Mother's Daze

Even the most cynical of people, the 'I don't do Hallmark Holidays' types, have to concede that Mother's Day is worth celebrating. Mother and child; the most fundamental of relationships. I say this as someone who recently gave birth and one who has been lucky enough to be the recipient of the most amazing mothering for all my life.

Most of us learn how to be a mother from our mother. In practical day to day terms 'Mum how do I get poo out of white cotton babygros' 'Mum she hasn't stopped screaming for 5 hours what do I do' and so on and so forth. Also in experiential terms, we remember things from our own childhood that taught us lessons. It's not just the practical stuff either it's the love. That unconditional, all encompassing, relentless love. As a child you don't 'get' it. You know that you are loved but it's only as an adult that you understand the love.

For me there is a moment from my childhood in which I remember being struck by how loved I was by my mum. When I was probably 9 or 10 I had just started doing my own shopping for gifts rather than just putting my name to whatever my sister had chosen. I had gone into forget-me-not (a card and tat shop in the village) and chosen a tiny little teddy bear pin for Mum's Birthday, it can only have cost a couple of pounds. Mum had made all the right noises when she's opened it and off I went to school. When I got home that night she was on the sofa and she had been crying. I remember it so clearly because my first thought was that her dad must have died (he's 91 and going strong!) Mum told me through the tears that she had worn the pin and it must have fallen off and she had lost it. She was devastated. Even at that young age I knew that it couldn't possibly be the loss of a cheap "gold" pin that had upset her so much. It must have been because it was from me, because I had chosen it. The loss of that pin made me feel so immensely loved that I can remember the feeling of it even today.

It's clichéd to say that you don't appreciate what being a mother involves until you are one. It is also foolish to make sweeping generalisations about mothers given that we are all humans and therefore fallible. Every mother/child relationship is as individual as each romantic relationship is. As my mum has always told me the only two people who ever truly know a relationship are the two people in it. Therefore you must forgive the clichés and generalisations I make and know that I have in mind today those people whose relationship with their mother or their children does not fall into the flowers and cards category.

Saying all that, fundamentally as mothers we all go through the same things. It's the reason NCT is so popular and Mumsnet thrives with people sharing advice, asking questions in the middle of the night. You know you've been there, that feeling of relief when the internet automatically fills in the end of the question you are typing into the search bar and immediately you know that you're not alone!

Being a mother to child with complex needs changes the mothering experience, it complicates everything from the everyday practicalities to the dreams you have for their future. Around this time of year there are always lots of inspirational quotes, poems and 'wisdom' floating around social media about Mums and mothering. Often the theme is one of cherishing the moments while your children are little and making the most of them because one day they will grow up. One that I always notice is the one that talks 'the last time' that one day it will be the last time they want to sit on your knee for a cuddle or the last time they will be tucked up in bed or the last time they will hold your hand just because. It runs through me like cheese grater because for those of us with children with 'life limiting conditions' that checklist could be every day of our life. We live in dread of the last times, it's not just a whimsical poignant reflection on the passing of time it's the daily nightmare we try and push to the back of our minds. It's things like that which shine a very bright light on how different mothering is for us. Cherishing every moment is part of the territory and it is one of the positive side effects of living in the moment. I know I will never take being a mother for granted.

I'm not sure what conclusions to draw, this post is disjointed and all over the place and not what I had planned. Like motherhood.

P.s Love you Mum.

World Book Day - A love letter

Mojo will never run around a playground. She approaches toys very differently to most three year olds negotiating carefully with her right hand and almost always giving in to the compulsion to put it straight into her mouth. Watch her with a toy or in a playground or painting and drawing and her complex needs are evident, her disabilities are obvious.

But watch her at the library and there you have a very different proposition. Watch her turning the pages of her favourite book, signing away, knowing what is coming on the next page. Watch her choosing carefully from the shelves examining each picture and absorbing the variety of book sizes and shapes and colours. Here there are no boundries, no disability. Don't get me wrong the effort it takes her to turn each page is enormous the reaching out to make choices takes time but every step is worth the reward of a new book adventure each time. Mojo's library card is dog eared and I love that. It's well used. She loves the library.

Books in the waiting room

Books were one of the first things she ever engaged with. At first with the textures, colours and shapes and then the pictures and now, the stories. Books can provide comfort when almost nothing else will. In hospital treatment rooms often nurses or play specialists try and distract Mojo with flashy toys or teddies in general this is greeted with a disdainful
look (I'm not stupid and I know what you're about to do)  A book however is greeted warmly (well I suppose if you're going to do it this will stop me thinking about it while you do). A book keeps her company in a hospital bed when everything hurts and she feels horrible. In fact when I walk into any medical appointment with her and I see books in the room I know we will be okay.

