Monday, 7 December 2015

Dear Whole Foods Salesman

Dear Whole Foods Salesman,

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

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

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

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

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

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

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

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

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

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

Best wishes
Lizzie (the one who cried)

Tuesday, 17 November 2015

A Sweet Base Line

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

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

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

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

Each page features pictures of her doing these things.

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

But indulge me while I list my favourites...

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

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

 P.S Anyone remember  

Friday, 30 October 2015

Hips don't lie (straight)

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

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

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

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

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

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

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

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

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

Monday, 5 October 2015

School Belle


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

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

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

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

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

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

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

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

Thursday, 13 August 2015

Manual - Change - Reality


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

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

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

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

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

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

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

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

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

Wednesday, 15 July 2015

All change please, all change.

What just happened?

I was braced for a fight, I had logged all the communications, I'd read up on legalities and getting what you want from an EHCP (Education Health Care Plan). I was trudging the anecdotal evidence on blogs and websites. Then the phone rang.

'Just a quick call to let you know that your draft EHCP has been sent to the school of your choice and they are happy to take her full time from September.'

I'm confident that my shock was evident.

I mean it's brilliant, we are thrilled. It's exactly where we wanted her to go. It's a specialist school which we loved when we visited, it offers so much which will meet Mojo's needs. It's bright and colourful and I'm sure this isn't on the list of Ofsted requirements but it has the loveliest 'vibe'.

After first day of nursery

But to find out in mid-July has meant that our existing provision, and I mean ALL of our existing provision is changing. I can practically feel the carpet being whipped from under us and if you'll forgive the stretching of the metaphor, the fact that it's being replaced by an equally comfortable, bigger carpet is, at present, little consolation.

With less than a week's notice Mojo attended her final Small Steps before 'graduating'. Small Steps has been such a source of support for us, firstly from a practical perspective with the classes giving us the knowledge and skill to best facilitate Imogen's physical development. Secondly and as importantly from an emotional perspective. We have felt like part of a family and part of something very special. We have attended for almost two academic years and all of us have changed so much in that time. We will miss the sessions and the people very much.

Then there's nursery. Just as she's found her swing and fully settled we have to be on our way to the next setting. I was very happy that the when I picked her up on her last day she had had her best day yet, laughing, talking playing and generally having a ball. It didn't, however, help my feeling of whiplash at the speed of this transition. Nursery has been so fabulous, Imogen has progressed so much with her confidence, her verbalising and developed other new skills like identifying letters and words, significantly nursery has given us both our first independence from each other which stirs conflicting emotions but I know how vital it is for her, that we both be able to let go!

After last day of nursery!
Moving to a specialist school means all our therapists change. We will no longer see our amazing Physio who has been with us since Imogen turned one. We will have new occupational therapists and new speech and language therapists. In fact you name it, it's changing. I'm nervous about change. Change brings uncertainty and uncertainty is well...stressful. I try and limit the number of what ifs floating around in my head at any one time but all this change has really opened the flood gates for what-if related spirals.

As if all this change isn't enough, Daddy has also changed his setting which involved a little less form filling, box checking and waiting and slightly more interviews and long discussions. The whole process reminded me of the pressures he is under as 'bread winner' I get along with my days working harder than I ever did as a paid employee not really thinking about who will pay the bills (excuse pun!). Watching him dissect what a new job would mean for us as a team and how it would affect both our day to day logistics and our finances made me realise quite how much he has on his plate. I am deeply grateful to be married to someone who would worry quite so much about how his schedule will impact on his ability to cuddle his girls and make me a brew in the morning. Gosh I do so love him.

So for now we contend with our new morning routine (turns out making my own tea in the morning is a burden I can bear for the good of the team!) and we enter our limbo summer between old and new and we sit back and once again marvel at how grown up our girl is, and how accomplished and bright and spectacular she is.

Don't know how she does it?

It's one of the things that is said most often to me. By family, by friends, by people we meet out and about and get talking to...

'I don't know how you do it'
'I don't know how you cope'

Within the community of parents of children with complex needs the answer to the question is usually very simple. You have no choice, you do it, you get out of bed in the morning and you cope and eventually you're epic hard work becomes routine and therefore looks 'easy'.

