Dear neighbour

Dear Neighbour,

How are you? I hope you’re having a good day. Me? I’m tired. Tired of squeezing a 25kg wheelchair into a car boot through a six-inch space. Tired of soaking the backs of my legs against the front bumper of your wet and dirty car. Tired of trying to squeeze a big car into a tight space when I’m in a hurry to get inside and do physio, medications, feeds and nappy changes. Tired of having to leave three children under seven on their own in the house while I inch my car forward just so I can get something out of the boot. I don’t understand why you would park up so close behind anyone that they couldn’t open their boot – but the Motability car of a disabled child who uses a wheelchair?

I was so excited the day we picked it up. We’d struggled on until Benjamin was three and we could join the Motability Scheme. Commuting to the hospital 30 miles away by train, running around trying to get a Car Club car when he was suddenly taken ill at school. I couldn’t believe it when the council arrived to paint our disabled bay the very day the car arrived! It was like a good omen – how often does that kind of thing happen? The car has made our lives so much easier, and safer. But they could be easier still if you were a little less petty and proprietary.

 

I guess you didn’t see the sticker…

You must have been feeling generous today…

You really couldn’t find an alternative space?

Our car is nearly 5 m long – we need a big car to fit in our family and the wheelchair and all the medical equipment, feeds, plastics and pads. Our disabled bay is 6 m long. If you take up a few precious inches of it, it doesn’t leave much manoeuvring space, does it? I’m not the best at parking – if I didn’t need to use this space I would go up the road or round the block to a larger one, to save myself the daily stress. But I do need this space, so I can’t.

What do I need to do? I’ve tried joking with you. I’ve tried knocking on your door and asking you politely. I’ve tried pointing out the sticker in the window that says ‘Please leave space for my wheelchair.’ I’ve tried parking at the front of my space (you encroach further), at the back of my space (you park as close as you possibly can). Hell, you’ve even had two parking tickets!

I know I am the underdog here. You are a patron of the arts, supporter of local causes, general town VIP. I am a nobody, an incomer to the town, a young (okay maybe not so young) mother, a benefit-claimant. But does your status entitle you to make our lives harder? Does it give you the right to ignore the Highway Code? (Section 2 part 239 says: …do not stop too close to a vehicle displaying a Blue Badge: remember, the occupant may need more room to get in or out.)

We absolutely love where we live, and we are blessed to have friendly, kind, thoughtful neighbours – most of whom I now call friends. But I’m starting to dread going out of the front door and all the stresses it now entails. All I need is to be able to park my one car in the disabled bay designated for it, and open all the doors, so that I can get my child and his equipment safely from house to car and back again. You have three cars; a healthy daughter; two functional legs. Would it really hurt to walk an extra 15 yards to your car? Sometimes you even park right up to ours when there’s a space directly in front of your own house anyway!

I’m sure your life isn’t easy either. I try to live by the adage that everyone is fighting a battle I know nothing about. I just don’t understand why you persist in making our lives more difficult and dangerous. We’ve come so far in this country in terms of access and inclusion, laws and recommendations. But attitudes like yours are still a stumbling block. Please, cut us a break and give us some space.

I wish I didn’t have to rely on a car, but it’s not easy to use public transport with Benjamin – so our car really is our freedom

With thanks,

Benjamin’s mum

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More than carers

Last week we said goodbye to someone we will all – Benjamin especially – miss like crazy. But it didn’t start out that way.

I’m a proud person – I don’t like asking for help (my husband will tell you that’s an understatement).

I’m a private person – I don’t like having other people in my house. Especially not when I’m in my oldest pyjamas, haven’t cleaned my teeth, and last night’s empty wine bottles are still sitting on the counter.

I’m a helicopter mum – I don’t trust anyone else near my kids.

And I’m a perfectionist – I like everything done ‘just so’ (the aforementioned husband has long since given up loading the dishwasher).

So the thought of having strangers coming into our house first thing in the morning and last thing in the evening wasn’t comfortable. At all. But these people aren’t strangers any more.

I’m not talking about our professionals, wonderful though they are – the physios, the OTs, the community nurses, the visiting teachers, who pop in for an hour once a fortnight, into the pre-tidied sitting room, do their particular specialist task with Benjamin, write up their notes and get back to the office.

