Dear Health Care Professionals

I wrote this little letter a year ago and just found it again over on SWAN UK so thought I’d reshare:
Dear Health care professionals,
We have a few appointments coming up next month so I thought I’d write you an open letter.

Firstly, thank you. Thank you for saving my life when Tilly was born. Thank you for looking after my baby and working your hardest to give her the very best care. I know it’s not your fault that tight budgets mean I have had to fight every single step of the way. Thank you for doing your best despite working in such difficult times. I owe you a debt I will never be able to repay.

But please remember that when you are talking about your patient, commenting that she is fascinating, calling her a mysterious enigma and throwing out possible, soul destroying conditions you think she might have … she is my child. Not her symptoms and not the misfiring electrical impulses in her brain. She is Tilly. She is my child. She is the daughter I dreamt about my whole life, she is half of my heart and there aren’t any lengths I will not go to for her.


When you diagnose things or point out what is “wrong” you are talking about my child. Casually dropping potential conditions into conversation or talking about epilepsy so matter of factly … it hurts. Yes, she has epilepsy, yes she may have an excitingly mysterious syndrome … but you cannot begin to imagine how hard those things are to hear about or deal with as a parent. Not just in the present, but also all the ifs and buts of the future and all of the how and whys of the past.

Please, health care professionals, please remember that your patient is my child. My Tilly.


More than that. She is a person, her own person. With her own wants and needs. She loves Mr Tumble, listening to you sing and clap and sleeps stroking the ears of Ewan the sheep. She loves hands, sit and rub her hands and she will love you forever. She likes baths and swimming in the sea and being swung as high as possible on the swings at the park. She has the most infectious laugh in the world and wiggles her little bum and flaps her arms when she walks. She eats. BOY does she eat, it’s impressive how much such a small child can eat. She is a person. Not your 2pm appointment, not a statistic or a NHS number or a box to tick. A person, a beautiful, glorious, life changing wonderful person. She is Tilly, not just your patient.

No More Gingers

Growing up, the one thing I always wanted to be was a mum. I wanted four children, girl, boy, boy, girl. I’d drive a big people carrier or a minibus because we’d have two big dogs too. Life would be chaotic and loud and full to the brim with love. We’d go on adventures in the woods and on the beaches and we’d have a big tent with bedrooms. Much of this was modelled on my own childhood, I grew up next door to my best friend and her family, we were one big happy family and my fondest memories involve climbing up big hills and belly laughing lying down in tents blown almost horizontal in torrential rain. It was a great childhood. I wanted my own children to have the same noisy, lovely upbringing. 
But things don’t always end up as planned. I can’t have any more children. Two will be my lot. I had my last child aged just 24. It’s been something I’ve always struggled to come to terms with. 

Having four children four and under for the night/morning this weekend showed me just how chaotically lovely it is to have a house full of children. Having all those lovely little faces around my dining table for mealtimes was lovely. A good excuse for more sleepovers I reckon. 
I can’t have more children for a few reasons, mainly because I don’t know what is wrong with Tilly. She is undiagnosed and so I don’t know what her life will look like long term. I don’t know if her condition will cause her to regress again, I don’t know if it will kill her and I don’t know if it would be worse for a boy. I don’t know if I caused it, so I don’t know if I would pass the same condition onto future children.
 Tilly’s delays are difficulties are profound and challenging, I know I could not cope with another child with the same. 
I can’t have a baby because Tilly is so violent that it would not be safe. 
I can’t have a baby because I can’t stretch myself far enough. Tilly needs as much, if not more, care than a newborn and Arlo is a diva in his own right. I don’t think I could split myself into anymore parts. 
It’s a difficult one to think about. The thought of never feeling another baby rolling around inside of me and never breastfeeding again is hard. 
Bizarrely, I work with newborns and that doesn’t phase me in the slightest, it’s more watching the way sibling interact or how Arlo plays with other children that gets me. Tilly is trying her absolute best to be play and be gentle at the moment but there’s still a very long way to go. I wish Arlo would have the same as I had with my brother, a sidekick, sparring partner and confidante. 
So yes, unless Tilly’s condition is discovered and declared de novo (a genetic one off) and her care needs and violence dramatically decrease, there will be no more gingers. Unless I get a cat 🐱 

Hopefully we will have a childhood full of sleepover and friends instead ❤

Blackberry Picking and Nervous Shits – An Unexpected Tale. 

