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Starting Special School - My top tips!

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As milestones go, this one is pretty spectacular. The chances are that if you are at the point of starting a special school you have already won a number of battles to get you there. When our daughter started a special school two years ago I was thrilled and terrified in equal measure.

Mojo was not expected to ever reach school age and so putting her into her uniform and taking her to school for the first time was pretty overwhelming emotionally. We were very fortunate to have found a local special school we all loved and having been one of the early recipients of the, then very new, EHCP we were accepted for a full time place.

I'd been so concerned with getting her 'in' and taking that iconic (behind a kitchen door in my uniform on my first day) photo that I found myself a bit at sea with the realities of trusting other people to look after her, to 'get' her. What if they got the medication wrong? What if they don't understand her and she feels scared? What if they underestimate her and don't push her?

I read so many articles about dealing with your child starting school but very few of them addressed the things I was feeling, so this year with two years under our belt I'm offering up my top tips for starting a Special School.

1. Harness your inner control freak.
The chances are you have spent the last four or five years juggling a carefully co-ordinated (or if you're anything like me, insanely chaotic) conveyer belt of appointments, therapies, medications and care plans. You are Teacher, Pharmacist, Therapist, Nurse. You are at the wheel of everything that goes on in their world and letting go of that wheel, even just for a few hours a day, is HARD. It took me a long time to realise that I still had control I just gained a team of very experienced navigators.

2. Love your Home-School book.
One of my big concerns was that I would lose my holistic overview of Mojo's progress, the mini milestones, the minutiae that I'd been absorbed since she was born. Home-School books were the cure for my angst. A daily diary that travels with your child detailing what they have done that day. It isn't just the knowledge that the reason they have orange toe-nails is that they were footprint painting but these mini communications can cover whatever you need them to, ours for example, details fluid balance on my request. Your Home-School book helps you to build up a relationship with the classroom and provides a security blanket in times of control angst.

3. Know you EHCP back to front.
This could easily be a whole other blog post so I'll just stick the basics, know your child's EHCP inside out and back to front. While your child is in Early Years you will get chance to review it every six months so make the most of that settling in time to ensure you are completely happy with the content and the exact allocation of support resources before you move on to annual review in Year1.

4. There is such a thing as good nagging.
This one really relates to in-school therapy rather than teaching, I've never found I've needed to nag any teachers, but therapists can vary. Many (most) are very good but there are often strains on staffing or workload and especially in cases that involve notoriously frustrating equipment suppliers things can slip through the net. I'd advise you always make yourself known to the therapy team working with your child and ensure you have direct contact details for them during the holidays as well as term time.

5. Volunteer
Because you've got nothing better to do, right? I know, I know it sounds like pretty much the least appealing thing when you have 9 million things on your to do list but in the past couple of years the friends I’ve made and the chance to help provide resources that make a difference for our children, make it totally worthwhile. If you have the chance (and the time) to volunteer in the classroom or join a PTA or even bake a cake for a fundraiser it’s definitely worth considering.

6. Don’t fall into the comparison trap
Now it’s entirely likely that you are a far better person than me and therefore this may not be a problem for you but it was a funny one for me to get my head around so I’ve included it. Not having gone through any of the usual NCT groups or mother and baby clubs I had never really been in an environment where drawing comparisons between Mojo and her contemporaries was possible. I found myself worrying that of the 5 children in her class she was by far the most physically limited and her communication was the least developed. I worried that I might have been letting her down. Should I have done more physio? Should I be fluent in Makaton? The truth of course is that there is absolutely no mileage in drawing arbitrary comparisons about children with completely different physical and intellectual abilities. It’s just plain daft, don’t do it!

And finally…

7. Remember you still know best
If you’re lucky enough to be in a brilliant school then it’s very easy to be awestruck. In general teachers who work in specialist education are pretty phenomenal people and they know their stuff. Don’t ever lose confidence in your own knowledge of your child. Your child’s needs are completely unique and you will always be the last word on what works for them. Learn from the school absolutely but make sure that they also learn from you.

So that’s my list, and if you're starting this September, good luck, you'll be fine.

'The Yoga Mums'

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When I was pregnant with Mojo I remember asking our consultant what I should do about NCT classes. He suggested, quite insightfully really, that I might find listening to other mum's (perfectly legitimate) worries about birth, difficult in the circumstances. It would be easier to go it alone. So I did.

I went it alone for a very long time because even after she survived I recognised that any re-telling of Mojo's birth story smacked a little of drama top trumps so I didn't really talk about it, or if I did, I glossed over the trauma and focussed on the joy. I got used to not really being able to talk to anyone who understood. I found friends on the other side of the world who I identified with more than I did my real life friends because they had been through exactly the same journey with their children with HPE.

So it came almost as a surprise when, a few months after Mojo first started school, I was invited to go for a coffee with a few of the other mums. Being a school-run mum at a special school is a bit different from your average school not least because the majority of the children travel from further afield and arrive on local authority transport rather than being dropped off by parents. It took me a while to work out that most of the adults waiting in reception at 3.30pm were travel companions, rather than parents. The number of parents who collect is actually quite small. You end up seeing the same faces each day. This might make me sound a bit weird but there was an instant affinity, we were all on nodding terms, then small talk terms then we found ourselves in a coffee shop up the road.

