Girl Tribe Tales – Part Two. I wish I had a different Mum.

Today’s Girl Tribe Tale comes from an anonymous mama.

I wish I had a different mother…

Everybody always seems to be shocked when I say I don’t have a good relationship with my mother. Like its abnormal to not get on with the person who gave birth to you. To be honest I’ve never got on with her and that just makes the whole situation worse. I’ll start from the beginning.

So as a child I was the youngest of two, my older brother was always the ‘bad’ one so when it came to me I always had to go above and beyond to not be following in his footsteps. That always irritated me feeling like I had to be perfect constantly, no one is perfect especially not a child, if I even dreamt of doing something naughty I’d have the worst telling off while my brother would get a slap on the wrist. I still don’t understand why she’d have two kids if she treated them so differently. I’m sure the punishments would be illegal now and I would never dream of treating either of my kids like that!

My childhood home was a dingy 3 bed flat, I say dingy but I bet the people living there now probably love it. All I remember is mess, she never cleaned, she never even tidied just simple things like putting rubbish in the bin. Either us kids did it or it didn’t get done. She did however do one big clean in the living room once a year at Christmas when family came round but basically it was just piling the mess into our bedrooms until company had left then it was back to normal. There was no heating but I wasn’t allowed extra clothes or blankets so once winter arrived I could literally see my fingers turning blue. We were only allowed to bath once a week to save on the bills, I think thats why I bath and shower so much now just because I can.

It’s not like she didn’t have money, she had a good job she just spent all the money on herself instead of us kids, smoking, alcohol and food for her came before her kids. She used to blame my father. She still does. He left when I was only around 4 or 5, he found someone new. At the time I hated him, how could he leave me here with this? Why would my daddy want to leave me? Now I’m older and married myself I completely understand, she was just as bad at marriage as she was being a parent.

We didn’t see my father for a few years, we always asked for him and were told he didn’t want to see us. He’d moved on with his life and lived far away with his new girlfriend. It wasn’t until I was a bit older that I found out from a friends mother that he lived round the corner and was begging to see us. So thanks again to my mother I missed out on many years with my father. I do know courts were involved but I’ve never asked for details of what happened in court, I can only imagine what would’ve been said on her part. After finding out he lived so close I finally got to see him again and thats never stopped. I still see him all the time and I love his wife. Yes it was wrong to cheat on my mother with his now wife and I will never agree with how he left but I do understand that he deserved happiness.

Anyway, since my dad left we had a string of men appear in the house. I never liked them they always seemed really sleazy. I would stay in my room and avoid them, it was easy really as my mother had locks on the outside of our doors so if I wanted to be locked in I’d just be naughty when I knew they were arriving and I’d be locked in my room for the rest of the day, I also placed my drawers in front of the door so they couldn’t open it and come in. They never stuck around though, thankfully. Bar one he was with my mother for around 4 years I think from the ages of about 7 to 10. He was moved into our family home straight away. He had his own kids who they’re mother never liked him seeing and when he did he’d just be shoved in one of our rooms and left until his mother picked him up. I didn’t like the man or his kids. The man would just constantly shout and hit us, the only good trait he had was the house was spotless when he lived there, shame our bodies weren’t. We were constantly black and blue but obviously it was in places that wouldn’t be seen by anyone so he could get away with it.

I remember having a physical fight with his son, god knows what it was about but I floored him I was a 10 year old girl and I floored an 11 year old boy and god I was so proud. His dad was livid though so I was ready for the beating of my life but instead I thought fuck it I’m going to stand my ground, I’d floored an 11 year old I could take on the world right now! It was the first time I stood up to him, I shouted in his face that he didn’t scare me and he couldn’t touch me. I was so little but I felt about 7 foot tall at the time. He stopped and walked away I still don’t know to this day if I broke him but he moved out of ours not long later. I recently found out both him and his son are in jail for pouring an abusive substance over someone, I’m so glad I stood up to him that day. After that there was only one more man and then nothing since. I do feel sorry for her but I also think she brings it on herself.