Hold tight. Here we go. 
I stupidly set myself a challenge this summer to be #brave 🙄 and carpe the diem! No more hiding in the safe confines of the house or the local park. The Unexpected family are on a stupid mission to break down the invisible barriers of single parenting a volatile SEN child and her arsehole brother. So we began. 
Today it has been chucking it down here in sunny Costa Del Gosport. Seeing as Tilly kindly broke the TiVo box and I “spring cleaned” (read as drank a glass of wine and threw out a lot of stuff) all the good DVDs… the paw patrol DVD on loop was wearing thin by the middle of the morning. I probably would’ve called it a PJ day but it’s likely I would’ve chucked the TV or a child out of the window if I had to ponder why there’s a town somewhere where they rely on a child and his puppies to save them from ridiculous events every day. Where are Ryder’s parents? Are they dead? Why hasn’t anyone commented on the mayor being unstable…? Is it all symbolic of the afterlife? Why is there only one girl pup? The questions go on and on and on. So PJ day was cancelled. Plus I had this stupid #brave challenge to do. Ugh. 
Much screaming, sweating, shouting and wrestling later, all three small gingers were loaded up into the car ready to take the pup for a walk. We got there, I managed to unload and rebuilt the massive buggy complete with stupid buggy board and massive raincover and loaded children onto it and off we went. Ten paces down the path into the woods I realised my first mistake. I was wearing sliders. Bloody sliders. In wet and windy woods. The kids were wrapped up in their coats and wellies and there I was, in just a dress and sliders, I had forgotten to pack myself anything practical. The ultimate symbol of motherhood that. We will pretend it was my self sacrifice and not my utter lack of preparation that caused this. 
For the next half an hour or so, all was well. Arlo enjoyed every puddle, Tilly enjoyed sitting in her chariot and the dog enjoyed his ball. Off we wandered into the woods and up the hill. Lovely. A few ankle deep puddles, but as it turned out, sliders are great for the woods, my feet were dry again in minutes. Score. 

It was on the way back that disaster struck. About five minutes from the car was a little bridge over a river/duck pond with a little island about four metres from the path. Determined to tire the dog out, I threw the ball into the pond for a few minutes whilst he dove in and brought it back. Then for some unknown reason, the stupid pea brain decided to get up onto the little island and then decided he was stuck. Here he is: 

Cue chaos. One dog woofing and crying. One Arlo attempting to drown himself in the pond and one Tilly joining in with the noise for good measure. A crowd formed, well meaning dog walkers offered suggestions on how to get the stupid dog to remember he could indeed swim and hop off the little island and come back. Oh no. The dog continued to cry and bark. And then it happened. Right in front of a whole crowd of people, my darling dog, the one I take loving pictures of and post all over instagram, projectile shat ALL OVER the little island. Ever seen the exorcist? Yeah. Like that. Mortified. “Bless him he must be nervous” one dog walker kindly remarked. Yeah, nervous I was going to drop kick him into the swans and let them eat him. 😑
 He continued his one dog drama show for another ten minutes, whilst I calculated whether or not I liked him enough to wade out and get the idiot ( I don’t, that was never happening) until finally another dog stole his ball and he jumped in like it was no bother at all. Little bastard. He trotted off up the path, oblivious to the thirty minute shit show hed just staged. Bastard. 
Things improved, I introduced Arlo to the art of blackberry picking “red ones make you poo, low ones taste like doggy wee” was our mantra and now I will be spending the next fortnight trying to get blackberry stains out of Tilly’s clothes 😣.