I’m talking about the agency and the private carers, who get up at stupid o’clock to cycle through the pouring rain while I’m still sleeping; who change dirty pads and sometimes dirty bedlinen, and wash bottoms, and brush hair, and dress Benjamin’s stiff little arms and legs; who take the trouble and the time to learn tube-feeding, and chest physio even though we are their only client that needs it; who bring birthday presents that cost more than they get paid to be here; who wash things up when I’m not looking and help the girls on with their coats when we’re getting late for school; who text me when Benji’s in hospital because they really care how he is; who raise money for us in their spare time; who become friends that I care about, and helpers that I could not be without.

Love my birthday elephant (at least I think it’s an elephant? It’s got tusks. And stripy legs. Could it be a raccoon? But that nose… an aadvark?). Anyway, I love it.

There’s Cameron, just eighteen years old and the best-dressed young man I have ever met, who arrives on the dot at 7.15 to make sure Benjamin is turned out equally perfectly each morning, turns a blind eye to the girls hurling cereal around the kitchen, and keeps me up to date with the East Lothian gossip.

Thank goodness Cameron did my hair this morning

There’s Amanda, who whispers sweet nothings to Benji as she takes off her own shoes and socks and rolls up her trousers to shower him. He literally purrs as she washes his hair; you can see his whole body relax in her presence. She’s the kindest and most selfless person I know, and I can’t believe we are lucky enough to have her in our lives.

There are others too, Christine, who always made Benji’s bed up neater than in a hotel before she could leave, and Julie, who cycled through rain, wind and snow to get to us and still always asked how I was each morning, and Susan, who would do the ironing if she had any of her hour left over.

And then there’s Tracy, who we sadly said goodbye to after being with us from day one; who was way more competent than me at every aspect of Benji’s care from washing and dressing to feeding and medications. She drove all the way from the Borders to put Benji to bed while we bickered over our spaghetti bolognaise. Every time the doorbell rings, Caitlin jumps up hopefully shouting “It’s TRACY!” She will be sadly missed and I hope we keep in touch.

Did you say Tracy was coming?!

I have no idea why these people do what they do. They work unsociable hours, deal with all manner of bodily fluids (at least in this house), are generally ignored while the rest of us rush around getting our own selves ready for the day or eating our dinner, and are paid peanuts (if they are paid at all: if we cancel with even a few moments notice, even if they are already on their way to our house, for instance if Benjamin goes into hospital suddenly, the agency carers are paid nothing).

Swallowing my pride and baring our struggles to a social worker to get our eight hours care a week was one of the best things I ever did for our family. We have all got completely used to having people in the house (perhaps too used to it; I gave Amanda a bit of a shock by stripping down to my underwear to put my clothes in the washing machine the other day), that without them the evenings seem quiet, and the mornings, well the mornings are just chaos. Having people help with Benjamin at the critically busy times of day allows all our children to get the care and attention they deserve. It means we sometimes even get to school on time. It’s brought us new friends and a new perspective on our local community. And it’s a good incentive to buy some new pyjamas.

When life just carries on as normal

If you’re a parent, you’ll likely remember the feeling (how could you ever forget?) of emerging, blinking, into the light. Maybe from the hospital doorway; maybe your own front door. Maybe the very same day that precious bundle made its dramatic entry into the world; maybe one, two, or many, many days later. And… nobody notices. Everyone is rushing past on their way to work or wherever. Heads down. Headphones on. Grim faces. As they do every day. How can they? How can they just carry on as normal, as if nothing has happened. When the world is so changed? When for you, everything has changed.

If you’re not a parent, perhaps you felt it the morning after you first slept with the love of your life. Why can’t the world see I’m different? That nothing will ever be the same again.

The emotion is akin to that (and this is my poorest analogy, but I am an unashamed academic) I felt as a student when I’d been up all night writing the best essay of my life (only to have it shot down in a tutorial a few days later!). Tired but exhilarated. The world seems shifted: clearer, fresher, better resolved. In part delirium, in part clarity of thought, both probably born of exhaustion more than anything else.

It’s that feeling I get when I’ve been up all night saving a life.

His sats are dropping. I never believe the sats monitor but these are really dropping. He’s going blue. Literally choking on his own secretions. There’s no time to shout for help (and the last thing you want is to wake his sisters to see him like this; to see you, like this). There’s no time to call an ambulance, nothing like enough time. There’s no-one else. Just me, naked, a suction machine and a thin catheter. Catheter after catheter. Cursing the packets as I fumble them open. Cursing my shaking hands as I follow the tortuous path from his nose down towards his lungs. Holding my own breath until finally he can breathe again. Holding him close until his colour returns to normal. Kissing his forehead until, shivering with cold and fear, I creep back under the duvet, holding my sleeping husband for reassurance, holding the video-monitor next to my face.