Once we had covered off how amazing the school is and how happy our kids are there. We started to swap diagnosis stories and hospital anecdotes and it was the biggest lightbulb moment I've had as a parent.

I'd found them, in real life, I'd found the people I didn't need to self-edit for. I didn't need to sugar coat our reality to. The people who understood the language we spoke in with it's medical shorthand and acronyms. It was so liberating it gave me an actual head rush. I was listening to a mother talk about her daughter's diagnosis and making jokes about how handsome the doctor was and I was nodding along in recognition. We were casually discussing PICU, brain structures, resuscitation, seizures, pain management, grief and relationship strains. We were like your average mums group swapping stories of the non-instagrammable side of life.

It was only as I caught the expressions on the faces of the actual average NCT group sitting next to us that I remembered we weren't. We totally top-trumped their birth stories that day. There are not many social situations when 'Yeah, she nearly died like 5 times' is met with 'oh god yeah that happened to us too'. When I pointed out to the others that I thought we were scaring the new mums we amused ourselves with the idea of 'what the hell kind of NCT group is THIS?' It wasn't a malicious 'them and us' thing it was just a way to cope with having the kind of life that evokes horror struck expressions in others.

From that first meeting we started to meet up regularly, we set up a whatsapp group and before long that small group of women knew more about my life than most of my friends. While the relaxed socialising is essential they also became my first port of call in a crisis. When I was scrolling through facebook late one night and saw that a child with Mojos condition had died, suddenly and unexpectedly, I was able to send an 'anyone awake' message which was met with universal, 'yep, what's up?' and moreover when I explained, it was met with total understanding, one mum recalling her daughter's oncology ward when children being treated alongside them passed away and the debilitating fear that accompanies the grief and sympathy. I had someone there to talk to until I fell asleep.

We started to support each other in more than just the crisis management, we started talking about self-care and the importance of not always making everything about the children (or at least trying!) it made me examine my life and how I see myself.

Then one day someone mentioned Yoga. I've never done Yoga in my life and I was once told at a gym induction that I was the least bendy person he'd ever met. Not for me I thought! Thanks to the enthusiasm and persistence of one of our gang the school agreed to let us use a room there on a Friday morning to set up a parents Yoga session. So I went.

Turns out getting out of my head (in a non dry white wine way) was exactly what I needed. I found the first few times I wanted to cry from the sense of release it left me with. Once I was used to the feelings of letting go I started to crave it. Every Friday morning I was left on a huge high and with a clear head for the weekend. It was quite something.

Our lovely Yoga instructor always tells us that there is such an amazing vibe in the room when we have our sessions. I think the intimacy of working out all our heavy emotions and physical manual handling stresses brings us even closer together. We can laugh, we can fall over, we can cry if we like.

I'm almost embarrassed by how much I love these women, how much I respect and admire them. How much confidence they have given me. How much I need them. We never really acknowledge it, like most groups of friends if we get a bit 'I love you man' we laugh at ourselves. I have warned them however that when we eventually get around to drinking to excess together I will definitely be the one telling them all how much I love them.

They have become my tribe.

I used to roll my eyes a bit about the idea of finding your tribe, particularly in the blogging world. I've never been any good at social media networking but the thought struck me that the other SEND bloggers I was so awed & intimidated by were in fact other real-life school mums going through all the same things as us. Why would they not want to be 'friends' with my blog? This thought led me to being brave enough to join some Facebook
groups and guess what, they are lovely and supportive and kind to each other and it's all a bit marvellous.

So my message here really is to the mums still in that going it alone phase. When you're ready and when you're able, there will be friends somewhere waiting, who get it. I say when you're ready because I wouldn't have been ready in those early years. Most of the friends I am talking about here are 4 to 7 years into their journey, I'm certainly not suggesting that the day after you receive a devastating diagnosis you're all set to find some mates for a good lol about how shit it is. But when you are ready and when you do find them, you'll never look back.

Father's Day the SEND way

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Last night I wrote a blog post for the first time in weeks, I've been really struggling lately and it was a very honest account of that and of some bad news we had recently about more surgery for Mojo. As I usually do I asked my husband to read through before I published it. As I watched him read I saw the sadness creep over his face. There was nothing there he didn't know but it was evidently difficult for him to see it written down. When he finished reading he didn't say anything for a minute and then he said 'yeah, it's good...but when you write about carrying Mojo it's we not I'.

This morning I watched as he labouriously constructed a DIY sun shade den in the garden so that Mojo could play out and a completely different blog appeared...








Dear Daddy,

Since it's Father's Day there are a few things I've been meaning to let you know these last 5 years, so here goes.

Thank you.

Thank you for having faith in me when everyone thought it was hopeless to give me a chance.

Thank you for being brave enough to challenge the neo-natal consultant who wanted to refuse me basic intervention the day I was born.

Thank you for sleeping in a chair by my hospital bed more times than either of us would care to remember.

Thank you for getting up from that chair and going to work as though you were living a normal life. You did that for us so that Mummy could be there to be my voice and my advocate and we love you for it. We know it's hard to leave.

