties without us :-)

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

more.

 

All my love always

 

Mummy



With my cousins at my 2nd Birthday Party!

MRI, EEG, OT, OMG

"...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.