I realise paramedics do this all the time. And nurses. Firefighters; lifeboatmen; midwives. I guess maybe they get used to it? Maybe it’s different when it’s your own child?

I am lucky. I have had to save his life maybe ten, maybe a dozen times only. Some mothers I know daren’t sleep unless there is an overnight carer with their child, maybe not even then. They lie with an oxygen bag and mask in their hands, ready to breathe for their child who may stop breathing several times a night.

And in the morning, I get up (or stay up). What else is there to do? There’s no time for self-indulgence, I’ve a family to run. Make a strong coffee, have a shower. Walk the girls to school. Hang out the washing. Busyness is good; I don’t want to sit and think.

I rarely tell anyone. “Did you sleep well dear?” “Not great…” How do you start a conversation with “I saved a life last night”?

And the feeling passes. Dwindles. Fades. Everything in my life returns to normal too. At least it has every time so far. Until the day I fail. One day I will fail and then nothing will ever be normal again.

End of an era

My eldest daughter, Jackie, nuzzled her way up and latched on to my breast whilst I was still in the recovery room after her caesarean birth over six years ago, and I’ve been physically nourishing my children ever since. In fact, I’ve been either pregnant or breastfeeding (or both) for longer than I was in High School. From the start of my first pregnancy, I was always keen to breastfeed if I could – I knew it was more convenient, cheaper, and healthier for myself and my babies; but I had no idea what a physical and emotional pathway it would take me on, or how long that journey would last.

First time for us both

Jackie weaned naturally from the breast when she was eighteen months old, and I was six months pregnant with her brother. Benjamin was a little harder to get started, but he fed slowly on drips of expressed colostrum from a syringe; then, thanks to the amazing guidance of the nursery nurses on the labour ward, graduated to both breast and bottle. He surpassed all expectations in his ability to feed and gain weight, and we left the labour ward five days after he was born. By the time his gastrostomy was eventually fitted, I was already pregnant with his baby sister.

Caitlin was a greedy little thing from the start. She fed for eight hours solid in the delivery room, while I was still attached to a syntocin drip and waiting for a bed in the labour ward. As a baby she would regularly drink more milk than her little stomach could handle – with inevitable consequences. By the time she started nursery at nearly a year old, she was able to go eight hours without milk, but morning, evening and night (and during the day on non-nursery days) she would still ask for ‘beebee,’ or just clamber up and pull down my top. She can feed lying, sitting, kneeling, standing up; whilst I am sleeping, cooking, tube-feeding Benjy, or reading a story to Jackie. It’s the easiest way to lull her to sleep, and the nicest way to comfort her when she is upset.

Caitlin is two and a half years old. I’ve breastfed her for more than the World Health Organisation’s recommended minimum time, and longer than 99.5% of UK mums. I’m starting to get tired of spending my evenings sitting in a darkened room feeding her to sleep, of not being available to my other children when they need me, of only wearing saggy old bras, stretchy tops and quick-access cardis. I know she doesn’t need the nourishment any more – she has a huge appetite for solids! Hopefully, she’s old enough to understand a little. She talks in long sentences, is ready to abandon her cot for a big girl bed, and almost ready to toilet train. So, after a few days of explaining, “Beebee’s going to run out soon. Beebee’s nearly empty,” our breastfeeding journey also has come to an end.

Caitlin has a huge appetite for solids…

We even let her eat spread straight out of the tub (third child syndrome)

To be honest, she’s taken it much better than I have. A couple of nights of cuddles with Daddy (I’m so lucky to have a hands-on, supportive partner) and Caitlin has gone to sleep with remarkably little distress. She still comes asking when she’s tired or upset, but after a quick reminder that, “Beebee’s all gone now,” she can easily be distracted with a toy or something yummier to eat.

To be honest, I was devastated. There were doubts. There were tears. I was terrified that my little girl would think I was rejecting her, would be utterly confused by the change, would hate me. I was worried about how I will now fulfil my role as a mother. I was lonely as I sat downstairs waiting for Daddy to finish putting her to bed. I was sad that one of the main things my body was built for, it will never need to do again.