Thank you for being there when I wake up at night. From the 4am feeds when I first started to take a bottle at 10 weeks old to the 3am feeds 6 years later it is usually your bleary eyed face I see first when I wake in the night. Your reaction time beats mummy's hands down.

Thank you for getting angry and frustrated with medics and medical admin. When we first started this journey mummy was too polite and passive and trusting. You taught her that we know best and that means sometimes we have to fight. Now mummy can fight like you and I have always been able to.

Thank you for always carrying me to the sea, for lifting me to see whatever it is my non-disabled friends are looking at, for holding me on the horse, for sitting on the floor at parties so I can join in, for facilitating my inclusion more than anyone else in the world. You are an extension of me and my life is greatly enhanced by your commitment to making sure I am where the action is!

Thank you for the laughing, the laughing until we get hiccups, the laughing through the tears, the
laughing at mummy, the laughing at life, the laughing at ourselves.

Thank you for rough and tumble, thank you for treating me like my sister, for not excluding me from tickles and rolling around on the floor, or the grass, or the sand. I bloody love it.

Thank you for being brave enough to let me have a sister, I know we are flippin hard work but I love her and I love you for bringing her into my life.

Thank you for saving the best version of yourself for me, for putting me first every time, for planning your career, your time, your day, your life around me.

Thank you for keeping mummy safe, and sane. I know that she has bad days when she feels sad and lost and scared. Thank you for lifting her up and encouraging her to fight on. She's might not be quite as strong as me and you but she does it with your help.

Thank you for being our daddy, thank you for everything that you do for us from learning all the Frozen songs in Makaton to sitting up all night just to keep me in a comfortable sleeping position.

There is nobody quite like you and we love you so so much.

Thank you Daddy.

All my love,

Your Mojo xxx

Thank you for the Music

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I know that it won't come as a huge surprise to anyone in possession of a toddler that the word 'why' is somewhat overused in this house of late. It's a recent addition to our repertoire and continues unabated from sunrise to sunset.

The basics I can manage, why do I have to eat this, why is it bedtime, why can't I climb the furniture, why do flowers grow, why does daddy have to go to work, why do I need a bath, why can't I take your ipad as my show and tell... and so on and so forth. But then every once in a while....

On the school run, Moana soundtrack blaring

'Mummy why can't Mojo sing with us?'

Boom. That one stung.

It's not that I've not been prepared for her to ask questions, quite the opposite. We regularly talk about Mojo's legs not being same as hers and Mojo's special food tube and even Mojo's signing but it was the specificity of her question that moved me. It had just occurred to her that Mojo doesn't sing and she didn't know why.

I suppose it got to me because of all the things that Mojo loves, music is the one she loves most. If Mojo could sing, I imagine she would, just as her sister does, sing all day long.

I cleared my very dry throat and explained that just like Mojo doesn't use her talking voice in the same way as you and I, she also doesn't use her singing voice in the same way. Mojo sings in her own way.

A few days later we were all together in the car, starting out on our Easter holiday down to Devon and listening to the Mamma Mia soundtrack (don't judge me I've worked hard to wean them off twinkle twinkle and this is where we ended up!) when 'Thank you for the music' came on. Mojo suddenly became very animated, wriggled shouting and waving her arms. Then as the chorus started she signed, she signed every bloody word of the chorus. I couldn't understand how she could know it, it's not one I've taught her and then I remembered. A few weeks ago her teacher told me that Mojo had joined a Makaton Choir at school, they rehearse every week and she loves it. Now I don't know for sure but if I think I have a pretty good idea which song they are working on. It's completely perfect.

Look, I said to her sister, look, this is how Mojo sings. By the end of the holiday all of us were singing and signing Thank you for the music, including my non-Makaton using sister and her children.

Then we all sang together, and Mojo sang with us.

Anaesthetic Angst (Again)

My youngest is very two right now. Tantrums, disobedience, wanton boundary pushing, wilful destruction. She's also simultaneously, infuriatingly adorable.

At bedtime, when she is at her most adorable, she likes to talk about what is happening next, the next day, the next week, or more often the next party. So tonight when she asked me to tell her what was happening next I led with the fact that she would be seeing her Granny and that it was because Mojo was going to hospital for a little operation. I told her it would be a busy and fun week, happy with that she went off to bed.

Ten minutes later she was shouting for me, crying and distressed.

'MUMMY'
'What's the matter baby?'
'Mummy....I don't want Mojo to go to hospital I want her to stay with me at home'

Never has a sentence uttered by a two year old nailed how I'm feeling so exactly.

Only after I'd told the story of when she was born (at a hospital) twice did she settle and accept that there was nothing to worry about. I must have used every possible derivation of 'don't worry' during my talk down.

Then I sat, with wine, and I started writing this.

God I hate surgery. I hate everything about it. The pre surgery meeting when you get five to seven minutes of face time with a consultant who has a way of phrasing things which makes you forget every question you had or that asking them would be ridiculous. 

I hate the build up, I get almost manic. Honestly, if you want something done ask me a few days before an operation and I'll have it done within the hour. The decking in our garden has needed a clean since we moved in four years ago and today I jet washed it, then I repotted six bedding boxes and batch cooked two meals. 