Still, week one of #brave challenge done and no one died so… job done ✅ 

5 Things I Really Need To Get Over (And Maybe You Do Too?)

So, I’ve been thinking a lot lately. College is over and I have a LOT more free time. I don’t do free time. I don’t like it. I obsess over things. You might have noticed I’m having a serious bout of writers block and spend a lot of time sulking that I don’t have anything interesting to say anymore. 
Time to calm my tits. 🍉 🍉. So here are ten things I really do need to consider chilling the f out about: 

1.

Comparing my children to others. This one I’ve mastered with Tilly. She is one of a kind and dances to her own beat. Arlo is a neurotypical (fancy word for does not have special educational needs) and I’m getting a bit too obsessed about what other children his age are upto. He never does as he’s told, screams blue murder when he doesn’t get his own way and is generally a bit of a tyrannical arsehole. Why is every other kid in the cafe sat eating nicely whilst mine puts on a tragic performance worthy of the West End about sodding chicken nuggets. I’ve simply decided to accept my child is an arsehole and will just eat his nuggets for him in future, ungrateful swine. 
2.
Every now and again I go through a real slump in my self image. My current hang ups are that I don’t like any of my clothes, my hair is boring, my make up skillz are sub par and I have no clue on accessorising. I’m feeling a bit frumpy and boring and really need to stop foaming at the mouth with jealousy at all the fabulous embroidered blouses and pompoms I’m seeing all over instagram. Time to get over it. I’m built like a Viking, if I wore an embroidered blouse, instagram models would glamp under me. 

3. 
Another whingefest of mine at the moment is that everyone else seems to have their shit together whilst I’m winging it precariously through life wondering when everyone is going to cotton onto me not being a proper grown up. I know full well that the rest of you are secret giant children too… but still I grump on. All of my friends are getting married and engaged and have lovely sofas… I can’t persuade my husband to divorce me and my sofa smells of dog and wee.
4.
Bloody instagram. It started as a joke, I wanted free clothes and to take wanky flat lay photos… now I’m obsessed with instagram mum bloggers and don’t understand why my instagram following is so small. Who doesn’t love looking at pictures of my stupid dog and my brunch? I really do need to get over my instagram hump. I bleat on all the time about how stupid it is to believe the instaperfect glow… but I really need a fancy wall to pose in front of and I really need free clothes from Zara. 
5. 
This is probably the biggest one. I need to get over my FOMO fear of missing out. I sit on my smelly dog and wee soaked sofa in my pyjamas and look through my Facebook and bloody instagram and see all these lovely weddings and dinners and parties. FOMO is in full force. The most stupid part of that is that I LOVE sitting on my smelly sofa in my pjs watching Netflix. 

So there you have it, five things I really do need to build a bridge and get over. Have a word. 🍉. 