My last baby

And the pain – oh my goodness – pain worse than when my milk came in as a new mum! I had hoped that Caitlin really wasn’t taking very much milk any more, and there wouldn’t be much of an adjustment to make. When my engorged breasts showed me how much milk I was making, I felt even more awful for taking it away from her.

Ten days on and we’re both doing better. My boobs are starting to settle down, even if I can’t lie on my front just yet. Caitlin will allow either me or Daddy to put her to sleep with very little fuss. She still comes into our bed for cuddles in the night, but it’s no more than cuddles (I’m still keeping my top on just in case!), and long may they continue. It still breaks my heart when she occasionally asks for milk, when she’s upset or just taken a tumble. It takes all my strength not to say “Oh go on then, what harm could it do?” But if Caitlin can be strong, then so must I.

I never tire of pictures of my sleeping babies

Maybe in the longer term this will actually enable me to be a better mother? I’ll be less stressed because I’ll have more time for work and play. I’ll feel less guilty because I can do my share of the chores in the evening instead of playing on my phone behind Caitlin’s back while my husband does the laundry and makes packed lunches for tomorrow. (Yes, I know breastfeeding is an important job too, but sometimes it’s been hard for me to feel that).

Maybe I can find time to get fit in the evenings. Maybe I can stop eating biscuits all the time (I’ll have to stop eating biscuits all the time now I’m not burning 500 calories a day making milk!). Maybe my husband and I can spend our evenings together sometimes. Maybe we can even leave the children with a sitter and have a night out. Maybe I can go out with my girlfriends, or to the committee meetings that always seem to be scheduled for feeding time. Maybe I can dawdle home from my pilates class instead of rushing to be back for the end of bath-time.

Maybe I can be more available for all my children. On the second night of our weaning experiment I was able to camp out in the garden with Jackie – just for fun! If Benjamin is awake in the night, from now on I’ll be able to go and lie with him for as long as he needs me, rather than just popping his projector lights on and leaving him to his own thoughts. With two adults now able to meet the needs of all three of our children, we have more flexibility. Maybe this is the right thing for all of us.

I’m so lucky to have had only good experiences with breastfeeding, to have been physically able to feed for so long, and to have been supported by my family and community to do so. I was never one to keep it under wraps – my children wanted to feed anywhere and everywhere, and wouldn’t tolerate being hidden away under a scarf or muslin. During my first few weeks I was sitting by the checkout in Sainsbury’s breastfeeding Jackie, and an older lady came up to me, not to complain, but to tell me how “lovely it was to see”. When in hospital with Benjamin, the nurses always let me bend the rules and bring Caitlin onto the ward too – they would even sneak me cups of tea and pieces of toast to keep me going. The only problems I’ve encountered have been my feeding children’s biting, tweaking, pulling, hitting, and twanging…

I’m proud of what my body has done over the last seven years, and immensely grateful that it was able to. I’m amazed at how my outlook has changed through being a first-time mother, then mother of a child with complex needs, then mum of three, and a breastfeeding mother to all of them.

Because it has been so easy, so comforting, and so special, breastfeeding has become part of my identity; almost a crutch. Pregnancy and breastfeeding made me feel like a real woman. Now, I have to find a new way to feel like that. Now, I have to mother my children by my words and actions alone. Now, I have to see if I really have what it takes, and that’s scary. With big changes coming up – Benjamin will be starting school, and I’ll be going back to work in a couple of weeks – I’m no longer quite sure what kind of mother I am or who I will become. I guess I’ll start by dawdling home from that pilates class and shopping for some lacy bras.

Brave, bruised, and better for it

With apologies for the spoiler, I can hardly believe it went without a hitch.

Back in the depths of winter, when Benjamin’s health appeared relatively stable, we rashly booked ourselves a summer holiday, more than two hours drive from our local hospital. Twelve hours drive and sixteen hours ferry away from our local hospital. Abroad! During May and June, as he deteriorated, it looked as if we would have to cut our losses and claim on the travel insurance. But, with almost three consecutive weeks of reasonable health under our belt, I nervously started to pack, whilst simultaneously trying to keep everything low-key and last-minute to avoid getting anyone’s hopes up.