In my high school years I was never at home, I made sure I was always at a mates or in some park drinking. She didn’t care. I used to go on little trips with my friends to meet lads we met online and if their parents found out it was hell on not for me though. As long as I was still doing well in school it didn’t matter where I was or what I was doing. Things started to slip at school in year 9 though. I gave up I couldn’t be bothered to be that perfect girl anymore, I was getting detentions and truanting. I left school with some GCSE’s but definitely not what I would’ve wanted looking back now. I went to college just so I could stay with my mates, we all did beauty therapy, although none of us are actually in the beauty trade right now. We all feel like our college life was pointless. I ended up quitting college when I was 18, partly because my boyfriend wanted me too, partly because I wanted to piss off my mother because she wouldn’t get money for me being in full time education anymore. I moved in with my boyfriend not long after meeting him on my 18th birthday. I was desperate to leave my family home, I would’ve loved to move to my fathers but he just didn’t have the space, I still wish now he could’ve moved to a bigger place and let me live there. How life would’ve been different.

Moving in with my boyfriend was a huge mistake. He was verbally and physically abusive. I stayed with him for 2 years though until he decided I wasn’t good enough anymore and he wanted someone younger. I remember being devastated, I loved him so much and he just threw me out like I was trash. Since then I stayed with friends and went off the rails drinking far too much and pulling anyone who came onto me on a night out. It only went on for a few months but it was a few months that I felt like I was in control of my whole life. I didn’t have my mother demanding I was perfect, I didn’t have a boyfriend demanding I gave him all my money while he hurt me. I was just having fun with my best friend.

Around 8 months after my boyfriend broke my heart I met someone who I actually genuinely liked and it seemed he liked me too. I still had my guards up and didn’t let him in but he kept pushing. We started dating and after a couple of months I brought him to meet my dad, he was the first boy I ever brought to meet my dad. Even though I had lived with my ex for 2 years he always refused to me meet my family, I think it was because he knew my dad would take me away from him. My dad and his wife loved him they got on so well and I think I knew from that point he was a keeper. My mother though didn’t. He was younger than me and my mother just kept saying I should get back with my ex he was older with a good job he was better for me. She knew everything that happened in that relationship and still told me to go back. See what I mean about being a terrible parent?

I stuck with the new man though and we ended up married with 2 kids and it’ll be 10 years together soon. We’ve had a lot thrown at us. A lot revolving my mother. She ruined my wedding day, she ruined my daughters christening, she’s ruined so many christmases for me that I no longer see her on Christmas I spend it with my father and his family.

My mother lived with my brother in the dingy flat until my brother got sick of her and moved far away with his girlfriend. So that left me being her only child near her. She’s got a disease so if she just keep up with her medication she can die so can’t really live on her own. Obviously I suggested sheltered accommodation but no all of sudden she had moved into my home. 7 years later she’s still here, if I bring up the option of sheltered accommodation or her moving out she plays the depression card and kicks off. She still refuses to clean and her room is disgusting. Both my kids are starting to wish she wasn’t here too. Yet she still walks around having digs at everyone. It’s so frustrating but I’m stuck. I don’t want to be here with her and my husband is a saint for staying being around all this. Most of the things we’ve been put through has been because of her. I’m sure she purposely wants my marriage to fail because she couldn’t keep a man.

So now at the age of almost 30, I still feel like she still has a hold over me. If I throw her out and something happens its my fault. I’ll be the bad person. Its getting to the point though that I can’t take this for much longer. Again my brother gets to have his life while I’m stuck unable to live like a proper married couple. Everyday it gets worse and everyday I’m thankful that I’ll never turn into a horrible mother like her. I wish she’d realised a lot earlier she shouldn’t of had kids.

Anyone who doesn’t have a great relationship with your mother don’t feel alone, you are not alone just like I’m not alone. Although it does feel that way an awful lot of the time.

And Breathe.

It’s been about a month now since Tilly was diagnosed with GAMT deficiency an incredibly rare metabolic disorder and I’m still no closer to putting into words how I feel about it.

I have spent the last few years holding my breath and waiting for the day I would watch the first love of my life turn into a shell. I was told she probably had a degenerative neurological condition like Rett syndrome. I spent years waiting for my worst nightmare to come true. The horror of waiting for my child to lose all of her hard earnt skills was similar to that feeling when you’re nauseous but can’t be sick. There’s no relief. It is a relentless and crushing feeling. I was holding my breath. Outwardly positive, inwardly waiting for the worst.

