Wedding words of wisdom

Should you ever find yourself researching raising children with disabilities, one of the first things you are likely to come across is an article by Emily Perl Kingsley called Welcome to Holland. It's very well known, widely reproduced and generally accepted as an appropriate analogy for the unexpectedly tangential lives parents with complex children lead.

The article addresses expectations. The ongoing contrasts between the should-have-been and the reality. The never-ending succession of things which have the potential to trigger comparisons and therefore, grief.

These comparisons are more easily drawn when dealing with something where expectations are already running high. Things like Christmas, summer holidays or, as was the case for us this weekend, a family wedding.

I am very close to my siblings, they are incredibly important to me (remember Sibling Revelry). So watching my brother wed the love of his life (and I have lucked out in the sister in law stakes too) was a big, exciting, deal.  My brother has a very special relationship with Mojo they have a kind of unspoken bond that has been evident since she was very little. As if that wasn't enough Mojo and her little sister were to be flower girls, pretty dresses, pretty hair, sparkly shoes the whole lot.

It would be very easy to self-indulgently feel sad about the differences between Mojo's experience of being a flower girl and those of an average 4 year old girl. Dress shopping involved me wrestling dresses onto her while she tried to eat them or hide behind the netting in the skirts. There was no 'give-us-a-twirl' and she had no opinions to share (other than perhaps, which offered the best opportunities for chewing). I flirted with feeling sorry for her (and myself) that day, until she started belly laughing at me trying to get the dress over her non-cooperative elbow. I was making the mistake of presuming that the only way something can be enjoyed is in the traditional, conventional way.

And so it was for Mojo's whole wedding experience. She travelled to the wedding wrapped head to toe in towels as I was terrified she would be sick on her dress. The beautiful braids which were very carefully put in her hair by the hairdresser lasted approximately ten minutes before she ripped out the bobbles and clips and restored her characteristic bed head look. How she laughed.

We adjusted her dress to fit her Upsee (an amazing harness made by Firefly which allows non-mobile

children to 'walk'). This meant she could experience walking down the aisle alongside her cousin, rather than in her wheelchair. I'd given this a lot of thought and we'd measured up and dress rehearsed well in advance. We didn't however, rehearse in the tights she was wearing on the day. So when we came to strap her feet into the foot pads in the church her tiny feet slid clean away from her shoes leaving her floating fairy-like a couple of inches from the floor. When it was clear that the shoes were not for staying put, we dispensed entirely with the footpads. Initially my conventional sensibilities felt a pang that she wasn't going to be able to 'walk' like we had wanted her to. Seeing her float delightedly down the aisle like a particularly giddy fairy holding tight to her cousin's hand left those thoughts in the dust.

As ever, Mojo ended up doing things in her own unique way with a huge smile on her face.

I got my proud mum moment and my proud sister moment and there were happy tears all round.

It wasn't just in the Kodak moments that I found peace with the parallel experiences of a non-conventional flower girl it was in the little things, the unplanned, expectation-free moments. Seeing the bride leaving the top table half way through dinner to check in on Mojo who was tucked away enjoying some ipad down time, really moved me.

Love is...

For a day so filled with unusual activity, new people, loud noises and minimal down-time Mojo naturally had her moments and so subsequently did I!. I can't pretend it's always easy to ignore the comparisons but it's only me who struggles, Mojo is completely unconcerned. That is what I need to remind myself of when things feel a bit 'Holland'.

At the wedding reception each guest had a card on which to write their words of wisdom for the newlyweds. I was distracted trying to keep Mojo entertained and happy and fed. I'd just spilt an entire bottle of feed on my cream shoes. Unsurprisingly I had a total mind blank. I didn't have a single word of wisdom to offer. It was only when I had time to reflect on the day and indeed reflect on the five years since I married my own Mr Right that my 'words of wisdom' arrived. And so...


Dearest G & D,

Be happy, be truly happy. There are no rules about how life should be enjoyed. No formula for contentment, your happy doesn't have to look like everyone else's it just has to make YOU happy.

Be prepared for happiness and joy to come heavily disguised, sometimes convincingly disguised as disaster or heartbreak. Be prepared to look and to find joy in unexpected places. There is beauty in learning to value each individual moment of joy, all the love and all the laughter. Embrace the grey, the difficult days and the challenges, the tears. These things don't spoil the happily ever after they enrich it, they build you and they reinforce your love.

You have done the difficult part, you have found each other, you looked further than most would ever dream to, you overcame an ocean of obstacles. Your story will be unique and beautiful. If you always look to each other first in all the happiness and in all the sadness there you will find your reason, your purpose, your anchor in the storm.

Be happy, be strong, be together. We love you both.
L, B, M & C
xxxxxx

Hospital Hangover

My head hurts.

You know when you get to an age that hangovers last for three days and you are forced to adjust your boozing behaviours accordingly. A hospital hangover feels very much the same. Dehydration, exhaustion, nausea, dizziness and difficulty stringing a sentence together. There is also the added sense of injustice that all of this isn't because you had an awesome night out but instead is a result of a tortuous, sleepless, stressful 48 hours.

Despite the fact that we live in a constant state of vigilance when it comes to Mojo's health it is all too easy to lapse into complacency. Particularly as we head away from winter and with a reasonable stretch of good days under our belt. So it was something of a shock to feel the resignation which accompanies the realisation that a midnight A&E trip is on the cards. I was sitting on the floor by Mojo's bed watching her writhe in pain, completely helpless to do anything more to help. If there is anything worse in the world than being unable to help your children when they are suffering then I hope to God I am spared it. It feels like torture and even in my most pragmatic frame of mind, behind the fear and the worry is a seething anger that she has go through this again.