Books help to explain the world in way that we never could without them. Books about getting a
baby sister, books about going to hospital, books about starting nursery. Barriers are broken down and life is made easier for someone whose understanding of the world is hard to quantify.

Experiential...

It's not just for the bad times that books come into their own. Books in our house dominate the good times. When we decorated the room for our new baby a story corner was created and filled with books and interactive stories (Stories told with props to bring it alive, amazing idea and really easy to do with some sensory bits and bobs)

EVERY night without fail

At bed time when Mojo is often as her most uncomfortable and distressed a book provides the bridge from screaming and writhing to settling and breathing easy. Next to her bed is a pile of well thumbed (and occasionally bitten) books along with the complete Beatrix Potter collection which work, on occasions, like spoken melatonin, half way through Squirrel Nutkin and the eyes get heavy and often I find I'm reading the end of the story to myself!

I love the idea of Mojo learning to read. It excites me, the doors it will open and the freedom it will give her to explore worlds and perspectives that might otherwise be impossible for her to experience.

So here's to World Book Day and all the costumes and the reading and the stories brought to life. Here's to all the writers of all the books that are motivating enough to make Mojo reach out to turn the pages. Here's to all the doors books will open for Mojo and all the joy they bring her each time she sits down to read. Here's to people like the tremendous author and illustrator Quentin Blake campaigning for better representation of children with disabilities in mainstream literature for children and young adults. It would be nice to know that rather than having to seek out specialist books we could find characters Mojo can identify with in her favourite books.

So here it is my love letter to books and all the amazingness they hold in their enticing pages.

Story corner!

A change is as good as a rest....but can I just have the rest next time please!

I don't like the post below, it's not reflective of how I am feeling today but when I sat down to write, this is what came out. Self-pity is something I try to avoid especially in this blog which was supposed to be focussed on the HoPE in HPE but also it seemed wrong not to post this because it's all true and even though it might not be how I want people to see us, it's us.

I hate Winter.

Viral infections abound in Winter, everyone has them. In fact mention to anyone with young children that your daughter has a viral infection and you will be undoubtedly be met with 'oh gosh ours too, isn't it horrid'.

The pre-op 'smile'

Naturally in our infinite wisdom we chose deepest winter to affect the biggest change to Mojo's daily life so far by having her feeding tube (gtube) fitted. Actually as previous posts have mentioned this was in fact attempt three with previous tries being thwarted by illness. As it transpired attempt three should also have been halted by illness but it was a teeny fledgling illness which was yet to make its presence felt. So instead we learnt what happens when you take a teeny fledgling viral infection, pass an intubation tube past it during an operation, transporting it straight into the lungs. You are left with a horrible, raging, dangerous chest infection. In Mojo's early days someone told me that it is usually complications from things like chest infections which kill children with HPE, it's something which unsurprisingly has stayed with me and every time I hear 'chest infection' my blood runs cold.

Like father, like daughter!

To cut a very long, complex, story short our short hospital stay became our longest stay to date and the six weeks which have followed have been incredibly hard work. Probably the hardest yet. Mojo has been sick at least twice a day for 6 weeks. Twice a day. SIX WEEKS. She still cannot breathe through her nose and therefore cannot sleep for any period of time without waking making a heart-breaking frustrated screaming noise. The only way to ease this is to intercept it as soon as she starts to become unsettled, which has meant that one of us (and usually my husband as I'm still breastfeeding baby Ce) has slept on a very small camp bed next to Mojo's bed every night. Six weeks.

Since the operation Mojo's illness combined with her inability to breathe through her nose has meant that the feeding tube which was meant to be an emergency-only fluid top up tool has become her primary and indeed, most days, only source of nutrition. She no longer chooses to drink anything by mouth. I am still praying that this is a short term thing that will improve once the breathing problems ease. As for the vomiting, I'm still trying to find some answers.

Needless to say the start of this year has been exceptionally hard work. Yet when people ask I still find myself saying the same thing.
'How are you all'
'Oh we're fine, Mojos not been so good but we're okay'
It's because it's impossible to explain what it's like living this life. This knife-edged, sleep deprived, relationship testing, sanity pushing daily wade through treacle. So you put on your game face and you go to work.

