Online Friends are NOT Real Friends.

Social media has picked up massively in the last decade. You can message, tweet, snap, DM or scroll through your friends various forms of social media at any hour of the day. Friendship is always there, right in your pocket, ready to talk to you. 
When I fell pregnant with Tilly back in 2012 I was massively lonely. My friends were still at universities all over the country and I was the only pregnant one. I was desperately lonely and had no idea about pregnancy or babies. I remember googling “how to make friends when you have a baby” in those first few months and eventually I struck gold and found the Bounty forum for those due in October 2012. I had to send a friend request on Facebook and then I’d be added to a secret group. It was very exciting. 
That group became my lifeline. I was obsessed. I would ask questions all day, every day and pour every last part of my thoughts into this group of 300ish women. I wasn’t alone anymore. I had found somewhere to belong. The group had its difficulties with a few less than delightful women who were needlessly unkind or seeming to try and scam others. After a year or so things settled down and now, five years later, the ladies in my first due in group are some of my closest friends in the world. I’ve been to weddings and hen dos in Warwickshire, Brighton and The New Forest, various birthday parties and meet ups as far as Cardiff, Manchester and London. I am also in a group from when I was pregnant with Arlo and have lifelong friends from there too. 

I have cried rivers of tears for babies lost by women I have never met and I have confided my darkest fears to women I have never met. I’ve even been to the funeral of a woman I have never met. I drove for seven hours to be there and it never even crossed my mind that I hadn’t met her. She was my friend and the grief and loss I felt and still feel was very real. Someone I spoke to most days… of course she was my friend. 
So imagine my horror when I was told that my online friends were not real. They felt and looked pretty real to me. 
I’ve made a lot of my “IRL” friends online. Only today I went for lunch with a friend I met after she messaged my blog page 😍. I’ve even been a bridesmaid after befriending another friend on instagram 😂. I’m secretly very shy so getting to know people online first helps me to be less of a socially awkward lemon 🍋 

So! I asked The Girl Tribe, the Mama Unexpected group (yes you can join Click here ) about online friendships and their feelings on them so here’s a few things I’ve learnt. 
As a whole, online friendships are a positive. Most said they tell their online friends things they wouldn’t discuss with their other friends. 

Deepest darkest secrets are told to the people in my pocket… I love you all! 

Others told me that (like me) online friends made them feel less lonely: 

Online friends have been a comfort blanket for me at times when the world has felt incredibly lonely. 

And many told me that they felt that their online friends had supported them through difficult times and even went so far as to say that their online friends had saved their lives. 
Amazing hey? 
There were a few darker stories, it’s easy to be a bully via a keyboard after all and kind gestures sometimes back fire. I would advise always being cautious. 
The main thing I learnt from asking about online friendships was this: 
Online Friends ARE Real friends. 


I wouldn’t be the mother I am today if it wasn’t for the “people in my pocket” 
Thank you ❤

(strong girls club tee is from the epic Muthahood)

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 ❤

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. 🍉. 

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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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. 

Goodbye Keppra 

Tilly was diagnosed with epilepsy back in January 2016 after a long weeks stay on the Starfish Ward at QA hospital in Portsmouth. After a disastrous trial of carbemazapine, when Tilly reacted terribly to a very low dose and could barely sit, let alone stand or walk, she was put onto a drug called Keppra. After ten months of very little change, she started to go downhill, her absences were longer and her behaviour got worse. She started on epilim alongside the keppra. 
It didn’t work. 
Things got worse. EEGs showed constant seizure activity and that at night, she was not asleep, she was seizing all night instead. I had always loved watching her sleep, it was a terrible blow to realise that she wasn’t safe and happy in her dreams like I had so hoped. Six weeks of steroids commenced.
They did not work. 
She was hungry and angry hangry all of the time and pretty unbearable to be around. So, she was started on clobazam, even more drugs poured into her tiny body.
They did not work. 
She was, to put it simply, high as a kite, and more spaced than ever. Another emergency appointment with her neurology team and I took her off of the clobazam immediately and we agreed to wean Tilly off of the keppra. 

The change has been incredible. Tilly has said her first sounds in context. Buh for bubbles. Buh for ball. Tilly is starting to understand what I’m saying to her. Mentioning the swings or icecream at bedtime last night caused happy squeaks and leg kicks. 

Today was Tilly’s first day keppra free for 19 months. The relief and the guilt is utterly intertwined. 
Relief that she’s come down from huge amounts of epilepsy meds to just one without having a massive seizure and hospital admittance. It is a fine line and I am terrified that I’ll push her over it. But the improvement to her quality of life and mood, for now, is worth the risk. I found her cackling her head off this afternoon after getting underneath her bed. I can tell you that she was NOT aware that there was a space under her bed before now. It’s quite exciting how much she’s noticing and delighting in. 

Guilt because I’ve been drugging my child up to the eyeballs for the last year and a half and as it turned out, they were making her much, much worse. 

There is no current future plan. Her team are at a loss and her appointment with the consultant at the next hospital isn’t until October now. I am going to ring her epilepsy nurse on Monday to discuss alternative therapies for her.
Epilepsy is an awful condition but I am determined to find the right balance for my girl. 

“Failing”

I’ve always been a big believer in the power of words. Today marks four years since I was told that my nine month old baby was “failing to thrive”.

Failing. 

I was failing her and so she wasn’t thriving. I went home and I sobbed. It had been nine months of weekly weigh ins, weekly “why don’t you give her a bottle?”, weekly insisting that there was something wrong with my baby, they were wrong, she wouldn’t catch up. My wonderful health visitor was the only professional person who took me seriously and did her one year check early to start referrals to the specialists. The GP was the one to tell me my child was failing to thrive and he referred her to the growth paediatrician. The only referral that was successful. Every other service came back and said no. They would not help yet. My wonderful health visitor battled with them all until they accepted she needed their help.