Mostly, that is, the hopes of my six-year-old who’s learning French at school and was desperate to show it off: “I can do all the shopping, Mummy, you can just relax.” Because that’s all you do on holiday, right? Shopping and relaxing. My own hopes weren’t really that high to begin with, what with the twelve hours of driving, six of them on the wrong side of the road, the horrendous thought of a sixteen-hour crossing of the North Sea, the likely infestation of mosquitoes since we were camping right by a lake, the high chance of sunstroke, frostbite, drowning, or lightning strike, and the lack of an en suite toilet.

It’s hard work preparing and packing to take a family of five on holiday. By the time I’d arranged passports, warning triangle, vehicle clean-air certification, breathalysers, head-lamp stickers, GB sticker, maps, travel sickness pills, first aid kit, two weeks supplies of milk, containers, giving sets, bile bags, medications, nappies, wet wipes, incontinence pads, nebuliser, suction machine, feed pump, spare feed pump, sats machine, thermometer, electrical adaptors, clothes for everyone, toys for everyone, bedtime stories, surprise activities to keep everyone amused on the journey, snacks, directions to every hospital between here and Le Mans, a French translation of Benjamin’s medical notes, insect repellent, sun cream, blankets, waterproofs, swimwear, and cuddly toys, I was seriously wondering if it was really all worth it.

It was so worth it.

For me, there was a lot riding on this. Following three years of in-out hospital admissions, disrupting the lifestyle and opportunities of Benjamin’s sisters, this was my first chance to prove that we can give them a semblance of a normal life. To answer the detractors who said we should abort Benjamin for the sake of the rest of the family. And those who said we’d never make it work with three children. To show that we can all – including Benjamin – have fun times and a decent quality of life. To show that our little family works, plays, and stays together. I was determined to make it work.

My aspirations were given a massive boost by the wonderful staff of the P&O Hull-Zeebrugge overnight ferry. All we had to do was pop our hazard-lights on, and we were directed to a parking space right by the lift, and met by a lovely lady who took charge of Benjamin, leaving us enough hands to manage the girls and the luggage. The same lady seemed to be on hand throughout the entire voyage, always keeping a friendly eye out to make sure we were staying safe and having fun.

“Nice bed, Mummy, but where’s the boat?”

Our club-class cabin was amazing! A cold beer from the minibar helped my husband get over his initial panic that we had only three beds (I quickly pulled down the upper bunks that had been stowed against the wall, and the girls just as quickly clambered up and got into their pyjamas, so exciting was the prospect of a bunk at sea). Once we’d coaxed the girls back into their clothes we risked the terrifying prospect that is taking a wayward toddler out on deck, and watched the delights of Hull receding into the evening sun with a G&T before heading down for our all-you-can-eat buffet dinner (which in Jackie’s case consisted of rice, chips, naan bread, poppadum, a bread roll and a scoop of mashed potato – with ketchup, of course – just in case they don’t have carbs in France).

Benjamin enjoying the drive

First stop: Aldi!

A full days’ drive down the motorway later (with copious stops for coffee, picnics, toilet trips and ice cream) and we arrived at Lac de Sillé, a forest campsite that somehow managed to be both on top of a hill and next to a beautiful lake. With the occasional exception (like our tent being on a wooden platform up some wooden steps, making it somewhat difficult to wheel Benjamin into it), the campsite setup also made life very easy. There were real beds, decent toilets and showers, a fridge, a pastry delivery every morning, a pizza van every evening, draft beer, and plenty of fun atmosphere thanks to the World Cup!

Our home in the forest

Pizza. Nuff said

Allez les Bleus!

I’d love to say I’d planned it ‘just so,’ but it was pure luck that made it the perfect holiday for everyone. The site was so safe – and car-free – that the girls could have a real taste of freedom, pottering around the woods, building dens, playing tag in and out of the trees. Generally they played really nicely together, and even found novelty in helping with the washing up. They both got to stay up late enjoying the poolside World Cup parties, and as a consequence we mostly got a lie-in in the mornings.

Since we were in the right country at the right time, it would have been churlish to refuse my husband a day out at the Tour de France. And I got to visit local markets, photograph butterflies, and drink cheap wine to my heart’s content. Best of all, the lakeside ‘resort,’ about a mile’s walk away through the forest, had pedalos, ponies, pancakes, a little train and, for Benjy, a beach wheelchair! So many opportunities to spend ‘quality time’ with one another – in and out of the water. But most of the time, Jackie turned out to be right, was spent shopping. Particularly as the local supermarket contained possibly the most exciting invention of the century – an orange-squeezing, juice-making machine!