Then you have a good day. Mojo wakes up and she's slept for more than two hours in a row, she's in a good mood, smiling, laughing. She doesn't throw up her breakfast, or her lunch. She chats away in Makaton to you. She's well enough to do a normal activity like go to the swings or even the cinema. She comes home and wants to play games and read books. Then you feel like everything might just be okay. Even if by bed time she's been very sick and is struggling again to breathe as she tries to fall asleep, you feel just that bit better about the world.

If things continue to improve the way they have been in the past few days it may well be that Mojo will be able to take up the nursery place she was due to have at the start of January and some semblance of normality will once again reign in our house. Even if it is a house with sick bowls in every room (including measuring jugs to measure the sick so we know how much fluid to replace!) and we're up to our elbows in disposable (pah!) syringes.

I know that things are finally getting better and I know that because I'm here and I'm writing this.

I know things are better because for the first time since she was born Mojo has a sodium level is the same as you or I, which is completely down to the extra fluid intake the gtube facilitates. I know things are better because she has put on weight despite all the illness and the vomiting. Primarily I know things are better because I can see it in her face and in her smile.

I also feel, all too keenly, that things could be much, much worse. This winter has been savage for many of our HPE friends with long hospital admissions, terrifying life threatening illnesses and in a few cases life taking illnesses. When I think of those people I feel ashamed that I have effectively whinged for an hour about a chest infection.

Next year we're off to the Caribbean for the winter and I will post pictures of Mojo sipping mojitos rather then banging on about woe-is-me!

Right...I have a nursery lunch box to buy.

Happy Old Year!

About this time of year each year I put together a photo album. An old school one with proper printed out pictures and sticky film pages. I love photo albums. Since Mojo arrived I have been very diligent in documenting her life for obvious reasons. Most years it seems as though time has flown and little has changed. Creating the album for 2014 however has been quite a different experience. I am always telling people (anyone who will listen) how amazing Mojo is and how well she is developing and how much she is achieving but the enormity of what she has achieved in just one year has really astonished me this year.

We as a family have been quite busy achieving our own communal goals. Growing a human - from scratch! Building an extra room in our home and all the various moving out and packing up that involved. Working. Planning. Sweating the small stuff. All the while quietly in the background Mojo has been growing, learning, achieving, developing in her casual, extraordinary way. How is it only a year ago that she couldn't use Makaton other than hand-over-hand when now she is teaching most of her therapists (and us) new words everyday. The fact that she can now communicate so effectively with us and with others is such a HUGE deal and it has crept up on me. Because Mojo's development is so gradual and in small, determined, steps the magnitude of it is sometimes lost among the chaos of daily life. Until you sit down and absorb a years worth of photographic evidence.

POINTY FINGER!!!!

This month Mojo is going to be starting Nursery.

NURSERY, on her own, three days a week. Every professional we meet describes her as bright. Clever. Sociable. My personal favourite came for our very beloved Portage worker who's amazing tutorage Mojo graduated from in December. She said in her handover document to the nursery that it is very easy to underestimate Mojo but don't be fooled as she is MUCH more capable than people expect. I can even include myself in that statement.

Look mum two hands

We had just two hospital admissions last year (and both back in March). Don't get me wrong we had our fair share of close calls and periods of observation in A&E. All told however it demonstrates that we are getting better at managing the medical side of our journey. We spend so much timing beating ourselves up about how we cope with Mojo's medical needs that it would never occur to me to pat ourselves on the back for just how amazing it is that despite the fact that she was ill from February to July almost consistently we only spent 10 days in hospital.

Mojos latest report from Small Steps (an amazing charitable organisation which runs conductive education sessions for Children with physical needs) told us in no uncertain terms how proud we should be of how much she had achieved in the space of a term. Weight bearing through both her arms and legs. Tolerating rolling, standing, kneeling with less resistance every week. I'm painfully aware, particularly given the experience of watching a conventional child develop with graceful ease that we currently have the pleasure of with baby Ce, that it's hard to imagine quite how much effort goes into achieving such apparently straightforward things but trust me it's monumental. The tenacity, patience and bloody hard graft that Mojo displays in the course of one year is more than I will need in a lifetime.



At a tea party just like the other kids!

Right now I could explode with pride and happiness. I won't though, I'll just get back to my photo album construction and praying quietly for 2015 to live up to the joys, laughs and awesome achievements of 2014.





Multi purpose wash baskets!