I say all of this in the knowledge that we have had it incredibly easy compared to many parents of children with complex disabilities. This is only her third general anesthetic and it's officially an uncomplicated surgery. My problem is that I spend my whole life managing the factors which regulate her and keep her alive and I don't like having to surrender that control. Before we even get to the surgery itself there comes the nil by mouth period beforehand. Thanks to her Diabetes Incipidous, it goes against everything I know about keeping Mojo alive to deprive her of fluids. Even in a carefully managed, clinical setting it just makes me edgy. 

Then of course there's the consent form to sign, in all it's terrifying we-promise-to-try-and-save-her-if-it-all-goes-wrong glory. 

But in the end it has to be done. 

Tomorrow I will hold her while she goes under and be there when she wakes up, and in the period between I will pace, drink tea, pray and check the flashing pager every thirty seconds (yep like the ones in the M&S cafe except at the end you get the feeling back in your body, rather than a cheese panini) 

All of this build up, adrenaline, fear and disruption is a reminder of how un-normal our life is sometimes. It also served as reminder to me of how dark my sense of humour can turn at points like this. I recently had a message from a friend asking if we could visit this weekend, I rushed out a reply saying that it would depend if Mojo recovers well. 'If she does, we will be there' I wrote. Except I didn't and in fact when I re-read it, the message I sent my friend said 'if she dies, we'll be there'. I swiftly followed it was some expletives and an explanation but it really made me laugh. Which obviously then made me feel agonisingly guilty. 

The other thing I need to be wary of in relation to procedures like this one is pinning all my hopes on it being life-changing. This adenoidectomy should assist Mojo with her breathing, swallowing, excess secretions and even her eating. If it is able to achieve even half of what we've been told might be possible it would be amazing. If it improves her sleep that would be life changing not only for her but for us. All previous life-enhancing procedures have brought with them new problems, different challenges to adapt to so I await the curve ball which will appear once the dust settles this time around.

While this update is heavy on the self-indulgent angsting the last few weeks have also brought with them some of the best proper family times we've ever had. Not least of these highlights was the weekend we cared for the school baby chickens. I made a bit of a mini vlog mostly because my family were astounded that I, being reasonably pet-phobic had agreed to care for 9 chickens in my kitchen and wanted to see how I coped! Follow You Tube link to witness our pet prowess...

Click Here for Team Mojo's Chicken Adventures

Oh and P.S. say one for us tomorrow if you're so inclined.  

Is that your final answer?

I recently took part in a parents evening for families who are going through the process of making the decision as to whether to send their child to mainstream school or special school.

I was there to tell our story and highlight the factors which led us to choose special school for Mojo. It felt strange to be asked to do it because it made me recognise that Mojo and her friends are not the babies anymore. We have successfully navigated this hurdle and emerged with a story which shifts us to expert status. It was an opportunity to help those about to begin the inescapably arduous task of securing an EHCP with the right support package for their child, in the way that other families helped us when we were starting out (although two years ago literally nobody knew what the hell to do with an EHCP form but that's another story). 

The parents I spoke to after the presentation were mostly full of confusion, stress and conflicting emotions. All very familiar things from our own journey. I could completely understand why they were feeling so torn given that I, being completely confident that Mojo is in the best possible school for her needs and is progressing beautifully, came away with concerns that I'm not doing enough to ensure she spends time with non-disabled children of her own age and what she might be missing out on by being 'in a bubble'.

In the end I came back to my Dad's advice, which as a teenager I used to think was depressingly glass-half-empty but the older I get the more I see the truth in it. He always says that nothing in life, nothing at all, is ever completely good or completely bad. We just make choices based on what we think is the best thing to do at any one time.

Parenting a child with disabilities involves so many decisions regarding care, health, support therapies and communication. I find advocating for my daughter in a world where I frequently feel out of my depth and feel like the least qualified person in the room is daunting. Trying to make the right choices for her. Desperate to get the answer right. Desperate for there to be a right answer.

Often there simply isn't a right decision. There are just decisions. Some feel like a small step in the right direction and others feel like a giant leap of faith but each one shapes what comes next and each one builds (or tarnishes) your confidence in trusting yourself to make these decisions.

While we can feel relief that we have, so far, made choices which have turned out to be absolutely right for Mojo regarding schools and education, I still find the medical decisions the hardest to come by. The sleepless nights come from worrying about not doing enough to ease Mojo's health struggles.

We recently made the choice for Mojo to have more surgery. A simple, hopefully uncomplicated adenoidectomy and grommet insertion. Why is it that the simple surgeries are the ones which trouble me the most. It's like I'm poised for something to go wrong during an avoidable procedure, one we've chosen to have to improve her quality of life, rather than a medically necessary operation. The weight of advocacy when it comes to putting her at any risk can feel a bit suffocating if you over think it. Over thinking? Me?

It may well be that it is her frustration with my decision making which has motivated Mojo's recent developments with communication. Our essentially non-verbal girl has started to become a bit of a chatterbox. The noises and squeals which have always been part of her vernacular are become more formed, more intentional. There have been times lately when I hear a word, a whole recognisable word and it's come from Mojo. She shouts for Daddy when he gets home. She answered the question the nurse asked her with the word 'sticker' clear as a bell. She has even learnt to say her BFF's name. As if that wasn't exciting enough, her fine motor skills seem to be keeping up with her vocalisation and her Makaton signing is shifting from Mojo-approximations of words and letters to sharper more obvious signs which are far more easily recognised by other Makaton users. These developments are very exciting for us. Mojo has raised a bar which I had taken my eye off, I'd been looking at the communication book while she decided she'd not given up on verbalising just yet.