My answer to this is a bit different. While I totally accept that the having no choice aspect is very true (certainly in the beginning), for me a far more significant factor is the team we surround ourselves with. In this instance I don't mean the professionals, the doctors, the therapists, the teachers, all of whom are without doubt making it possible for us to cope. I'm talking about the 'normal' people in our life. The people, in most cases, without any experience of disability to speak of.

We cope because our family embraced Mojo long before she was born. They adore her. They treat her just like the other children in the family. They meet her where she is at, whether that is physically contorting to ensure she is included or simply facilitating family time which is accessible without being contrived. We cope because when we wobble they are there, coping for us, coping with us.

We cope because our friends take Mojo in their stride. I don't mean that they 'accept' her or even that they include her because of course they should. What I mean is that they do so without awkwardness or fear in their eyes. They ask questions unapologetically about how to move her or help her. They talk to her at an age appropriate level and, believe me, even some professionals struggle to do that with Imogen. They don't bat an eyelid about sitting with her so we can have a break. They unflinchingly pass the sick bucket when she once again throws up her feed (in fairness that wasn't anything special that particular week but that's a whole other story!!).

So usually the answer to the friend who asks how we cope is, we cope because of you.

Sunday, 24 May 2015

'Like a room without a roof'

My husband and I have very strict rules about speaking too soon. You know the type of thing 'didn't they go to sleep well tonight' 'she's not been sick at all today' 'we've not been to A&E for ages' and so on. String all three together and you can pretty much guarantee yourself a wide awake, vomiting, A&E bound child.

Therefore it is one eye to the sky for falling pianos that I say quietly....things right now are great. Like really, really good.

It is one of the unspoken benefits of the lows being so low is that when the highs come they are exceptionally high and you make the effort to stop and enjoy the view.

There is nothing exceptional about why things are so good. Mojo's health has improved slightly and the vomiting has subsided at least to every other day rather than multiple times a day. This gives us a bit more freedom to be out doing things and having fun without having to take three changes of clothes, sick buckets and old tea towels. It also means that she is enjoying nursery more, learning more, generally being much happier in her new setting. There is nothing more joy inducing after weeks of dropping her off and picking her up from nursery in tears (hers not mine, although on occasions...) to suddenly find her enthusiastically taking her place for circle time without a second look to me. Picking her up covered in paint and smiles at the end of the day, signing away with stories of who she has played with and what she has done is heavenly. Suddenly that long promised feeling of respite is tangible. I can finally revel in the knowledge that our little girl is properly attending nursery like all her friends. She was affectionately described by nursery this week as a drama queen and a flirt....NO idea where she gets any of that from!

So in keeping with our make hay while the sun shines approach we have had some simply awesome family time of late. Days out at ZSL London Zoo for Special Children's Day where Imogen got to meet the amazingly lovely ladies from Singing Hands (akin to meeting One Direction for the signing child!) she had her face painted and chose the route we took around the Zoo. She taught her little sister all the animal signs and ate proper food (or animal biscuits) at our picnic. We have taken part in a community arts project building a giant cardboard tower with boxes and sellotape (search #PeoplesTower it was very cool), a completely inclusive activity where she was just one of the children helping. We've attended birthday parties, ridden the carousel at summer fairs and hosted countless tea parties for the dolls, pandas and assorted soft toys.

On top of all that we as parents have had some time out. Some time to be us as a couple and not just 'The Parents of ' as all our letters arrive to. We celebrated 10 years together with a night at an amazing restaurant and hotel and it felt like a fortnight in the Maldives. Partly because we had time away but also because we left the girls with their grandparents and nothing bad happened, the tube feeding was uneventful, they both slept and they both had a fabulous time and suddenly my worries about how we will ever be able to expect our parents to look after two kids, one with feeding tube and constant vomiting evaporated.

What is even more remarkable is that with all this fun behind us we have so much more to look forward to over the summer. We're headed to Cornwall with a gang of friends for a week, we have tickets for Elves and the Shoemaker ballet and we are even experimenting with a trip abroad at the end of the summer. In amongst all of that there is of course the inevitable weight of pending surgery dates and EHCP chasing to do as well as 'the unexpected' which we have learnt to be constantly expecting. However, our grass right now is lush and green (metaphorical grass that is, our actual garden grass is more untamed and brownish but one thing at a time eh!).

