Wheely exciting

I've never really recognised how similarly dread and excitement present physically. I've felt off kilter much of this week. You know that thing when you lie awake at night trying to work out what it is you're worrying about? I've had to conclude that, infact, what is bothering me is excitement.

Aside from the MAD Blog award shortlist fun (which I still can't quite believe!) we have other exciting developments which are all wheel related! Are you sitting comfortably...

Not long after Mojo turned two we went for a walk on the Common and there were lots of children out on their Christmas bikes and scooters. Mojo had a lovely time laughing and watching them. I didn't think much of it but my husband got gradually quieter as the day went on. In the evening when we collapsed into our customary heap on the sofa he told me that it broke his heart that Mojo would never be able to ride a bike. Now that got me thinking. Surely someone had made cycling accessible by now?

So off I went to google and within a few minutes I had come across Wheels for Wellbeing. There it was, accessible cycling 20 minutes up the road. So it was with a degree of smugness that I produced the details for Mojo and Daddy the following Saturday morning and off they went to see if Mojo could ride a bike. I must confess that I was concerned that it might not be something she was able to do given how tiny she was and how limited her range of motion and ability to support herself.

Well, when they returned the pair of them were high as kites! The lovely people at Wheels for Wellbeing had welcomed them warmly and gone to great lengths to find the perfect bike for Mojo and her Daddy to ride together and with the addition of some extra strength Velcro to make absolutely sure the seatbeat was secure enough for her tiny body off they went. I'm reliably informed that the two of them rode round in hysterics for the best part of an hour. We have been back many times since and each time she is a little bigger and can try a different bike. It's just fabulous, and you can even get a cuppa, what more could you wish for!

Mojo was able to experience cycling and I was okay with the fact that it was fully assisted because she was enjoying it so much.

Until of course last week when the lovely Physio at Mojo's school caught me at pick up time to say that she had tried Mojo on a trike at school and been amazed by how much she had completely loved it. Might we be interested in getting Mojo her own bike and, if so, she could set up an assessment for us with the manufacturer. Urmm. YES. So later that week I came into school to see Mojo trying out the school trike. It's a while since I was moved to tears by watching her achieve something but seeing the total joy as she rode the trike around the hall was pretty special. She looked so grown up, so proud of herself and so very, very happy.

As if the cycling wasn't enough we also found out recently that Mojo has been accepted on to a scheme run by the charity QEF (Queen Elizabeth Foundation for Disabled People). The scheme loans mini powered wheelchairs with bespoke controls (Bugzis) to children who can then benefit from being able to explore their environments more independently. It gives me such happiness to imagine Mojo driving around the school corridors under her own control.

I always find it difficult not to go embarrassingly overboard in expressing how grateful I am to the teams of people that make all these keep-me-awake-at-night-exciting things possible for us. I am filled with so much love for the people who get out of bed to volunteer their time on a Saturday morning so that Mojo and her Daddy can go cycling. I am in awe of the clever people who design and build trikes, bikes and powered wheelchairs to allow children like Mojo to have new adventures in mobility.

That's really what it's all about for me, giving Mojo more independence than I had dreamed of and, importantly, the opportunity to get into so much more mischief than she might otherwise have been able to.

There follows some shameless self-promotion...
I am completely thrilled to have been shortlisted for the MAD Blog Award for Best Preschool Blog 2016. If you enjoy reading about Mojo's adventures and would like to vote for The Sun Will Come Up I would be very very chuffed if you took 5 seconds to follow this lovely link and voted Click here for voting form THANK YOU

Pure Imagination

I've often talked here about the future, the uncertainty of it and the fear of that unknown. I've had

The beginning!

cause recently to think about the past. I was completely stunned and delighted this week to find out that this blog has been shortlisted for a MAD Blog Award. One of the things that surprised me was that I found myself immediately self-conscious about people actually reading it!! When I first started blogging it was for cathartic reasons. It helped me to commit to record somewhere, what was happening to us when we were first coming to terms with having a baby with life limiting disabilities. It helped me to organise my own thoughts by explaining them to others. Since then the blog has grown with us. Hosting the stories of achievement, heartache, frustration and utter joy which have unfolded along the way. Until this week I had never sat down and read it from the beginning.