In the end the choices we make only go so far and the real decision making is done, instinctively, by Mojo herself. I might think I'm in charge but ultimately it's always in her hands.

Who DOES that?

When Mojo first got her wheelchair it was so exciting. This small buggy like chair which was fitted to support her needs exactly. The length of each bone in her legs was measured, the exact angle to best support her difficult hip joint, the correct strap lengths to support without limiting her movements. It was a prescription chair, bespoke and truly liberating for her to be able to have a 'grown up' chair of her own.

Mojo's first fittings

Since then the wheelchair has been everywhere with us. It is battered, scratched, it's been covered in food (and sick, lots and lots of sick). It's been on the receiving end of a significant amount of what my granddad used to call Navy language as I've wrestled with it in the pouring rain or caught my foot on the brake which clamps shut like a vice. We've driven it over beaches, cobbles, woodland trails and approximately one million muddy puddles. It's been on buses, trains, boats, aeroplanes, even a horse and cart. It's almost like a pet, its something that comes everywhere with us. We love it, it is a part of Mojo and it gives us all far more freedom than we could have without it.

The only problem we've had with it is it's size. Living in a Victorian terrace, space is not abundant so during the week when it's used just for the school run it lives in the boot of the car. When our car was stolen last January we thanked God that we had removed the chair from the boot the night before. Imagine we said, what we would have done if that had been stolen.

Fast forward a year, almost to the day, and I arrive outside school (late, as ever) on a freezing cold morning and open the boot to get the chair out only to find it's not there. My first thought was that I'd forgotten to put it in the boot but I knew that we hadn't used the wheelchair the previous day so it was definitely in the boot.

Flower girl throne

Someone had (and don't even get me started on the how) broken into the car, stolen the wheelchair and a box of Mojo's medicinal milk. The realisation was a slow creeping one but when it hit, it hit hard.

COVERED in food

I think I must have repeated the words 'WHO DOES THAT?' thousands of times over the course of the morning. I felt violated, worse I felt that Mojo had been violated, that someone had stolen a part of her, someone had stolen her legs. I felt that I had allowed that to happen, that I'd not protected her from it.

I cried with anger as I carried her from the car to school, it was the only choice I had. She's too big to carry these days and it felt undignified. Despite my carrying her regularly at home, out and about feels different. I was so deeply sad and so blazingly angry.

I've had to tell myself that whoever took it mustn't have known what it was. That they must have thought it was a fancy pushchair. I don't even like to think about where it might be now, dumped somewhere, sold for scrap? It's not like children's NHS wheelchairs are a typical stolen to order item!

Mojo in her usual style thinks using her little sister's old pushchair is hilarious, she laughs when I put her in it. She's got the right idea, you have to laugh. Later that same day when, still completely distracted by the morning's events, I managed to lock myself and our youngest out of the house with no house keys, no car keys and a phone with 6% battery life, I did laugh. So did the locksmith. So did the afterschool club who had to look after Mojo until I made it to school.

Always on the lookout for the brightside, all of the drama of Monday did distract me from dwelling too much on the fact that Mojo's next surgery date has been scheduled. A meeting to discuss the specific dangers of sedating such a complex child is imminent and endocrinology are drawing up a Mojo-friendly fluid plan.

The two positives I chose to take from the stolen wheelchair saga are as follows. The NHS is just amazing. Within a week Mojo will have a replacement chair. It won't be as bespoke as her own chair but it will mean she doesn't have to be carried or use a baby buggy for long. The other overwhelming positive is that I have a really remarkable support network of friends, family, school and even neighbours who made me feel better with both practical support and just by sharing my outrage and reminding me that I shouldn't give up on my faith in humanity just yet.

Five years

Today Mojo is 5 years old.

Five years since we waited, braced, terrified, hopeful, to meet our baby.

Five years since you waited seven minutes to take your first breath.

Five years since we were wheeled down the corridor of the maternity ward to applause.

Five years since the night I lay awake in a side room at the hospital just staring at you. Trying to get my head around how someone so tiny and vulnerable could be so strong and resilient.

Five years.

Five years of caring, of revolving around you.

Five years of newborn sleeping patterns.

Five years of learning. Medical acronyms, Makaton signing, how to negotiate, how to get the right care, how to say no.

Five years of living on standby for a crisis.

Five years.

Five years of worry. Are we doing this right? Should I be doing more?

Five years of coping, compromise and copious amounts of Calpol

Five years of exhaustion of an unprecedented magnitude (we used to be sleep people, lie in people, duvet day people)

Five years of never, ever, being on time, for anything, ever.

Five years

Five years of explaining, 'it's a bit like Cerebal Palsy'

Five years of interpreting the smallest of noises and hand gestures

Five years of going completely grey (Less silver fox, more completely grey work horse)

Five years of administering physio, manual lifting, adapting.