An Afterthought on Portage Graduation:

Just before Christmas I saw a look on a strangers face that was so familiar it gave me goosebumps. We were at one of the three thousand Christmas parties Mojo was invited to. The look I saw at the party was on the face of a new parent. His son was at a Portage social for, what I presume was, the first time as he looked to be only a few months old. The look was one of awe. I could see so clearly on his face that he was getting that wave of  *oh my God we're not alone! There is a community here and it is amazing and loving and fun and safe* The father had such a huge dewey eyed smile. I remember the first time I felt it. It's always the group singing that does it and add Christmas songs into the mix and you're looking a very potent emotive experience. I wanted to give him a hug and say 'I know isn't it AMAZING, You're going to be looked after' (I didn't). It seemed such an appropriate end to our Portage experience, especially given that we have come so vary far from those early experiences ourselves. As with so many of the people who have worked closely with Mojo it is impossible to find the right words to thank them enough for what they have done and continue to do. So you just say thank you give them a hug and know very well that you will always be grateful for the things they have done for your family.

OH MY GOD!!!! Holding herself up on a MOVING ride. I'm holding my heart to stop it exploding!

It's beginning to look a lot like chaos!

For the past few nights just as I'm falling to sleep I've had that horrible stomach churning, unsettled feeling. The one that is a mixture of nausea, fear, anxiety and even excitement. I was trying to identify why it's happening, looking for a specific thing to blame it on. I started running through the list of things I was worrying about. It was when I'd managed to mentally list about a dozen things including, impending Botox (Mojo not me!!), impending Gastro Surgery, baby's first immunisations and development checks, 3rd birthday plans, nursery induction and even Christmas shopping that I realised that perhaps, just perhaps it was a culmination of all of the above!

So first things first, I've discovered a silver lining that I never knew existed which is always nice. When one is dealing with a conventional baby there is a genuinely mind blowing amount of advice, methods, routines, plans and books to follow. I remember being so envious of my friend who had a book called 'what to expect in the first year'. I felt hard done by that with Mojo nobody could tell me what to expect in the coming days, let alone the coming year. Imagine having a book which will tell you what to expect and what to do and how to get it right I thought. Lucky bloody 'normal' mums. Well, not so much it turns out. In fact it turns out that being able to disregard all baby advice and competitive parenting because your baby is not expected to behave conventionally is very liberating and in fact not having a book to beat myself up with first time around was a huge blessing in disguise. Admittedly it was a very convincing disguise but now with hindsight and a conventional baby on my knee I can see it clearly. So it is with huge self discipline that I am attempting to shelve the books and do exactly what we did the first time around and baby number two like a tiny unpredictable human without worrying too much about 'what to expect'. (I reserve the right to ignore this high horse approach when I'm googling 'baby cross eyed normal?' at 3am)

Adjusting to life with newborn aside we've had a month of anti-climactic stress and diary juggling caused primarily by Mojo not being well enough to have her scheduled surgery this month. We spent three hours waiting to 'check in' to hospital only to be told by the anaesthetist that Mojo's cold would mean that if he had to put her under he would 'almost certainly put her in intensive care'. Urmmm yeah, okay, lets not then!!! So after lots of preparing both her and I for it we now have to wait until days before her 3rd birthday for the rescheduled operation. In the meantime tomorrow brings her first Botox injection to try and help her hip movement. The side effects list includes a 'flu like' illness. Excuse me while I bang my head repeatedly against this wall. Can one buy shares in Calpol??

It was Children in Need last week and once again I found it very surreal to find myself associating so closely with the appeal films, you know the ones that make you cry because of how hard life must be for these children and their parents. Despite directly benefitting from fabulous projects which are funded by the charity I find it very difficult to reconcile her as a 'disadvantaged child'. Not least because we have done so much fun stuff amidst all the medical chaos. Seaside mini breaks, parties, Halloween fun, swimming and cycling with Wheels for Wellbeing. As ever no amount of illness or procedures can dampen her mood or compromise her beaming smile.

Wheels for Wellbeing!

There's a lot going on. my memory is shot and despite baby being an amazing sleeper the sleep deprivation of night feeding does take it's toll. As always at this time of year the weeks seem to be flying by and the to-do list of jobs that I usually enjoy such as Christmas shopping or birthday cake baking feel a bit heavy. That's the best word for it, heavy. Hopefully once the operations and procedures are completed and we can focus on the nice elements of December things will seem easier.