Once I had got past the fact that my use of apostrophes is truly terrifying (and my word don't I use a lot of brackets), I got lost in the memories. It's amazing how easy it is to forget what we were told at the start of our journey and what we expected of Mojo's life. It's surreal to go back to a time when we were just starting to work with Physio and Portage and all of Mojo's abilities were just hiding there waiting to be discovered. A time when communication with her was very much a one way street lined with instinct and guess work. 

I laughed out loud at the use of the term 'Paediatrician brain experts' in my first ever post because these days I can rattle off diagnoses, stats, medications, doses, test results and clinicians like an extra on Grey's Anatomy and I've caught one doctor using Wikipedia to confirm what I've told him (a non-Neurology specialist in A&E before you worry too much, but it did happen!).

Then while I was reading, Mojo, who was sitting beside me watching Willy Wonka and the Chocolate Factory (original version) started swaying along to 'Pure Imagination' and I was hit head on by a suddenly vivid memory that I didn't know was there.

The day after Mojo was born, when all the family, nurses, doctors, students, cleaners and passing dignitaries who had been in to marvel at the miracle baby had gone and even my husband had gone home to get some sleep. It was just me and Mojo for the first time. We were in a side room completely alone and we stared at each other silently. After a while she started to cry and knowing that she was fed and clean I was out of ideas as to what to do. I reached for my pre-baby playlist on my phone and lovely Alfie Boe sang 'Pure Imagination' to us both and Mojo stopped crying. I played it again and again and again that night, until my battery died. How could I have forgotten about that for this long?

'Anything you want to, do it.
Want to change the world?
There's nothing to it.'

The final thing that was very evident during my indulgent retrospective reading was my pride in her. I am always proud of Mojo, I am proud every single day of her determination, her strength, her achievements, her capacity for love and her bloody hard work. I would have been proud of her even had she never hit a single milestone. I am proud of her simply for being her. This week though, embarrassed as I am to admit, I have allowed myself to be a bit proud of that terrified woman in August 2011 who reached for her computer and started to write.

Image with thanks to the fabulous Mel Wilde Photography

She aint heavy....at least not yet!

 It's officially spring! We have survived another winter. I know that sounds very melodramatic but back in September with winter stretched out before us like an obstacle course of sleepless nights, infections and potential complications, March seemed like a distant utopian place and yet...here we are. Our tally for this winter was one hospital stay and two serious infections none of which caused us any major drama so I'm calling it. That was a successful winter. High fives all round.

To prevent us from luxuriating in our success for too long our next hurdle has arrived. This one arrived very inconspicuously one Tuesday afternoon in the form of a routine home equipment review by our OT. I was anticipating negotiating a change of home seating system, given that Mojo has grown so much of late that her old chair was becoming unusable. I was prepared to talk about her bath seat and take advice on rotating car seats. All of which happened but the second stage of the meeting took me by surprise. We started talking about how much Mojo had grown and how much she now weighs. We talked about manual handling and I was casually asked if Mojo would be moving downstairs, to live in the front room. My instinctive thought was 'ground floor in a street facing room on a road that we know is frequented by car thieves' not likely! By the time the OT started talking about hoists, lifting equipment and moving an entire bathroom downstairs (in our mid terrace two roomed house!!) I was reeling somewhat.

As a family we have always, perhaps misguidedly, prided ourselves on our ability to live as conventionally as possible, We adapt our routines around Mojos needs but unless you know us well our lives appear very ordinary. We have encountered that feeling of difference since Mojo started using a wheelchair rather than a buggy but, more often than not, most people think the wheelchair is a buggy and we are regularly asked to leave it outside when we're accessing venues and have to explain that it's a wheelchair. Pre g-tube when we had NG tubes in and were out and about that caused us to notice our out-of-the-ordinariness but those periods were usually brief and quickly forgotten. It's not that there is anything wrong with being different or having bespoke requirements of the world, it has just come more naturally to us to try and make life as conventional as we can.

Home is the place where everything has always felt easy, we are just us, we evolve and adapt along the way and it works, we are happy, home is our safe place. Asking us to move Mojo's room to the ground floor feels like an invasion of our privacy. It challenges my most cherished faculty. My control.