Five years of carrying you up to bed

Five years

Five years of knowing that not for a single second on even the hardest of days would I have chosen any other path for myself.

Five years of catching your eye across a room or in the rear view mirror and feeling overwhelming gratitude because you're there, meeting my eye, returning my smile.

Five years of pride, of awe, of amazement (how can people be giving me credit for you, you're so much braver, tougher, resilient, determined than me. Than anyone I know).

Five years of the most rewarding 'job' I've ever had

Five years more than we were ever supposed to get.

Five years of love, laughter, joy and living each day purposefully.

Oh Mojo, how we love you. Happy Birthday our spectacular girl, I run out of superlatives to describe you and the effect you have on our lives. Thank you for all the fighting you do, thank you for letting us witness your amazing feats for these past five years.

Here's to the next five. We'll try to keep up.

A letter to my 'other one' on her 2nd Birthday.

My youngest is rarely mentioned in this blog but yesterday I wrote her a letter and today I wanted to share it with you because while I bang on endlessly about the amazingness of my big girl, her little sister is busy being quietly fabulous in the background.

My darling baby girl,

Today you are two. There are so many things I want to say to you. Things that for now you won't really understand. I'm writing them down anyway so that you will know when you are older that I never lost sight of you. Not once.

You see I hear it. I know that you are more often referred to in relation to your sister than as yourself. You are the nameless ‘sister of’ just as I am the nameless ‘parent/guardian of’. Today at the hospital someone referred to you as my ‘other one’ and I could have cried. You’re not my other one, my darling, you are my wonderful, hilarious, clever, special you.

Instinctively you have always understood. You have an amazing ability to silence when you know we need to deal urgently with a medical need. You know where to pass sick buckets from, you understand (and recently have been trying to help with) tube feeding. You come running if I’m ever out of the room and you think she needs me. You pick up toys she can’t reach and retrieve dummies or chewies. 

At the tender age of two you understand that you can’t just take things off your sister the way most little sisters try. You know she can’t fight you or chase you and you know that isn’t fair. Amongst your first words was the gentle ‘there there’ I’ve heard you comfort her with so many times.

You have spent endless hours in hospital waiting rooms and at her bedside when things have been tough. You have gone home with Daddy or I while the other sleeps at the hospital.

I see you battling with jealousy and confusion and I understand truly I do. It’s impossible to explain effectively to you, at 2 years old, why when you throw food at the table it’s naughty but when she throws food it’s because her brain will not cooperate with her muscles.

That occasion when I turned my back and you hit her (not hard or with any venom) you had confessed before I even turned around and without me saying a single word you took yourself off and sat on the step and you cried. I cried too. I cried for you, for the magnitude of being the responsible baby sister, the big girl, the carer.

I forget, my baby, that you are so young. The kindness and patience you demonstrate far exceed that which could be expected of one so young. It’s a lot to take on being part of our team but you do it so beautifully.

I know that you love your sister, you tell me, you tell her. You often cry when we drop her at school because you miss her during the day. But today is about you and I want to promise you something, sincerely.

I promise that you will never come second in our house. You might feel like you do, you might see the time and energy it takes from us being your sisters parents but know that we are yours too.

It’s okay for you to need things, to need us, We’re here, we’re listening, always. I promise you that I will do everything within my power to ensure you don’t miss out on things or feel inhibited doing things she will never do. You never have to apologise for being yourself or achieving things or wanting attention. I want for you never to feel the weight of the responsibility you carry. Your Dad and I will carry your share.

We didn’t conceive you to be anything other than you. Just you. Not a carer, not an assistant, not your sisters voice or her hands or her legs. Just you.

Your big sister will always love you unconditionally, you are her hero, her friend, her partner in crime. You can just be her little sister and I will just be mum, and dad will just be dad and we will just be us.

I love you and am already more proud of you than you will ever know.

All my love

Mummy

First Day of School

Today is a big deal. Today is Mojo's first day of school.

It's not so much the practicalities of her being away from me because she has attended the pre-school full time since last Christmas. In Mojo's eyes she is just going back to school with a new classroom and a new teacher.

I know different though. I know because I remember the meetings in early 2012 when I held her smiling and tiny in my arms while doctors talked about just 'going away and enjoying her while we have her'. I remember telling the mums in the parenting class I attended (to make up for the fact that it was 'unnecessary to do NCT', we wouldn't be taking a baby home) that it was unlikely that I would ever have to think about schools for Mojo because she was not expected to live that long. Retrospectively ladies, I really should apologise, that was painfully blunt and unnecessary, especially to say to other new mums, but I was at the stage where I was saying things like that out loud to remind myself not to get carried away!

So here she is polished and ready for her first day of school. The calendar is something we occasionally use at home to explain a busy day or make sure she doesn't get confused. Used in a photo like this I thought it looked a little bit like we were holding her hostage and providing proof of life.

Then I figured that's exactly what this is. It's proof of life, and a beautiful one it is too.

Independance Days

Currently in my (not enormous) kitchen I have five modes of child transport.

FIVE

In fact of you count the old one hidden in a cupboard you could make that six.