Have you ever read a more melodramatic excuse for not bothering with Christmas cards this year! Honestly, I don't know what I do with my time.







 

Strawberry fun!

Two's Company

I thought it would be more confusing. I thought I'd feel divided, halved, conflicted. I couldn't imagine how it would feel loving anyone in the same way I love Mojo.

I thought Mojo would be confused, jealous, even cross. How could a child with a reasonably unquantifiable understanding of what was happening learn to share the limelight she has been bathed in for almost three years. How would she cope with sharing me, sharing her daddy, sharing her home.

When will I learn that Mojo simply hasn't read the manual about how she is 'supposed' to behave or react.

Baby sister's arrival was lengthy, exhausting and culminated in a short stay for her in special care. The irony of this was not lost on me even in my drug addled exhausted state. They must be mistaken as this was my 'healthy' baby, this baby wasn't destined for special care. It was hours before I got to meet her, to hold her and to feed her. The flood of maternal love, as warming as stepping into a hot bath and as exhilarating as any other human experience, overwhelmed me with its force.

The feeling of meeting my second daughter was to be one of two overwhelming meetings that day. Introducing my daughters to each other was indescribably beautiful.

My girls. Together.

When Mojo was born and throughout her first year every 'first' that she achieved was a moment that I captured in my heart, banked and treasured. I knew that no matter what happened nobody could take any of these memories from me. We accepted each first as a potential last and only.

Never did I ever dream that one day we would be able to experience her first meeting her baby sister. Nor could I have imagined the instant love and adoration that I would see between them. And yet. Peering into the cot with an equal measure of excitement and amusement (Mojo found baby's wriggling hilarious, like she was a moving dolly!) there she was. No longer my baby, my grown up girl. Memory banked firmly in my heart.

Naturally now, I battle my internal pessimist thinking it must all be too good to be true, there must be disaster looming around the corner. So when one week into life with two Imogen became ill, stopped sleeping and drinking and took to heartbreaking whimpering in pain and discomfort, it was almost like I'd willed my fears into reality. As it transpired however we coped. We had to call in the reinforcements (eternal thanks to both Mojo's grandmothers who took turns staying up all night soothing her) but we coped.

Now we are fully recovered the ever familiar mantra of one day at a time is very much back in play. Not in the same way as it was when life felt precarious but rather the way that I imagine all new parents feel no matter what the needs of their children!

The future, both short and long term feels a bit daunting. We have gastro tube surgery scheduled in a matter of weeks and the ball is rolling for our EHCP (care plan for schooling) meanwhile I am very much aware that babies don't sleep for 8 hours of each day for long!! Repeat mantra.

Diagnosis Day #3

Sometimes 2nd August 2011 feels like yesterday sometimes it feels like a million years ago. Either way the memories and emotions it evokes are the same. Staring at the grain of the wood of the table on which I laid my head after putting the phone down. Before the immediate shock wore off, before the crying began, before, really, the magnitude of the conversation had hit, before I'd even called Bill just those few seconds of blank shock. Those few life-changing seconds of comprehension. That's mostly what I remember.

Today however is not about that. Or at least it's not about rehashing and reliving that. Today it's about recognising how far we have come. It is remarkably easy to forget, to become focussed on the problems of daily life and the barriers Mojo faces. Reminding myself of what we (like all of the friends we have since met who experienced the same diagnosis meeting) were told about our unborn baby, brings into very sharp focus quite how truly completely and spectacularly awesome our little girl is.

So in the spirit of a picture saying a thousand words (believe me I could!) here is my nod to this year's diagnosis anniversary using the words of the consultant in that first diagnosis meeting.

"It is very unlikely that your baby will survive to term"




Beginning to believe baby has not received memo!

"If it does it will have little or no quality of life"

Hanging with my daddy. Quality.

"It is unlikely your baby would be able to perform basic functions such as breathing and swallowing"

Breathing while I swallow this enormous ice cream

....and this pasty!

"The front of the brain is where we store our personality and your baby's fore brain is completely fused seriously damaging all the faculties we store there"

When I grow up I want to be a princess.....

...OR a ukulele playing Buzzy Bee?

"Any kind of normal life cannot be expected"

Is it normal to beat mummy at bowling?

or play with my farm?



or wave on the waves?

and finally, as I have to say I really did like our consultant and he wasn't being intentionally completely wrong....

"Of course there are sometimes miracles..."

 

Thankfully for us the only element of the whole meeting which turned out to be accurate was the bit about miracles. Our amazing girl. Our miracle.