I'd challenge you to find a parent of a complex child who isn't a control freak. It's what keeps us sane. We are gatekeepers, diary managers, nurses, financial advisors and therapists. We know best and woe betide anyone who infers otherwise.

It brings out the inner teenager in me when someone tells me I can't carry my daughter up to bed anymore, or lift her out of the bath safely. I feel defensive and resentful. I get a bit 'how dare you tell me...blah blah blah'. Then I take a deep breath and recalibrate.  They have a point. I'm 5' 1 and 8 and half stone (ish).

The problem is not really a logistical one, it's psychological. Having to live on the ground floor feels restrictive, claustrophobic (certainly in this house). I wouldn't want to do it. Installing hoists and rails to our home to replace our arms and hands when moving Mojo feels impersonal and clinical. I reluctantly accept that having to adapt the house is an inevitability but it's a tough one nonetheless, because it serves as a reminder that the future is coming and things are going to become much more difficult physically for us.

We must therefore find a way to move forward and adapt which includes meeting all of Mojo's physical needs at home in a way that keeps home feeling like home and Mojo feeling like Mojo rather than a patient.

One thing that is clear is that this house isn't going to work for us. Hello rightmove my old friend.

Oh and I joined a gym. Free weights anyone?

A pretty big tagline in the circumstances but worth a try, eh!

A Mother's Day Story

Once we had established which local library was open, my mum in her usual style, had Mojo wrapped up, in her wheelchair and 'out of my hair' in minutes. I was left with a golden hour of alone time. My mum has been doing this since Mojo was born. Whether it was giving me time for a bath, a sleep or a battle with a DWP form she's always been there. It helps that Mojo is such a good shopper, the two of them wander around the shops admiring and choosing. They love each other's company.

When they turned up later with a huge pile of library books and ear to ear grins I knew it had been another successful trip. 

In the library they had found the perfect book. It was about a little girl shopping with her Granny. Shopping for a present for Mummy. It was one of those occasions when a book reaches out to Mojo and she had the story/signing verbaitum within one or two reads. Now I must warn you that in detailing this story there will be significant spoilers for the gorgeous story 'A Present From Lulu' by Caroline Uff.

It's a beautiful picture book with big print writing. It opens with Lulu shopping with her Granny, thinking about what her Mummy might like as a present.

Now 'thinking' is something we do a lot of in this house. We think before we make choices. When the act of pointing takes the kind of effort that the average person would have to expend to, lets say, run up a flight of stairs, thinking carefully is an important mechanism to make sure we know what we want to say, or choose, is the right thing! Mojo and her sister both do the same thinking sign, finger to the mouth, hmmmm, classic thinking posture. They have learnt it from me and their doing it has exaggerated my own use of it. It doesn't speak well of my parenting, or my waistline, that frequently my youngest points at the biscuit cupboard and does the 'thinking' gesture. (It doesn't speak well that we have an entire biscuit cupboard but I digress).

As the book continues, Lulu and Granny explore the shops ruling out various options, cuddly toys, books, chocolates, sugar mice, smelly candles, floaty scarves and sunglasses. Finally Lulu finds a sparkly necklace which is 'perfect'. The book ends with Lulu giving her Mummy the necklace.

During the few days that my mum was here the two of them read that book so many times with Mojo anticipating each page, each prospective gift, with total joy.

A few days later there was much whispering and giddiness before the two of them embarked on another shopping expedition. This time they returned with a brown paper bag which was handed to me with tremendous pride.

My mum had taken Mojo to a shop which sells candles, scarves, chocolates, cuddly toys and sparkly necklaces. They had brought the story to life. Inside the brown bag was an organza bag with a tissue paper parcel inside.

Over a glass of wine later that night mum explained how she had lifted each tray of necklaces down to Mojo's height so she could pick one. She chose mine from the first tray and while she looked intently at each following tray she went back every time to the first one with the long gold necklace and blue sparkles. That was the one for me.

When my mum took her to the shop she didn't do it for me. She did it for Mojo. She didn't even do it alone it was completely conspiratorial. They did it. Together. For me.

It's present that means so much more than the gift itself.

When I write a Mother's Day card to my mum I find myself thanking her for the train fares and the babysitting, the housekeeping help and the all encompassing 'everything'.

