A Final Thank you

It’s been three years since a tiny Tilly crawled through the doors of her nursery. She was 22 months old and was just starting to walk with the help of a lot of physio. I wasn’t ready to let her go, it had been gently suggested by the portage (play therapy) coordinator that it would do us both good. I had never wanted to send her to a nursery, she was going to go to the local preschool two minutes away, not five miles away. It was incredibly difficult to let her go, I felt I had failed as a mother, I wasn’t enough for her. I couldn’t give her enough to be at her best. I had a two month old at home and was a newly single mother, I felt like I had let her down entirely. Here she is at the age she went to nursery:
But from day one, the staff at her nursery made me realise something very important. I hadn’t let her down, not even a bit. I had given her the very best chance by putting her needs before my wants. She needed to go to a nursery who could give her intensive one on one interaction and intervention from day one. She needed to go to a nursery that nurtured her and supported me to be the very best mother I could be to her. Not only that, I needed to take some of the pressure off, let them do some of her daily therapies and let myself have time away from being her carer as well as her mum. 
Every single step of the way, from applying for DLA and fighting for referrals, EHCPs and equipment, they have been there to hold my hand. They’ve been an emotional crutch for me during the very hardest times. No one batted an eyelid when I brought Tilly back into nursery after a huge regression caused by a bug during the summer of 2015, they didn’t judge me for leaving my newly unable to walk three year old in their care for a few hours, I needed those few hours away from her to give myself space to sob and regroup, seeing her that way was devastating, They just focused on helping me to help her to walk again. This happened a few times. After her week long stay in hospital having constant seizures in January 2016, she was back to nursery shortly after. Again they helped her refind her strength. 

 When it became time to start her EHCP, they did it all, guided me through the bits I needed to do and listened to everything I wanted and needed for Tilly. It’s not often you’re listened to (really and truly listened to) as a SEND parent, I have been very spoilt with almost daily hand overs and chats about her progress and discussions on what we could all do to help Tilly are the norm. Nothing is ever too much. It will be a hard transition for me into school, but not for Tilly, I know she’s been given the very best handover possible. 
Child care practioners (is that the official term?) are such undervalued people, they love and nurture our babies into little people and that should be applauded and appreciated so much more than it is. 
I guess what I want to say is simply thank you
Thank you all for loving my children.
Thank you all for giving them your absolute best every single day. 
Thank you for listening to me when I needed to be listened to and for guiding me when I needed to be guided. 
Thank you for never giving up on Tilly. You have always believed she will achieve everything she wants to. Repeating the same tasks with her every single day for months and years to try and get them to go in… not even I can manage such dedication. 
Thank you for being my safe haven over the last three years. The three hardest years of my life. Where would I be without you?
Thank you all so very much. Don’t be surprised if I bolt out of the door on Friday after Tilly’s last ever day with you. I will be running off to sob in the car as I’m not a big fan of PDAs (thanks for making me cry so many times in TAC meetings 😂) Seems silly really as I’ll be back on Monday with Arlo…

But when you’re on a journey as unknown as ours with a child as rare as Tilly… finding a place that gets her, accepts her and truly loves her for who she is… well, it’s probably almost as rare as she is. 

I don’t feel ready for Tilly to start school next week but I know she’s going as the very best version of herself and with the bar set very high. If her new school come up short to the level of care she’s received at nursery, they’ll find me marching up there to raise hell. I know what we deserve now and anything less won’t be good enough. 

Thank you. ❤

Back Off Our Hospital 

I wasn’t shocked at all today to read that the hospital, Queen Alexandra in Portsmouth, where my children were born and where Tilly has been cared for many times over the last five years was slammed by the Care Quality Commission in their latest report. 
I wasn’t shocked at all… No.  I was furious. After all, this is the hospital that saved my life when I almost died during childbirth. This is the hospital that safely brought Arlo into the world. The place where Tilly was blue lighted at 3am after an hour long seizure. Where we’ve stayed many many nights. Where we go for a billion appointments a year. 


I was furious because I remember the midwife who promised me I’d be okay as I was wheeled to theatre after haemorrhaging and the obstetrician who saved me that day. I remember the paramedics who made it bearable to sit in an ambulance whilst being blue lighted at 3am thirty minutes away (they closed my local hospital) willing my child to stay conscious, the nurses who held my hand as I hopelessly watched my child locked into yet another seizure night after night. The same nurses who always find us a side room because Tilly can’t cope on a busy ward. Who make me toast after a long night and do whatever they can to make such a horrible experience that tiny bit more bearable. Not forgetting the doctors and support staff. 


I was furious because I watch the staff at our hospital working themselves into the ground, under staffed and over stretched but always giving us their best. I’ve never felt like anything was too much. They’ve always had time to reassure and double check. I watch them and I get so angry that they’re slated when they try so hard to make things better for us. 


So this is my little shout out to the wonderful staff at QA. Thank you for all that you do. Thank you for taking such wonderful care of my family and thank you for keeping on even in these difficult times. You make a huge difference to families like mine and you are so very appreciated. Thank you. A million times over. 

And a giant middle finger (just for good measure) to our government who have created such impossible working conditions for the amazing NHS staff. 

Separation Anxiety – How Exciting!

Weird thing to say hey ? Tilly is going through a separation anxiety phase and if I’m honest, I’m absolutely bloody thrilled about it. At four years and nine months old, my biggest baby has started howling if I leave her at bedtime and it’s a little bit brilliant… 


If you follow me on Facebook or instagram you’ll know we had a reallly magical moment last week when Tilly let me sleep next to her for the first time in four years. It was so wonderful that I cried. 
See, since about twelve months old, Tilly hasn’t given much of a shit about me. The baby that was strapped to my chest all day and slept in my arms all night all of a sudden didn’t want me anywhere near her. Ive had to practicality throw her and run away at bedtimes as she hated me being in the room with her. Every mothering instinct in my body wanted to sleep next to my baby and soothe her to sleep, but she didn’t want me anymore. This continued for the next four years. I cannot tell you how difficult it has been to settle her to sleep in hospital, I’ve had to hide in bathrooms and pray she’d go off many many times. Not being able to settle or soothe my child to sleep in unfamiliar and strange places was hard. Really hard. 

And yet here I am. Sat on the end of my almost five year olds bed watching her drift off to sleep. It’s taken me two weeks to realise it’s me she wants, quite possibly the last thing I’d ever think of. I darent leave the room as she will scream the house down if I do…. and you know what? It’s bloody magical. I’ve seen her fall asleep a handful of times in the last four years and all of those occasions were due to masses of epilepsy drugs, one general anaesthetic (hell) and one exhausting early morning curled up together in the resus room of the child’s Ward after a night of seizures. Never very happy times. 
This is different. This time she wants me here. She finally finds comfort from my presence and wants me to be in her space even if I do keep spoiling it by sobbing (happy tears) loudly. 
This summer with Tilly has been wonderful. After a springtime of non stop hospital stays, violence, EEGs, steroids and desperate phone calls to doctors who couldn’t help me… it’s simply magical to finally be what my child needs. I finally feel like she knows I’m her mama again. 




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 ❤

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.