I Dont Know How You Do It  …and Other Annoying Things to Say

I’ve had many many well meant but infuriating things said to me over the last almost five years. So here is my own personal list of things you should never say to the parents of a special child (or maybe just me because I’m a grumpy sod)
1) “I don’t know how you do it”
Over and over and over again. Enough. We do it because we love our children. It is what any parent would do. We do it because we HAVE to and no other bugger will. It’s not a path we chose, it’s the one we were given and it’s our normal. We do it because of love. I love my child, that’s how. 
2) “You’ve got your hands full!” 
Yep, yep I do. Two children, two hands. Stop saying it. I like to let go when people say this and shout “no look! Hands free! I can still Snapchat!”
3) “I’m sure she’ll catch up” 
No matter how well meaning you are, don’t say it. It takes a LOT of heartache to come to terms with the fact your child isn’t going to catch up. Comparing them to “typical” children the same age is a very painful experience. Alternatively, don’t ever put a limit on them. I heard of a doctor once telling a fellow SWAN parent that her son had boarded the train but would never get to the station. Awful. Our children will get to their own station and it will be a bloody marvellous station, bet the coffee there will be excellent. 
4) “Special parents for special children” 
I’ve already had my say on this one. This is NOT true. Special children make special parents. Not the other way round. 
5) “Well she looks normal”
Oh yeah? grab me an EEG machine and lets have a wee look inside her brain then eh. Stop it. 
6) “It’s such a shame”. 
I kid you not, I hear this a lot. No it’s not a shame. My child is joyfully happy, she doesn’t know any different and she brings so much to everyone she meets. Where’s the shame in that?
7) “Is it life limiting” 
Erm, no parent wants to discuss their child’s mortality. Go home and google it if you really have to know the answer to this one. 
8) “Will you have more children?” 
People ask me this for many reasons, one is so that I can have a daughter to look after Tilly when I’m older (sexist much) and secondly because, you know, there’s a big old risk I could potentially have more children the same. The short answer here is no. I will continue to search for an answer for Tilly’s sake and for my brothers sake so he can have a family of his own one day. But no, my womb is closed for business forever. 
9) “Did you do anything naughty when you were pregnant?” Usually said with a wink. 

Ah yes, ask an already guilt crippled mother if she could’ve done anything to have caused this. I cannot tell you how many hours I have agonised over whether or not I ate anything I shouldn’t have or how diligent I was with counting the kicks. Don’t even mention it. We carry enough guilt. Wink and see what happens 🙃
10) “Are you her carer?…but you’re so young?” 

This has been asked a few times, people assume that only older parents have disabled children. I was 22. This isn’t the case. Parents of special children come in all shapes and sizes. More on this point later. 
Here are some things you should say to parents of special children: 
1) I got you some gin (and tonic)

2) Costa? 

3) Yes, I will offer to babysit when she’s 25

4)Your eyebrows look excellent, have you lost weight?

5) Pub? 

6) You don’t look tired. You look radiant. 

7) Shall I walk your dog? 

8) And take your children whilst you nap?
😘

Broken Home

I had a conversation recently with a friend who is in a very unhappy relationship but won’t leave because they don’t want their child living in a broken home. 
Like mine. 
Obviously they didn’t say that bit but it made me feel pretty sad. See, my son has always lived in a ‘broken’ home, my husband left when I was pregnant and didn’t want to know until he was two and a half. My son has only ever known a one parent family and sees his other parent for a few hours every other weekend. But I don’t think that’s been a disadvantage for him. 
My son lives in a home full of love. There is no uncomfortable atmosphere, no raised voices, no arguments and no upset. He has never witnessed the blazing arguments I had with his dad before he was born. He knows only love and a tired faced mum who will hold his hand until he falls asleep and always come when he needs me. 
I would rather parent my children alone in my broken home forevermore than subject them to an unhappy and toxic environment. I would rather teach them to choose happiness. Not lie in the bed they made. You can always work on the bed you’ve got, buy a new mattress and some fancy pillows or you can realise it’s not the bed for you and buy a whole new bed. (Yes I am tired and want my bed).
I know that friend doesn’t read my blog, but if they did. I’ll say what I said to their face. If it can’t be fixed, be brave and be amicable. Your child will be happier with two happy homes than in one miserable one. 
There is no shame in being a single parent. You tried. It didn’t work. Single parents are kick ass. 
❤. 

Dear New Teacher, please don’t break my child.

Dear New Teacher,

In three short weeks my firstborn will be starting school, it only feels like yesterday that she was a tiny baby with a fuzzy peachy head, skinny chicken legs and big blue eyes. She will always be my baby. Here she is at a day old.


Tilly has been at nursery for three years now and almost full time for eighteen months, I know she will adapt to five days a week well and enjoy her new school. I can already tell she likes you and that you like her from her visits and that brings me so much comfort.