By the way my focus on Mojo for the purposes of this blog is intentional, despite rarely being mentioned her baby sister is in every way loved and cherished equally and has been busy being remarkable during this period too. Her achievements and spirit and personality are all being recorded for her in a diary for when she is older. When I watch them together I feel like my heart could burst with love.

For today I will end on a story which made my year so far that comes from the afternoon of the day my husband and I had away from the girls. We were walking around Nottingham arms around each other just generally being happy to just be in each others company without a to do list. At one stage he leaned in and kissed me, at the same time some teenage lads walked past bantering as is their want. It was a few seconds later that I processed that they had been talking to us. We'd been heckled to 'get a room' I'm not going to lie to you, we might have high-fived.

Thursday, 30 April 2015

Aspiration and Aspirations

noun: aspiration; plural noun: aspirations
  1. 1.
    a hope or ambition of achieving something.
    • the object of one's hope or ambition; a goal.

  2. 2.
    The action or process of drawing breath.
  3. The taking of foreign matter into the lungs with the respiratory current.
Aspiration. I've been obsessed.

Mojo's ongoing battles with daily vomiting and heavy congestion means that every time she is sick (did I mention this was every day) she is increasingly at risk of aspiration. By that I mean the 'foreign matter' type. Essentially, the (daily) vomiting brings with it coughing and gasping for breath and as she gasps and sniffs the vomit in her nose and throat is taken into her lungs making her cough more and gag more and once she has calmed and we've replaced the fluids, the 'foreign matter' now sitting in her lungs is busy causing further damage by creating more congestion to trigger more vomiting and thus continues the mind blowingly frustrating cycle. I will spare you the details of the multi-specialist process of trying to diagnose and treat the issue other than to say that things did not go, have not gone and don't yet look to be going our way and for each day it goes on the guilt that I have not yet been able to make it better for her increases.

Meanwhile once the sick is cleaned up and the clothes changed (can you get washing powder on prescription?) there is life to be getting on with.

This month has seen our EHC Plan meeting. An EHCP for those of you who don't know is an Education Health Care Plan and it replaces the Statementing system. By all accounts it is a far preferable process and results in more tailored outcomes for the children involved but it is by no means an exact science and is still very new. The aim of the meeting is to establish Imogen's abilities, needs, requirements, aspirations, goals and then discuss what resources she will require to achieve them and then a group of people in an office at Wandsworth Council decide if she is to be allowed those resources and how much money will go into facilitating her education. Then, from what I have read up on and been told anecdotally begins the battle with the council to ensure that we can agree on a suitable package of resources and hours. It's daunting and stressful and downright surreal to begin with. I sat in a room with eight professionals (therapists, nursery teachers, educational psychologist, rep from council etc) and we discussed Imogen and her aspirations.

Don't get me wrong I like the terminology I like that I am being asked to define her aspirations and consider what I want for her but it's such a huge question. What are Mojo's aspirations. If she could talk to us what would she say? What does she want to be able to do? What can we do to help her learn? How would ANY three year old answer those questions? I truly believe that her answers right now would be along the lines of I would like to be a firefighter or maybe a penguin. I would like to be able to fly and I would like to be allowed to chew on people's hair and pull off their glasses whenever I so choose.

I was a little more measured with my actual answers and spoke very honestly. I want her to be happy and I want her to have her enormous potential harnessed and nurtured and I want her to enjoy school and make friends and I don't ever want her physical limitations to be a barrier to her learning or her happiness. We then spent an hour and a half breaking down and examining exactly what we would need to make all of that happen. It was a positive and encouraging meeting and having arrived anxious and defensive I left feeling like everyone there (with my opinion of council rep pending, based on performance) genuinely had Mojo's best interests at heart.

The meeting made me look to the future, something I rarely allow myself to do, there is too much uncertainty and too many what if's to spend too long dwelling on what may be. The version of the future it allowed me to see is one where achieving aspirations is something which we will regularly do. It allowed me to see beyond the sick buckets and the surgery.  It reminded me once again of how far we have come. My brain returns unbidden to the 'no quality of life' meeting which plays in my head all the way home.

So first things first and we will aspire to end the aspiration and then shoulders back, face forward and focus on the aspirations.


Sunday, 15 March 2015

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.

Thursday, 5 March 2015

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.


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!

Tuesday, 17 February 2015

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.

Sunday, 4 January 2015

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.

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!