Of course there were moments of confusion – and not just involving the mythical motorway exit for the Le Mans by-pass. Caitlin had been so excited about going on a ferry – but once we were on board, the ferry was so big she couldn’t comprehend it and spent the entire journey asking plaintively “But where’s the boat?” There was the morning I got up last and emerged blearily to be informed excitedly, “We’re going to make bunting!” I somehow misheard. “You’re going to make pancakes?” Fortunately we had the ingredients for both bunting and pancakes. Win-win.

And of course it was hard to relax completely. What if Benjamin gets ill? Do we know how to call an ambulance, and how long would one take to come? Can we speak enough French to explain his condition and what he needs? What if some vital piece of equipment goes wrong, or we run out of milk or medications? It wasn’t until we were on the boat home that I really believed we might make it without a medical disaster.

And of course it was hard work. Constantly lifting a 25 kg boy and his 25 kg buggy in and out of the car, the tent, the back-breakingly low camp-bed, and the floor took its toll. Working through his morning and evening routines every day made me realise how much of the weight our wonderful carers take off back home. Remembering all his medications and equipment every time we went out, and working out how to use them away from our familiar set-up and in 30-degree heat, was mentally exhausting. It made me realise this is probably the last time we’ll be able to holiday like this – by next summer Benjamin will just be too heavy to manage without some concessions to accessibility. But, we are so lucky to have had such freedom for so long.

I was pushed way out of my comfort zone in many ways: keeping Benjamin safe in unfamiliar situations; speaking up to make my children’s needs understood – in French; driving a big car on the wrong side of the road; letting routines slip; letting things get dirty; using those hole-in-the-floor toilets! I learned that trying to economise on space by sharing a single tube of toothpaste is self-defeating. I learned that a car packed to the roof with milk and syringes on the way there = a car with plenty of space for nice French wine on the way home!

There was no infestation of mosquitoes. Nobody got (too) sunburnt, drowned, or was struck by lightning even in the dramatic thunderstorms we experienced for the first three days. It’s true there was no en suite toilet (at least, not until we got back on the ferry). But, we were blessed with totally awesome weather so we never had to traipse across the campsite in the rain. I know everywhere has had awesome weather this year, but still it felt like Someone was watching over us. When asked “Would you do it again then?” my answer has generally been, “Of course not, we’ve had all our luck now, something is bound to go wrong next time!” But maybe, maybe even if something does go wrong, I think we might just survive…

Graduation Day

Since when did nursery graduations become a thing? I’m sure I never had one, but last year my eldest daughter had two, complete with ribbon-tied certificates, gowns, mortar boards (long relegated to the bottom of the dressing-up box), and the obligatory cake.

Lovely as they were, I couldn’t help thinking this was all a little bit contrived. Yes, it was nice to mark the end of one stage of their life and the beginning of the next, but these smiling, bouncing, excited youngsters weren’t moving on through any merit other than having achieved a certain age. Yes, my daughter had done a lot, grown a lot, developed a lot, and learned a lot at both her nurseries, in no small part thanks to the wonderfully dedicated and inspired staff, but she hadn’t finished anything – she was only just beginning. We got some nice photos, ate the cake, and moved on.

With Benjamin, however, graduation seems utterly fitting. The two years he’s spent in the Green Room are laden with real achievements to celebrate: holding his head up; looking to both sides; expressing likes and dislikes; anticipating; recognising signs; choosing activities; making music; making friends. Tiny steps that accumulate slowly but surely. Graduation allows us to look back and see just how far he’s come.

Benjamin certainly perfected the art of sleeping through anything that doesn’t interest him

Unlike his neurotypical sister, Benjamin’s achievements haven’t all been fun. The children in the Green Room have worked hard: walking and talking don’t come easy to them. Smiling, turning their heads, focusing their eyes are real challenges to some of them. Benjamin is exhausted at the end of each and every day (if not by lunchtime). Graduation is a chance to show him how proud we are of the effort he’s put in.

With a fragile, life-limited child, we never know if the current school year might be his last. He can go downhill so quickly we don’t know if each day might be his last. Our opportunities to make special memories are finite. Graduation is a precious source of photos and thoughts to cherish.