But please, please never put a lid on my child. She can’t talk, but she will. She can’t do most things your average toddler can do, but she will. If you believe in her. We were told Tilly probably wouldn’t walk. She’s retaught herself to walk multiple times now.  If you believe it, she can do it.

Please be patient with her. It will take weeks, months, even years for her to learn basic things but she WILL if you keep going. Please don’t give up on her.

Please remember she is one of a kind, please don’t tell me you’ve met loads of children like her. You haven’t. They are all different and my one is especially rare. No diagnosis means no limits. She is an individual.


And most of all, I hope you fall in love with her like everyone else has done. She has a lot to teach you if you let her. Not only will she teach you the absolute limits of your patience, she will teach you how important the little things are, how important it is to never give up and that you should never underestimate the power of a small ginger girl on a mission. She will change your life if you let her.

Please don’t break her.

Dear Prime Minister… An Open Letter. 

Dear Prime Minister,
I was challenged to write you a letter so here goes. 

Almost five years ago, I gave birth to a beautiful little girl called Tilly. Tilly, as it turns out, was not your average baby. Tilly is disabled. Oh yes prime minister, it’s a letter about people with disabilities. Good grief. 
From very early on, I have faced endless battles to get my child the care and support she needs. Every. Single. Referral (That I had to beg and cry for) was a flat no. They couldn’t help. Another time. Every. Single. Time. I’ve had to beg and cry and persist, calling over and over and over again until I could get a referral to physiotherapy, occupational therapy, wheelchair services etc etc. The list goes on. All services she needs. All services that had to say no first of all. 
Did they want to say no? Of course not, the NHS professionals are an incredible bunch of people. They work so hard to give what they can to the patients they support despite being massively over stretched and massively underfunded. Strong and stable my arse. Did you know that a few weeks after a weeks long stay in hospital, when she couldn’t sit, let alone walk, one service discharged her because her therapist was going on maternity leave and there was no one to cover for her. I could (and have done so) cry rivers for the incredible nurses, therapists and doctors who support my child despite the dire circumstances. 
Every single month I face lengthy battles to get hold of professionals, to pin down over worked doctors to come up with plans for my child’s epilepsy and future. Three times now, I’ve been told that I cannot have respite support for my disabled child as a single mother as  

“Any single mother would struggle with any two young children. “

I can guarantee you that what they really meant is: “you need to have a major breakdown or we cannot help you, we don’t have the funds to help you”. I am one of the lucky ones, my mental health has remained in tact, but I am not surprised so many in my position crumble. Its a tough gig, constant fight or flight mode. 

Do you know how hard that is? Do you know how hard it is to put on your battle armour and fight tooth and nail for the basics for your child when you’re dealing with the exhausting realities of raising a disabled child? It’s hard enough having to watch your child have a seizure, it’s even harder having to write in great detail about their epilepsy to prove they are epileptic enough for the DWP, more on that in a while. 

Now let’s talk about money. Cold, hard cash. It’s quite frankly an insult that carers receive £62.70 a week but only if they are caring for someone for more than 35 hours a week are you joking? That’s £1.71 an hour for 35 hours a week. It’s okay though, as we can earn a whopping £116 a week as well. That’s a cracking £178.70 a week. Good eh? Not only that, if you can’t work, cos you know… you’re spending 35+ hours a week caring for someone… they put you through humiliating appointments at the job centre where you are treated like a lazy lay about. 

“But don’t you want to work?”

I was once asked whilst sat there with my newborn curled up on my chest and my disabled toddler sat screaming next to me. Oh how I loved that one. I do work now as it turns out, I am worse off for it but at least I don’t have to sit through that anymore. 