There is so little floor space that making a brew or reaching the bin involves a crystal maze-esque feat of physical agility. Still I can't bring myself to care that much because the latest two additions which have pushed us from buggy park status to full on Mothercare showroom have brought with them so much joy that fretting about floor space seems ungrateful.

I've talked before about Mojo's impending adventures with independence and over the glorious long sunny(ish) days of summer many of those dreams have come to fruition.

First came the Bugzi.

Watch me go...

My husband equated it to watching Mojo take her first steps. It was the first time she has ever been able to hold her head up and purposefully cross a space under her own steam. The Bugzi is a charity-provided electronic chair operated by switches (forward/left/right) it is truly remarkable.

Once she had worked out that she was in control, the first thing she did was head over to a table of things she wasn't allowed to touch! Its a weird parental juxtaposition to be so wholeheartedly cheering mischievous behaviour. Meanwhile back at home our house isn't really equipped to allow her to use it BUT once it gets in the school corridors....well, that mischief will certainly abound.

 Then, only a week later a very exciting delivery arrived at our door.

It was the streamers that pushed me over the edge. Often with adaptive equipment it's ugly, big, inelegant and functional. Aesthetics are obviously not a major concern when designing for NHS equipment. Mojo's new trike, however, is nothing short of beautiful. It is brightly coloured (in her choice of pink) it features a picture of a kitten. It has a little bell. The silver and pink streamers, some with 3D stars on, are attached to the bike by multi coloured butterfly badges. A bag at the back, which holds all the tools and straps, proudly displays her name on a registration plate. It's just, just perfect. It makes my heart sing that she can go out to do something she loves on her very own bike which is just as beautiful, if not MORE beautiful, than the bikes she has admired for so long. All of this AND she is essentially doing an hour of intensive physio without even realising it.

The last of our vehicular discoveries is, thankfully, not housed in my kitchen. This one was discovered by the beach in Mawgan Porth a beautiful Cornish beach resort which has been the destination of our family holiday every year since my mum retired and took us all to Cornwall to celebrate, we loved it so much that we all go back each year to spend time together. Its my happy place. Getting Mojo onto the beach has always been a faff and the older (heavier) she gets the more difficult it is becoming. It's not just her we need to get onto the beach it's also something for her to sit in that can hold her upright (folding beach chairs are useless) so we find ourselves with an enormous amount of kit for even a short beach play. Imagine then our joy, when sitting outside the surf shop was a beach wheelchair available to borrow for an optional small donation. My ingenious husband realised that the heavy floor sitter we usually wrestle to the beach fitted perfectly on the wheelchair and before I knew it, we had what can only be described as a beach throne and Mojo drifted across the beach waving at the crowds and laughing until she got hiccups. SO brilliant.

The importance of achieving more independence for Mojo cannot be overstated. Ever since we were able to look past the life-limited label and allow ourselves to embrace at least the idea of a longer future, our aim has been to ensure that Mojo is equipped to get the most out of life. Not for our sake but for herself, to dream big, to aim high, to ignore 'expectations' and roll her own path. Every inch closer to the goal of independence in whatever form it will eventually take, is a cause for celebration.

So now as we find ourselves days away from the start of Reception we know that she is completely ready for whatever that will bring!

Yes I Can

Today is the 2nd August. The 5th anniversary of the day our lives were forever changed by Mojo's diagnosis.

I started to write a post that was a letter to myself five years ago. What would I want her to know?

I couldn't find the right words, I was going in circles. Part of me wanted to say 'everything will be okay' but that isn't true and certainly wasn't true then. I wanted to tell her all the things her baby is going to achieve but I was worried she wouldn't appreciate them without the strive to get there. I was worried she would only see the implications of what she can't do. I found myself wanting to protect 4 year old Mojo from 5 years ago me's judgement. Let's be honest I over-thought it. Massively.

So I abandoned it and instead offer this Olympic themed story for this year's Diagnosis Day.

When the Olympics were in London 4 years ago Mojo was only tiny and we took her out to see the

London 2012

torch parade and had her photo taken with a Paralympic torch in Sainsburys (as you do). I found the Paralympics fantastically inspiring. The Channel 4 coverage led with the slogan 'Meet the Superhumans' and even though we were only just beginning to learn what Mojo was capable of it stuck with me, she was a little superhuman in training.

When the advert for the Rio Paralympics was launched recently with the soundtrack 'Yes I Can' it felt amazingly appropriate for the next stage of her development. I just love it. I love the music, I love the strength of the imagery. For Mojo, and other children like her who are just starting to explore the world for themselves I love the message this gives them about limitations and achievements. (Link to see 'Yes I Can' trailer). We met our little superhuman four years ago and in a world where she was told she couldn't before she had even taken her first breath she resolutely and loudly proved 'Yes I can'.

At the end of the school term Mojo took part in Olympics week. Each child was given a bespoke Olympic challenge to complete as part of the event. When the sponsorship form arrived home in her bag I was a bit taken aback. I will 'roll for 5 meters on my own' it said. This time last year that would have been an impossible dream. Only a few months ago she hated lying on her stomach and was unable to roll from back to front independently. The effort, determination and bloody mindedness that has brought her to being able to attempt a challenge like that is completely beyond me. My amazing superhuman. My girl. It might seem like a very mundane achievement but it is truly a remarkable feat of endurance.