But that isn’t coming. Tilly doesn’t have a degenerative neurological disorder. They may even cure her epilepsy. My nightmares of losing her to a seizure may come to an end. I don’t need to tell you that the thought of losing my child makes my lungs burn and my throat close over.

How do you ever put into words how it feels to go from waiting for your child to lose everything to being told she will develop and the future should be bright.

It feels like I can breathe again. Like I can inhale and actually fill my lungs with the hope that the future for my best friend on the planet will be more than I could have ever hoped for her.

I have my sad moments. It’s incredibly tough to know that I could have saved her from all of this if it had been screened at birth. She didn’t have to be disabled, she didn’t have to be epileptic and she didn’t have to spend five years trapped in her own body. Treatment is too late now to save her completely. She will always have profound special needs. But she didn’t need to.

That hurts.

Tomorrow Tilly and I (and my mum) are off to London to meet her metabolic consultant and start treatment. I will be walking into that hospital with my lungs fit to burst with hope.

Hope for the girl I’ve been waiting to lose for such a very long time. The girl I get to keep. ❤️

1904 Days. D is for Diagnosis.

It took 1904 days for Tilly to be diagnosed with the rare metabolic disorder called GAMT deficiency. 1722 days of waiting from when I realised she wasn’t quite right at six ish months old.

Almost 2000 sleepless nights. Almost 2000 days wondering what the hell I did to cause this. Almost 2000 days of holding my breath. Waiting for them to tell me the neurologists were right and it was degenerative, that it would leave her quadriplegic and unable to do any of the things she loved. Waiting for them to tell me it would kill her. That I’d have to live my life without her one day. I can’t tell you about the nightmares I’ve had. The words won’t come. Just know that they were the type of nightmares that woke me in the middle of the night sobbing and struggling to breathe. All I ever wanted in life was a daughter, I couldn’t let myself think about losing her. My subconscious thought about it for me, I drowned in my dreams instead.

Drowning. Who knew you could feel like you were drowning whilst sat in a hospital room a few miles away from the sea. You can. You can sit there and feel the air leave your body as the professionals tell you that your child’s EEGs look bad, that the medications aren’t working, that things are getting worse. I have sat and silently drowned more times than I let myself recall. The pain is unbearable, the searing heat that rips down the back of your throat whilst you try to sit there and look composed and nod in all the right places…

Two weeks ago I had a call from Tilly’s geneticist. They had found a diagnosis. GAMT deficiency. She wasn’t going to regress, she wasn’t going to live in her wheelchair, she wasn’t going to die.

Because there is treatment for her condition.

My girl may well be able to talk, run, sing, jump, shout and do all the things she wants to do.

Again, I can’t describe how I feel about that. The joy is so pure and so unbelievably amazing that there aren’t the words. Never in my wildest dreams did I ever think she could be treated. Never.

Never did I dare to believe I could go on to have more children. But I can now if I want to.

It took me approximately 48 hours to realise the full extent of Tilly’s diagnosis. I was and am so happy about treatment options that I glossed straight over one glaring fact.

If it had been diagnosed at birth, she would have been saved from all this.

Treatment from birth has led to children being either unaffected or only mildly mentally “impaired”.

The sheer fucking unfairness that my child didn’t have to be like this. That she could’ve been the girl she was meant to be. That hurts. That hurts like a knife to the stomach. One blood test at a few days old and I could have saved her from all of this. She didn’t have to be locked into the prison that is her mind for all these years. She could’ve been free.

Dwelling on that will kill me. So my focus is on gearing up ready to start her on treatment and look forward to all the improvements she will hopefully make on it. She will never be “cured”. She will never not have severe learning difficulties but she will achieve everything she wants to. I feel unbelievably lucky that my child’s diagnosis has given her a very exciting, new future. I know full well that 99.99% of the time, this isn’t the case. In the back of my mind I am thinking of the parents who didn’t get this news. Who were told their worst nightmares were coming to life. I only wish I could share this with them. No parent deserves to go through that.

I have always said my girl would rule the world and she will, in her own wonderful way.

Bring on the future.