Funnily enough, the growth paediatrician was the only positive aspect. She wasn’t failing, she was just small. But I sat in her office and begged her to check Tilly. My ‘failing’ baby had no reflexes and it was mentioned she may not walk. It was a very difficult time and another seven months before she saw any of the services she needed.
The word failure swam around in my mind for a long, long time. I took it personally. I had failed her. I was her main caregiver so it was my fault somehow. Maybe I didn’t interact with her enough? She was sick almost constantly so would stay upright and strapped to my chest to keep as much milk in as possible. Did I harm her by doing that? Should I have left her to scream in pain on the floor to work on her muscle tone?
Not only that, but they had described my baby as a failure. My perfect, wonderful baby. I was heartbroken.

Four years later, Tilly has profound learning difficulties, is officially classed as disabled and has uncontrolled epilepsy. Would I class her as failing to thrive?

Never. 

My girl is a warrior. She’s never failed at anything. She’s fought tooth and nail to be the very best she can be no matter what has been thrown at her. She has low muscle tone and very flexible joints yet has learnt to walk multiple times and gets stronger every day. She has epilepsy that charges through her brain constantly yet still pushes on to learn new skills.

Tell me exactly what part of that is failing to thrive?

I hope that one day doctors will stop using such a hurtful and unneeded term. Use the word delayed. Delayed gives hope. Not yet, but one day. Failure is a cruel word to describe anyone. Words are powerful, use them wisely.

My girl is NOT failing to thrive. My girl is incredible.

Unexpected?

So, it’s about time I finally got myself a little website after a glorious year of blogging over on Facebook Ta dah! . It’s been an epic year, I’ve been invited to all sorts of fabulous events, reviewed some wonderful books and most excitingly, I was nominated for an award! I spent an evening in Coventry drinking more booze than strictly needed surrounded by amazing bloggers from the SEND community, more about them later.

Time to tell you a bit about me and why I chose the name Mama Unexpected. So here goes.

Hello! I am Hana aka Mama Unexpected. I have been writing this little blog for over a year now and what a year it has been. A year ago I was pretty lonely and convinced that no one would ever connect to my life as it was so far removed from the norm. I resisted writing a blog for a very long time because I didn’t think anyone would get me. I was so very wrong. I am blown away daily by the solidarity and compassion shown to us. 18893346_382026098860463_599461903010157932_n

A little about me and my family. I’m 27 and live in South Hampshire with my two children Tilly (4) and Arlo (3) plus Bodhi the dog. My main hobby is drinking gin with or without tonic but I don’t get much time for that as I’m a fairly busy woman! Since September I have just finished a year at college studying health sciences and in two months time I will be starting my midwifery degree. Alongside this, I work for a wonderful charity providing breastfeeding peer support and coordinating the local project, raise two small people by myself and organise big ol’ charity fun days. So not much.

To explain the blogs name… I shall rewind back to this time five years ago. I had dropped out of university a year before, I was a shell of a person after wasting my teenage years with a violent psychopath of a “man” and had found myself pregnant after three whirlwind months with my future husband. I was 21, all my friends were in their final months of their degrees and I was adamant that my life was going to be bloody perfect too. The next two and a half years were a blur of babies, weddings and a house move.

Fast forward to May 2014, eight months after the wedding and I found myself a heavily pregnant single mother with an 18 month old at home. It came as a huge shock to almost everyone. I was living the instaperfect dream after all. I had it all. Except I didn’t, I had been trapped in a very unhappy marriage and was miserable. But that didn’t scare me anywhere near as much as being a single parent of two. I felt trapped. I was stuck at home with a baby and another one due imminently whilst my husband waltzed off into the sunset to live the bachelors dream and I was left to pick up the pieces. He visited periodically for a few hours for a few months but that soon stopped. He did eventually come back in September of last year and sees the children for a few hours every other weekend.

Tilly, my beautiful firstborn, progressed normally for the first few weeks and months of her life but then the milestones didn’t come. It was a slow and incredibly painful realisation that my perfect child was disabled. As yet, Tilly has no diagnosis. Whatever she has is so rare they don’t know what it is or why. She is severely globally delayed, non-verbal, autistic (allegedly), has hypermobility, low muscle tone and epilepsy. These labels however, do not define her. Tilly is the sort of child that is impossible not to love, even with her fingers gouging out your eyes and ripping out your hair, she is still incredibly loveable. She is completely in tune with the emotions of others and fiercely loyal. If she picks you as her friend, you’re her buddy for life. Tilly is also incredibly determined, despite her epilepsy wiping her brain constantly, she battles on and has relearnt to walk many times. She blows our minds every day and is my greatest inspiration. She starts school in two months time and I am terrified.

Arlo, my tiny second born is your typical three year old. He has no special needs or delays and will talk your ear off given half the chance. He is the most loving and kind little boy there is and has a wicked, sassy sense of humour.

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Here they are!

Did I ever expect my life to be like this? Did I think I’d be a single mother at 24 and a carer for my disabled child? No, of course not. My life is not what I expected in the slightest. It is so much more. Becoming a mother and facing all that we have faced together as a family has put me right on the path to being the person I want to be. Strangely, my husband leaving me was the best thing that has ever happened to me. I was free. I learnt to love myself finally after so many years thinking I wasn’t enough.

I believe strongly in being kind to others and to forever pay it forward and give as much as I possibly can to those who need it.

My life is definitely unexpected and at times utterly overwhelming but mainly, it is more than I could’ve ever hoped for.

Thank you for reading my blog, thank you for the last year and thank you for keeping me company.