Let’s not forget the three months I was left without thousands of pounds because HMRC decided to end my tax credits with a days notice and accused me and thousands of other single parents (ah yes, I’m one of those single mums, my husband left me whilst I was pregnant. Life choices hey) of being fraudulent. Three hellish months where I survived on the good faith of my family and friends. I saw others relying on food banks and suicidal because they couldn’t even feed their children. 
Next. DLA. Disability living allowance. That’s a good scheme. It’s helpful. If you can get it. Applying for DLA is vile. The whole process is vile. Every question must be answered in an exact way to tick the box… but the way is never revealed. You have to prove your child is disabled enough for them. You have to write in minute detail exactly how your child is not like others. It’s a very painful process, especially knowing that the person assessing it is desperately trying to trip you up. They have targets to beat after all. I have sobbed many tears over DLA forms and still have to fill in more. It’s soul destroying. 
Every single day, in almost every way, my disabled child’s life is affected by you and your government. My child and my family have to battle on because you don’t care about us. People with disabilities are not important to you. They aren’t seen as people and they don’t have a voice. 
Except they do. And we will never stop shouting. You learn to become a warrior when your child is disabled and that comes in very handy. 
People with disabilities deserve equality and their families and carers deserve support. 
We shouldn’t have to fight, scream and shout to get the basics for our children. 
We shouldn’t be made to feel like lay abouts, benefit cheats or fraudsters. 
We deserve support and respect. Support and respect we do NOT currently receive. 

I will never stop campaigning for equality, for fairness and for adequate support and provisions. Not now, not ever. 

Prime Minister. That’s all I have to say.

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Dirty Floor or Toilet? A decision I never thought I’d have to make. 

Today is changing places awareness day. 

Tilly is almost five now and doubly incontinent so is still in nappies. She is getting bigger and bigger and there is one thing that is really starting to become difficult out and about… nappy changes. 
When it’s time for a nappy change, I have two choices for my daughter, I either lie her on a dirty disabled toilet floor or I balance her across my lap whilst I’m sat on the toilet. Both options are disgusting and very undignified. I have been known to lie her down in the back of the car. She’s still small, this won’t be an option forever. 

“But there’s disabled toilets evvvverywhere!”

I hear you. But really disabled toilets only cater for those who are able to use a toilet or can empty a catheter. Without adjustable height full sized changing tables and hoists, the basic need to be clean cannot be unfulfilled. 
This is where changing place toilets come in. Changing places toilets cater for all/most disabilities and are essential for more than 250,000 people in this country. That’s more than a quarter of a million people who don’t have the option of using a bathroom outside of their home. 
How many changing places toilets are there in the U.K.? Less than 1000. Sounds like a lot? It’s not, there’s more toilets in Wembley Stadium (they have a changing place too) 
Changing places toilets don’t take up much room,  roughly the same size as a parking space. 
People with disabilities deserve equality in every area of their lives, let alone in the very basic need of somewhere to use the facilities.
You can learn more about changing places here: Little mama Murphy and here: Mum on a Mission

Back to Reality with a Bump

I’ve had a whole week off from parenting. The kids went to Devon and I spent five days in Cornwall with my college friends celebrating getting into university – have I mentioned that yet?  

Thrown back into the deep end this week with appointments every day. Arlo had his transition meeting at preschool and met his new keyperson, he had a whale of a time and will, no doubt, move over to the “big boy” side over the summer. One of his first key persons from when he started aged 10 months reminded me of how much baby Arlo enjoyed his farm animal sounds and would be heard mooing and baaing all day long 😂 
Next up we have Tilly’s final transition day at special school. I’ve been told that her new teachers are already smitten and very keen to learn about and understand her so I’m feeling less terrified than I was a few weeks ago. She will be in the smaller, higher needs class and will be trying without 1:1 care but we shall see how that goes 😬 

Then we have her home visit for school, here’s hoping that I can make it look like three terrors (inc dog)  and their equally terrorising mother don’t live there… they don’t need to know how unorganised the chaos is just yet…

And finally, a taster session at a centre for children with neurological disorders to see if they can help with some conductive education, either alongside school or with part time school if they feel that would work for her. 
And breathe.