Sunday, 22 May 2016

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

Wednesday, 11 May 2016

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

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

Monday, 2 May 2016

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