When she gets like this I find myself mirroring her as if by doing so she will feel less alone, less scared. When she loses her breath, I hold mine, when she arches in pain, I do the same. I breathe deeply with my hand on her chest as though I can get the air from my lungs into hers by touch alone. I stroke and soothe her even when she is beyond soothing.

It's the way she looks at me when she is really poorly that devastates me. Mojo has always had an air of maturity about her, an acceptance of her challenges and limitations and the unweilding strength of character to do her utmost to battle them. The look in her eyes when she knows she isn't winning the battle is just truly heartbreaking. It's a look I've seen far too much of.

Her feelings are so transparent that I think we are both aware that the 'fun adventure' to the hospital pretense is more for my sake than hers. Everything feels worse in the middle of the night.

After four hours in A&E tests and observation we arrived on the ward just as the sun was rising, which was, in equal measures, pretty depressing and completely beautiful. I wanted to feel sorry for myself and I was close to tears with tiredness but it's exceptionally difficult to feel bad watching the sun rise. I thought of the day I chose the name for this blog and rolled my eyes at my own sanctimony biting me on the ass.

While, thankfully, the actual experience of the hospital was mercifully brief and uneventful this time around, the hospital hangover has been spectacular. Maybe it's because I wasn't expecting it, maybe it's because these days there isn't any opportunity to recoup because 'mummy is knackered darling' doesn't really wash with an energetic toddler in the prime of her boundary pushing years. Either way I've been staggered by how difficult I have found it to shake this one.

While I've been trudging through treacle to get through the day Mojo has bounced back with her usual style. It never fails to amaze me how, once the worst is over, she is back to herself within a day or two.

Needless to say all of this week's drama has been entirely my own fault.

'Things are pretty rosy at the minute' I wrote merely a week ago.

Oh really, overhear the germs....right'o.


Will. I. Never. Learn!!

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

Morning haze and zoo days

When Mojo wakes up in the morning she cries, little sobs to start with gaining strength the longer it takes us to reach her. It's quite heartbreaking sometimes. I commented to my husband that I hate how it takes her so long to wake up properly in the morning. He laughed.  'She wakes up EXACTLY like you' he said. 'You might have the adult social filters to not sob openly but I feel it radiating from you when you stir first thing. If you could sob until you wake up fully you would!' He's so right. It has weirdly made me better able to deal with Mojo's morning meltdowns, once I realised it wasn't necessarily some sinister complex thing but instead just an inherited resistance to getting the day started I knew how to deal with it (it's okay to put espresso in a feeding tube, right??)

Morning sobbing aside things are pretty rosy at the minute. This weekend was Special Children's Day at London Zoo. We first discovered Special Children's Day when a group trip was offered to us through the Enhanced Children's Centre we are supported by. That was four years ago and we have been every year since. It just seems to fall at the perfect time of year when the weather is turning warmer so Mojo's long suffering respiratory system is finally getting a bit of well earned rest from winter bugs and we're ready to play out.

It is a great day out at the Zoo with additional support and entertainment in place for children with additional needs. Some of the entertainment is more of a hit than others. The giant costumed animals at the entrance for example, are best avoided in our case as they induce Mojo's full scale scared face!

Mojo's little sister is mobile and engaged in the concept of a Zoo day for the first time this year and it was a joy to watch them sharing the experience with enthusiastic oooh ooohs and rooooaaarrs. The pair of them mimicking the giraffes sticking their tongues out to eat was too adorable.

Giraffe impression!

The thing about doing something annually is that I really notice the developments that Mojo has made since the previous visit. This time it was simple things like the choosing of which animal facepaint she wanted. Last year she needed guidance and heavy suggestion and this year she was totally clear that she wanted to be a zebra because she was wearing a stripey tshirt, like a zebra!

The additional facilities provided to help families like us do make the day much more enjoyable even despite the rare occasions when my mind was blown by the staggering ignorance of adults ducking under a barrier during a display to stand full in front of a child in a wheelchair!! Also disasterously the boiling hot weather lead to a total ice-cream sell out across the park, with the exception of Rum & Raisin (turns out it needs to be hotter than the surface of the sun before anyone is tempted to eat Rum & Raisin, who knew!)

These minor frustrations quickly faded from my mind when we took our seats for the Singing Hands performance. Arguably the absolute highlight of Mojo's entire year the Singing Hands team bring a totally joyous, engaging, inclusive, entertaining and educational show to a packed marquee twice a day during Special Children's Weekend. If you have never experienced Singing Hands stop what you are doing this instant and look them up on YouTube. Using Makaton which is Mojo's favoured communication method the ladies from Singing Hands bring a huge range of children's favourites to life with singing, signing and visual props as well as Makaton symbols

2014

2015

2016

The sheer delight that watching them live, having watched the DVDs on repeat all year, brings to Mojo, is unsurpassed. I might have cried the first time I watched her watching them. Always happy to chat to their adoring fans the team all have an amazing memory for faces and an ability to make every child feel special when they come to say hello. I love them, can you tell?

I love our Zoo trips, I love that they are an annual fixture that we have consistently been able to attend. I love that feeling of confidence that comes with knowing that so many other parents you pass are in that (Peppa Pig style) secret club of people who 'get it'. There's no explaining to do and barely a sideways glance when you're tube feeding at the picnic table.

I also (mostly) love that it's such an excitingly exhausting day that they both sleep through the night!!

We're already looking forward to next year!

Monkey Impressions

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

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.