Benjamin, like many children with additional needs, goes to nursery (and will go to school) on the other side of the county. So I don’t see his teachers every day; I send him off in a taxi with his clinical support worker, and get a written report back on his return. I don’t see him interacting with other students; I rarely meet the other parents of children in his class. Graduation and other formal events are vital opportunities to meet Benjamin’s classmates (including his adorable best friend), to crystallize friendships with other parents with whom we actually share a great deal, to see the environment in which our son is being nurtured, and to meet with the people who care for, teach, inspire and monitor my little boy’s progress.

And what incredible people they are! Graduation Day is an (inadequate) opportunity to thank them for all they have done for Benjamin and for us over the past two years. These are not just teachers. They are carers, nurses, and friends, to Benjamin and to me. Theirs is not just a job but truly a vocation; they couldn’t do it otherwise. I trust them with my precious boy and they repay that trust a thousand times. Teaching and caring for children like Benjy is physically, mentally, and emotionally exhausting; saying goodbye to them is a wrench. On Graduation Day, we were all smiling through tears.

Despite their totally hands-on job, Benjamin’s teachers had somehow had time to make him a certificate and a book of hilariously-annotated photos of his time at nursery. There were presents and a video slideshow. There was cake and much-needed coffee. Graduation Day was a chance to relax, in the busy and stressful world of special needs parenting, to share a cuppa and a laugh with people who ‘just get it.’

It’s not just Benjamin who’s grown during his two years in the Green Room. I too have learned a lot. I’ve learned who to trust, when to ask for help, how to let go (to some extent), and when and how to fight like only a mama bear can. Graduation was a chance to reflect on how far we’ve all come over the past couple of years.

For a boy whose prenatal prediction was ‘incompatible with life,’ Benjamin continues to exceed expectations and defy predictions. For a child who was unlikely to start nursery, let alone finish it, Benjamin has beaten the odds. He’s passed huge milestones and, with the help of the Green Room staff, made irreplaceable memories. He might not have worn a mortarboard, but he’s built a legion of admirers who would in any case just have taken it off to stroke his hair. He’s a worthy graduate of the Green Room. Bring on Primary 1 (and don’t worry ladies, we’ll be popping back to nursery for cuddles very soon).

Can I have a wee rest over the holidays please?

The cost of disability

The Kiddicare ‘Traffic’ Group 1-2-3

Above is a suitable car seat for most four-year-old children. It costs £29.99. Below is a suitable car seat for Benjamin. It costs £2,301.00.

The JCM ‘Carrot 3’

Panelled XL Bean Bag in Aqua, from http://www.BeanBagBazaar.co.uk

Above is a pretty fancy bean-bag. It costs £37.99. Below is Benjamin in his bean-bag. It cost £972.00.

Chillin’ in ma p-pod

The average cost of a new bathroom in the UK is £4,500, according to specialists Victoria Plum. Quotes for the downstairs wet-room we need to be able to shower Benjamin in safety (there isn’t even the option for a bath, much as he loves them) range from £9,350 to £14,760. A grant from the council will cover part of this, leaving us to shoulder approximately £8,000 of the cost.

A pack of vests for my youngest cost £3.50 for five; vests for Benjamin are £3.50 each, and these are the cheapest ones. I could go on (and on, and on, as I’m sure could most people with a disability). The charity Scope reported this year that on average, “disabled people face extra costs of £570 a month related to their impairment or condition,” even when their benefits such as Disability Living Allowance or Personal Independence Payment are taken into account. This is undoubtedly our experience. Because of Benjamin’s needs, we spend more than other families on heating our house, more on travel to and from hospital and appointments, more on insurance, more on clothing, more on laundry, etc., etc. Not to mention the fact that our income is lower than it might be because there is no way I will ever be able to work full-time since childcare for children like Benjamin outside of school hours is non-existent.

How are we supposed to meet these extra costs, none of which are met by the state? We were fortunate that the charity Newlife fundraised to cover Benjamin’s p-pod. Radio Forth’s ‘Cash for Kids’ are contributing a generous £3,000 towards his wet-room. The wonderful staff at Kindred have tirelessly applied for small grants to cover the extra travel and childcare costs we face whenever Benjamin is hospitalised.

But that’s it. So far I’ve drawn a blank trying to find a charity that will fund the car seat that Benjamin urgently and desperately needs – without it he simply can’t travel safely which means he won’t be able to get to important hospital and therapy appointments. There are no other charities that will cover the outstanding cost of house adaptations. The reason? The major sources of funding for disabled children, such as Family Fund and the Caudwell Trust set an earnings threshold which we fall just above. Although Benjamin fits the medical criteria, we will never be able to take one of Caudwell’s ‘Destination Dreams’ holidays to Florida, because we don’t fit the income criteria and there is no way we could afford, or have the time to organise, the immense practical and medical support needed to take Benjamin on a plane and far away from his local hospital.

