I’ve been so tired that I’ve slept fully clothed many times. I’ve been so tired that I haven’t bothered to make myself dinner and just curled up instead. I’ve even been so tired I’ve almost gone to bed without taking my three year old up to bed too.
This is life with a child who does not sleep. I rely very heavily on caffeine.
A few months ago, I sat in front of Tilly’s neurologist and told him that my child was broken, she could not and would not sleep. She was surviving on a few hours of broken sleep a night. I was only half surviving by letting her sit and watch Mr Tumble half the night.
So he offered me melatonin. Melatonin is a hormone made in the pineal gland in the brain. Tilly does not make enough of this hormone so now I give her synthesised melatonin made in a laboratory. It puts her to sleep but doesn’t keep her asleep.
It’s been the best thing I could’ve done. Raising a disabled child and her brother whilst juggling university and work is hard enough as it is… at least now she can have a few more hours sleep and I can catch a few hours too before she starts waking again around 3am and I have to get into her bed.
It’s been in the news lately that my local county council are facing massive budget cuts and are failing SEN children. Was I shocked? Course not. Here’s a little list of some of the ways that budget cuts and “belt tightening” have personally affected my family so far in the last five years.
1) When I was in labour with Tilly, the unit was understaffed and so the midwife failed to spot that I was haemorrhaging heavily until my mum pointed out I was turning grey. I almost died in that labour room.
2) When Tilly was a few months old, my GP at the time told me she was “failing to thrive” but couldn’t refer me to anyone bar the growth paediatrician as the referrals would be rejected.
3) when Tilly was 10 months old my wonderful Health Visitor did her one year check early and sent off referrals to physio, development and speech therapy. All were rejected. Not enough funds.
4) When Tilly was 18 months old, those referrals that were resent countless times by my wonderful Health visitor were finally accepted. She couldn’t walk, feed herself or make many sounds by this point.
5) Those referrals didn’t turn out to be very helpful, the physio wasn’t enough, the speech therapy was pretty much nothing, only portage and her new developmental paediatrician seemed to be able to help. My parents fortunately paid for private physio and occupational therapy to finally get her on her feet.
6) When Tilly was struck down by a virus aged 2, she could no longer sit, crawl or walk. Budget cuts meant that rehabilitation physio was a piece of paper.
7) When she was hospitalised for a week suffering endless seizures, again she couldn’t walk. This time a charity stepped in and got her walking again.
8) It took eighteen long months to get Tilly the wheelchair she needed and when it came, it wasn’t really suitable. There was no raincover, it was impossible to push and very very heavy. Budget cuts meant I had to like it or lump it.
9) The local children’s centres were closed. We no longer had a safe haven to go. Isolation crept in.
10) Tilly was discharged from occupational health that she desperately needed because her therapist went on maternity and budget cuts meant she wasn’t replaced. Again, we had to go private. You don’t want to know how expensive that is.
11) The disability team at social services have turned us down multiple times for support and respite “any single mother would struggle with two young children” loosely translates to “we don’t have any money so until you put them at risk, soz”
12) Last year my child tax credits were stopped for months with no warning thanks to a spiteful company called Concentrix going after every single parent they could find. It was a very difficult few months and I am lucky enough to have my parents to help me feed the children. Others were being turned away from food banks and suicidal, feeling they had let their children down by being unable to feed them.
13) Every appointment, every referral, every service, every phone call is painful. You know that you’ll be waiting 6 months for a ten minute appointment, they are so understaffed. You know you’ll be told no over and over and over again.
So. Austerity Britain, how much worse does this have to get before something gives?
I’m asked frequently who exactly I’m finding answers about Tilly for. The answer to that is pretty complicated and I don’t always know. Tilly doesn’t know she’s different after all. It is notoriously difficult to get the support and services for an undiagnosed child. You ream off lists of symptoms and pray you’ll say the right one to tick the box for what you need. It took close to two years to get Tilly the basic level of physio, speech therapy and occupational she is entitled to. “I don’t know” is not the right answer when you’re asked what is wrong with your child.
So firstly but possibly not primarily, I look for the answer to benefit Tilly. I want her to have the right input and level and care that she needs for the rest of her life. I will never let them do anything invasive or unnecessary. She is a person first and foremost, not a research subject.
Secondly, I want to know for my own needs. I need to know for my own sanity. I need to know if it was my genes and my body that failed her. You’d think it didn’t matter, it’s not as if I can control what my genes do. But it does matter.
I am only 27 but I cannot and will not have more children because I don’t know if I will have another disabled child and I don’t know how severely this will affect my child over the course of time. We still don’t know if Tilly’s condition is degenerative or not. With an answer, I can undergo genetic counselling or prepare myself if I ever do want to have another child. I am too young to accept that I will not have more children. But I can’t without an answer.
Thirdly, I am a sister and a mother to another child. I search for an answer for my brother and my son. I want them and their future partners to be able to have children without worrying that they too could have a disabled child. Tilly is wonderful but I would not wish her difficulties on another child, epilepsy is a cruel condition and being unable to speak is very difficult. I owe it to my brother and my son to find all the answers that I can. Tilly’s DNA is with great ormond street now to determine if her epilepsy is genetic. I want them to be able to educate themselves and access all the support available to them when they are ready to have children.
Lastly I do it for families just like mine. The more DNA being tested, the more answers will come. Families like mine will not have live in limbo forever.
That said. I think a lot about what I’ll do if an answer never comes and that’s where Lady Gaga comes in:
“If I can’t find the cure,
I’ll fix you with my love”
I will continue to campaign and fight and advocate for my child and others like her to have everything they need. I will be her voice. I will make sure she has the very best and reaches her full potential. I will do this until the day I die. I’ll no doubt use my last breath to mutter something about equal rights 😅
I’ll do all of that because I love her unconditionally. And that counts for more than anything else.
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.
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.
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.
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.
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.
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”.
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?
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.