The Girl with No Friends

There’s a lot of things you take for granted when you have a child. That they’ll talk, walk, dress themselves etc. One thing I took for granted is that my children would have friends. I met my oldest friends aged two and they’re still stuck with me now after all.

But when you have a child with SEN, it’s not that easy.

One of the hardest things I’ve ever had to read about Tilly was a report about 18 months ago that stated that other children were scared of her. 100% true and 100% justified but utterly soul destroying. Tilly always wanted to have friends but she couldn’t behave appropriately around other children, her love for them involved ripped out chunks of their hair, skin and faces. It was pretty horrendous. There was a lot of blood. No exaggeration.

Last summer after eighteen months of various epilepsy medications with hideous side effects that caused her to be incredibly violent and volatile I decided enough was enough. She wasn’t happy. I took her off the massive doses of drugs she was on.

Best decision I ever made. The difference was almost immediate. Her brother could be around her for the first time in his life. I could go to the toilet and not have to close her into her bedroom to keep him safe from her. They have Friday night sleepovers in her bedroom and curl up together. These are siblings I had to separate with a metal room divider at one point to stop her from tearing him apart.

Tilly started special school in September alongside some of her peers from Nursery. They remembered her and rightfully so they were scared. A few months Tilly was chosen by another boy in the class as his friend during a friendship activity. I cried when I found that one out.

Tilly’s behaviour around other children improves every day. Through the impressively hard work and determination of the staff at her school, she has been taught and has learnt how to behave appropriately around other children most of the time.

Today Tilly had her first ever play date with the other girl in her class. They went to Nursery together too and Tilly targeted her as she loves her and her hair is especially long and lovely to pull 😫. But not anymore. Both girls were happy to see eachother. They sat together with her younger sister in a restaurant and nothing was broken, no one was injured and the place didn’t burn to the ground.

My child finally has friends aged 5 and a bit.

And I have a friend who gets it. ❤️

How to raise a child with special needs as a single parent and juggle everything else.

So it’s no secret I have a lot going on. I’m a single parent, I have two small children and one happens to be disabled. On top of this I’m a student Midwife, a peer supporter and all round busy bee. It’s a juggling act but I manage. I was asked how I do it all…

This isn’t an easy question to answer. I’m not sure I can really do it justice as I don’t entirely know. But here goes:

  • Always say yes. If someone offers you help, say yes. Don’t be a martyr.
  • Prioritise and don’t waste energy. You don’t have to do it all. Find ways to make your life easier. Get a dishwasher, hire a cleaner, get your Mum to do your ironing 😜.
  • Accept how you’re feeling is okay. It’s okay to think it’s really unfair. It’s okay to feel really sad, admitting that to yourself and accepting that it’s okay to feel the way you do is half the battle.
  • Learn to fight. You won’t get anywhere until you learn when to stand up and fight for what your child needs. Never let them fob you off and never back down.
  • Have PJ days. You don’t have to be out and about all of the time. It’s okay to stay home and chill out. Kids need down time too so don’t feel guilty if you’re all still in your pjs way past lunch.
  • Don’t do it on your own. Find your tribe. Tilly has a team of around 50 people who support me to raise her. Family, friends, teachers, support staff, nurses and paediatricians.
  • Celebrate every little thing. We have a roast or sit and watch a film cuddled up eating snacks every time something positive happens. Life is for celebrating after all.
  • On a similar note always plan something to look forward to. Even if it’s a quick coffee with your friend, life is more bearable if you know something fun is on the horizon.
  • Self care self care self care. Treat yourself. Do a face mask, have a bath, get your brows done, buy the shoes, go and walk the dog. Do what makes you happy.
  • Try not to stress. Stress helps no one and it makes you ill. Write a list of what you need to do, tick it off and then go and have a lie down. It’s okay to delay filling in that form or making phone call that makes you want to cry for a few days.

But most of all, talk about it. Talk about how you’re feeling, talk to others in similar positions, talk and laugh with your friends. Always talk.

I Drug My Child to Sleep – Confessions of a Tired Mum

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.

Thirteen Ways Goverment Budget Cuts Have Failed my Family (A Shortened Version)

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?

Lady Gaga – The Cure 

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. 

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.