One charity sent back my application for funding to help with Benjamin’s car seat, with pink highlighter over the expenses we declared that apparently indicate we are ineligible for help, including the cleaner that I pay for out of Benjamin’s DLA to allow me more time to look after him, and the amount I estimated I spend on presents (for when the girls go to other kids’ birthday parties, and end of term presents for the numerous staff that help all of our children in such wonderful ways). Benjamin’s sisters are stigmatised enough by association with their brother and miss out on many things because he is in hospital or has yet another appointment. The least I can do is try and ensure they attend their friends’ parties when they are able, and that they take a present with them like everybody else. This despite the fact that I accounted nothing for, say, extra expenses during hospital admissions, or holidays, as there were no boxes on the form for these. Clearly families with disabled children are not expected to enjoy such luxuries. Our girls have had nothing more than a long weekend away since Caitlin was born!

We are one of a large, hidden caste of families with disabled children who fall between two stools: we do manage to work and have an income that puts us just over the threshold for receipt of benefits including carer’s allowance and tax credits, and therefore face the enormous additional costs of disability practically unaided, on top of paying the usual bills such as a hefty mortgage and attempting to provide necessary items and the occasional treat for our children. I know we’re living beyond our means, even if I haven’t got time to sit and calculate our budget: the last time I worked through our income and expenses with our Kindred advocate, a couple of years ago, I was shocked to find we were running at a net deficit of roughly £400 a month.

Yes, we are fortunate enough to have some funds in a savings account in case of emergency. In case, say, Benjamin needs a power-chair that won’t fit down our hallway and we have to move out of our ‘forever’ house. In case, God forbid, he passes away meaning our Motability vehicle would be repossessed and we would suddenly need to buy a car. And of course we’ll happily use our savings for anything that Benjamin needs, because nobody else is going to help us with those kind of expenses. Money in the bank isn’t everything, won’t buy us happiness, and is no use when you’re gone. So unlike most middle-class families, building up their savings to put their children through university, ours will likely be whittled away well before they may choose to go there.

I know we are the fortunate ones. Every family has some kind of unexpected expenditure to deal with, whether that’s a disabled child, a sudden redundancy, a health crisis, or just a little girl who would give up everything to ride a horse. At least we do have some rainy day funds that will suffice for now. For now we can absorb the extra costs of disability without running into debt, relying on foodbanks, or disadvantaging our children’s prospects in today’s dog-eat-dog world.

And I hate doing it, but as well as eating into our savings I will continue to fight for state and charity funding, because that’s the kind of world we live in. That’s what the rich, the influential, the educated and the well-connected are doing. I will write eloquent letters, I will fight social media campaigns, I will go to the press, and I will cry down the phone if I have to (usually I can’t help it anyway). I will reapply again and again explaining our household budget in ever more demeaning detail and pleading for Benjamin to get the car seat that he needs before he no longer needs it.

I hate doing it because it makes me feel mercenary. Because it makes me go over and over our worst case scenarios when I want to hope for the future. Because it means I have to explain and justify our spending habits to strangers. Because it makes me feel guilty about taking limited resources away from those that don’t have the knowledge, education, time, health, resources and energy to fight for them.

I hate doing it because I don’t want Benjamin’s sisters to pick up on it. I want my girls to prioritise the values of happiness, kindness, fairness, gentleness and concern for others over money, and I don’t want them to see me doing any different, but I also want them to know I fought for them to have both. So while I will keep fighting I have to balance that with awareness-raising, fundraising, volunteering, trying to give back to others in as many ways as I can.

It’s draining, it’s demoralising, it’s exhausting. The financial costs of disability are enormous, but the cost is not just financial; disability (by which I mean social disability – being disabled by the world around us rather than by one’s own limitations) costs dear in terms of time, energy, sanity, stress and relationships. We are so fortunate that – at least until our savings run out – we can shoulder the financial burden and this gives us the breathing space to be resilient against the other pressures. Many are not so lucky.

How do I fight for all my children to have the best start in life, whilst at the same time teaching them values of gentleness and concern for others, without driving myself insane in the process?