On sports day we watched as she wholeheartedly competed in team games with her schoolmates. The concentration as she knocked down skittles, carried buckets and threw balls was breathtakingly beautiful. Those few hours watching the children competing, achieving and enjoying every moment were amongst the most life-affirming I've had. Children I've only ever seen in their wheelchairs making spectacular, emotive, efforts to take part in their walking frames. The atmosphere of support, encouragement and unadulterated pride was palpable. My very favourite photo of that day is of Mojo taking part in a skittle relay, her teacher is pushing her chair and she is reaching out for a skittle to knock down. She is in focus and the background is slightly blurred but what you can pick out are the arms in the air and the open mouthed encouragement coming from each of the spectators, some friends, most strangers, all shouting her name, all willing her on. Lump in throat time.

It might not be the real Paralympics but it might as well have been for the joy I felt.

On the last day of term I collected Mojo and she was holding a certificate, a special recognition award for her consistent achievement in communication and physical development this year.

'That's lovely sweetheart' I said

'We only give out a few of these you know' the headteacher said.

I think she thought I was being dismissive, when in truth I was trying to hold it together. I did so until the drive home when I sobbed with such happiness and pride and love for my remarkable daughter.

5 years ago today they said she can't, she won't.

'Yes I can'

August 2011

August 2016

The Hunger Game

One very normal Tuesday evening.

Two adults and two children sat round a table and had dinner. They all ate, they all laughed, they all talked about their day.

Not exactly ground-breaking family activity, right? But it was for us.

There is something emotive about food. Nourishing your family. The association between food and love.

Before Mojo had her g-tube fitted 18 months ago, feeding her dominated my every waking thought. It consumed me (if you'll excuse the pun). The hours I spent syringe feeding milk, 5mls at a time, to try and reach the magic 600ml volume prescribed by her endocrinologist. It was torture for us both. At that time she was eating some solid food too, only tiny amounts and it required full supervision, with very specific environmental criteria. On the days when I got half of a baby portion into her I celebrated a victory.

You would think then that the decision to have her feeding tube fitted would be a no-brainer. Why would we not want to make life easier for us both. The answer was, like everything, a bit more complex. It felt like admitting defeat, like I was letting her down. It felt like a step towards a more dependant lifestyle. I felt guilty for having a permanent hole put into my baby girl's perfect tummy. It felt like another step away from a 'normal' life (as though spending 6 hours a day trying to feed her was normal!). I told myself it would be there for fluid balance emergencies only and it would not change how hard we worked to help her enjoy food. I told myself that one day she might be able to have it removed.

So we went ahead.

The first time I fed her while she slept I'm pretty sure I heard the Hallelujah Chorus. To say that it changed our lives is an understatement. Overnight we went from battling to get 500ml into her, to being able to give her 750ml and a fixed volume of nutritionally complete liquid food. The sense of relief was tangible for months and even now I never tire of being able to 'top her up' when she is poorly. For the first time in her life she put on weight consistently and her sodium level, a problem since birth, fell into the normal range taking her officially out of immediate danger from it.

This isn't to say that the feeding tube came without its challenges. Vomitting was the biggest of these. Oh god the vomiting. It was epic. At times it felt like trying to fill up a bucket with holes in. We were having to put 1800ml into her (over 24 hours!) just to retain 800ml. That's a litre of sick a day, Nice eh!

So distracted was I with cleaning up sick and tending to repeated site infections, I barely noticed that within a few weeks Mojo had stopped eating completely. It made her sick so she just stopped. We were so desperate to get the vomit under control that we temporarily allowed her to refuse solids thinking it might allow her stomach time to adjust. In doing so we allowed her to realise that eating was something she didn't HAVE to do anymore.

It took a whole year, a range of investigations and various medications for the vomiting to stabilise.

Never say no to Ice Cream

Since then getting Mojo to take up recreational eating has been an uphill struggle and one we have taken very gently. We have consistently offered her snacks, meals and drinks and she has on the whole (with the exception of ice cream) refused all of them. We pay for 'taster' school meals so that she sits at the table with her friends and goes through the motions of sharing a meal. I've counted nine occasions over this school year that her home/school book says that she has tried her food.

Most of those nine have been in the past couple of weeks. Something has changed and suddenly Mojo is interested in food again. Not just eating the occasional mouthful absent mindedly, but actively eating multiple mouthfuls.  More significantly she has asked for food. She has communicated with noises, actions and using her communication book, that she wants food and then she has eaten what I have offered her.

Almost two years has passed since she was last eating regularly and in that time her physical development has come on hugely. This means that performing the action of moving a spoon from bowl to mouth can be done independently and while for every three spoons only about half a spoon reaches her mouth it is SO worth it to watch her successfully self feed. Independence; the holy grail.

For me, the most emotionally significant was that ordinary Tuesday evening when, after school we sat down as a family and had dinner together. It wasn't a pretence, it wasn't for effect to make us feel like we were eating together, it was real. A real family dinner.

It couldn't be replicated on Wednesday (or Thursday, or Friday) but it didn't matter because we now know that it's possible. For Mojo and for us as a team, the hunger is back and we are going to work very hard to satisfy it.