In our case I think that everything covers a little bit more than the physical helping and the emotional support. It covers being the foundations underneath my own mother/daughter set up.

Mojo can't use words to tell me she loves me she uses signs and looks and carefully thought through actions and I know, I feel it.

I can and regularly do, say 'Thank You' and 'I love you' and I write cards and buy presents but I still find I can't articulate how deep that gratitude is. So like my own daughter I will just try to use actions and signs and maybe blogs to try and express my gratitude and my love.

Happy Mother's Day.

Mojo's Microcephaly

Mojo has Microcephaly. I don't think I've ever told you that. Not that it's a secret of course it's just that, for us, it has always been secondary to the Holoprosencephaly. Microcephaly sits on her list of clinical diagnoses unmentioned, untreated, it just, is.

A few hours old with her Auntie

Simplistically, Microcephaly means having a clinically small head. Look it up and you see that, like many complex conditions, there are multiple causes including chromosomal and infection. Holoprosencephaly is listed 17th on the list of chromosomal causes on Wikipedia. Mojo has a microcephalic head because the two hemispheres of her brain are fused at the front. Her horseshoe shaped brain is small and therefore, her head is small and for us, aside from occasional hat shopping incidents, I don't give the visuals of it much thought.

  That sounds spectacularly dismissive given the fear and furore which has spread across the world with the news of the Zika virus and it's association with Microcephaly in infants. I don't mean to be dismissive, not at all, I have been deeply moved by the footage of babies across the world with the familiar head shape which Mojo and many of her friends share in common as a result of their Microcephaly. Familiar is the operative word because when you associate your own baby so closely with other babies they feel familial. I have the urge to protect them, love them, tell them how spectacular they are, tell them it's going to be okay, there is life after diagnosis. Not least because the world continues to refer to them as defective. How I hate that term, birth defect.

de¦fect

NOUN

1. a shortcoming, imperfection, or lack:

These babies are not lacking, have not fallen short and are no more imperfect than any of us.

Before you think I'm running some kind of PR campaign for the joys of the Zika virus I, naturally, agree that all possible measures should be taken to avoid its spread and to prevent what would otherwise have been healthy babies being affected. I just wish that the babies which have been, didn't have to be used as a cautionary tale, held up as examples of how awful the virus is. Look at this 'alarming and disturbing' (direct quote) thing that could happen to you. It just makes me feel deeply uncomfortable. I suppose realistically, I know that nobody would ever choose to be in our shoes but to have it underlined so repeatedly, so publically so universally is disconcerting.

On the flip side, as a result of all the news coverage, I have watched and read some very positive 'living with microcephaly' features too. I have also, however, made the rookie mistake of reading the comments under these articles.

Now THAT was alarming and disturbing.

Scrolling through the views of a surprisingly large number of people claiming that anyone who chooses to continue a pregnancy once a diagnosis of Microcephaly had been made is selfish. To bring a child into the world to suffer is cruel. To dare to have another child if your first happens to have a genetic imperfection is reckless, selfish, stupid. Oh the opinions, the vitriol, the voices of all these people without the first idea about my life or my children freely advertising their distain for me, for us, for those with disabilities generally was truly shocking. Not, of course, that any of the comments were for me, these particular judgements were being cast around about a different family facing different, albeit similar, challenges.

So when Zika falls from the news agenda and the newly diagnosed parents begin the reality of living with a child with complex disabilities after the eyes of the world have been diverted. What then.  

For what it's worth, here is what I have learnt. Every single child will write their own story, do their own thing, irrespective of diagnosis, prognosis, text books and World Health Organisation advice. I'm not going to lie, it's hard work. The only thing we as parents can do is deal with symptoms as they arise, fight hard for the best support, not take anything at face value when it comes to can't and won't and most importantly love. Love, love, love, so much that nobody could ever question your child's quality of life because how can any life so filled with love be described as defective.

Imperfect, without question,

Defective, absolutely not.

Dude, where's my Karma?

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

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

What we got back of our car!

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

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

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

I veered from pragmatic to furious to pragmatic again.

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

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

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

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

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

4th Birthday fun in December

Hope in the Darkness

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

Ally's parents are good friends of ours.

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

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

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

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

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

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

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

Then.

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

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

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

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

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

Heidi's journey continues on her blog.