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 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.

Ten Thoughts on Six Monthly Reports

Tilly’s report from her development paediatrician (who is excellent and says it how she sees it, I like her a lot) came today. It’s always a joy. Here are the ten things I think when I read her six monthly report:
1. Ah fuck. Not again. How is this my life? How is this her life?
2. Nope, they still have no idea what’s wrong with her. I knew this, why does it still shock me?
3. I wonder if anyone will ever know. I wonder if I’ll marry the doctor who works it out. I bet I’ll either cry or snog them.
4. The word ‘severe’ sucks. At least I can send this to DWP to prove she’s disabled enough for them. Silver lining I suppose.
5. 🖕🏻 to the stupid buggers that told me I was neurotic and my child was not disabled. I hope they step on plugs every day for the rest of time.
6. More swear words.
7. The current state of disabled services is shite.
8. Incoherent swearing about the lack of disabled services and the increasing pressures on NHS staff.
9. I really like gin. I should keep it in the house. I’ll hide in the loo and eat a magnum instead.
10. I really love my Tilly. You can list all the problems in the world, she will always be the best girl on the planet.

 

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