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.
Social media has picked up massively in the last decade. You can message, tweet, snap, DM or scroll through your friends various forms of social media at any hour of the day. Friendship is always there, right in your pocket, ready to talk to you.
When I fell pregnant with Tilly back in 2012 I was massively lonely. My friends were still at universities all over the country and I was the only pregnant one. I was desperately lonely and had no idea about pregnancy or babies. I remember googling “how to make friends when you have a baby” in those first few months and eventually I struck gold and found the Bounty forum for those due in October 2012. I had to send a friend request on Facebook and then I’d be added to a secret group. It was very exciting.
That group became my lifeline. I was obsessed. I would ask questions all day, every day and pour every last part of my thoughts into this group of 300ish women. I wasn’t alone anymore. I had found somewhere to belong. The group had its difficulties with a few less than delightful women who were needlessly unkind or seeming to try and scam others. After a year or so things settled down and now, five years later, the ladies in my first due in group are some of my closest friends in the world. I’ve been to weddings and hen dos in Warwickshire, Brighton and The New Forest, various birthday parties and meet ups as far as Cardiff, Manchester and London. I am also in a group from when I was pregnant with Arlo and have lifelong friends from there too.
I have cried rivers of tears for babies lost by women I have never met and I have confided my darkest fears to women I have never met. I’ve even been to the funeral of a woman I have never met. I drove for seven hours to be there and it never even crossed my mind that I hadn’t met her. She was my friend and the grief and loss I felt and still feel was very real. Someone I spoke to most days… of course she was my friend.
So imagine my horror when I was told that my online friends were not real. They felt and looked pretty real to me.
I’ve made a lot of my “IRL” friends online. Only today I went for lunch with a friend I met after she messaged my blog page 😍. I’ve even been a bridesmaid after befriending another friend on instagram 😂. I’m secretly very shy so getting to know people online first helps me to be less of a socially awkward lemon 🍋
So! I asked The Girl Tribe, the Mama Unexpected group (yes you can join Click here ) about online friendships and their feelings on them so here’s a few things I’ve learnt.
As a whole, online friendships are a positive. Most said they tell their online friends things they wouldn’t discuss with their other friends.
Deepest darkest secrets are told to the people in my pocket… I love you all!
Others told me that (like me) online friends made them feel less lonely:
Online friends have been a comfort blanket for me at times when the world has felt incredibly lonely.
And many told me that they felt that their online friends had supported them through difficult times and even went so far as to say that their online friends had saved their lives.
There were a few darker stories, it’s easy to be a bully via a keyboard after all and kind gestures sometimes back fire. I would advise always being cautious.
The main thing I learnt from asking about online friendships was this: Online Friends ARE Real friends.
I wouldn’t be the mother I am today if it wasn’t for the “people in my pocket”
Thank you ❤
(strong girls club tee is from the epic Muthahood)
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.
So, I’ve been thinking a lot lately. College is over and I have a LOT more free time. I don’t do free time. I don’t like it. I obsess over things. You might have noticed I’m having a serious bout of writers block and spend a lot of time sulking that I don’t have anything interesting to say anymore.
Time to calm my tits. 🍉 🍉. So here are ten things I really do need to consider chilling the f out about:
Comparing my children to others. This one I’ve mastered with Tilly. She is one of a kind and dances to her own beat. Arlo is a neurotypical (fancy word for does not have special educational needs) and I’m getting a bit too obsessed about what other children his age are upto. He never does as he’s told, screams blue murder when he doesn’t get his own way and is generally a bit of a tyrannical arsehole. Why is every other kid in the cafe sat eating nicely whilst mine puts on a tragic performance worthy of the West End about sodding chicken nuggets. I’ve simply decided to accept my child is an arsehole and will just eat his nuggets for him in future, ungrateful swine.
Every now and again I go through a real slump in my self image. My current hang ups are that I don’t like any of my clothes, my hair is boring, my make up skillz are sub par and I have no clue on accessorising. I’m feeling a bit frumpy and boring and really need to stop foaming at the mouth with jealousy at all the fabulous embroidered blouses and pompoms I’m seeing all over instagram. Time to get over it. I’m built like a Viking, if I wore an embroidered blouse, instagram models would glamp under me.
Another whingefest of mine at the moment is that everyone else seems to have their shit together whilst I’m winging it precariously through life wondering when everyone is going to cotton onto me not being a proper grown up. I know full well that the rest of you are secret giant children too… but still I grump on. All of my friends are getting married and engaged and have lovely sofas… I can’t persuade my husband to divorce me and my sofa smells of dog and wee.
4. Bloody instagram. It started as a joke, I wanted free clothes and to take wanky flat lay photos… now I’m obsessed with instagram mum bloggers and don’t understand why my instagram following is so small. Who doesn’t love looking at pictures of my stupid dog and my brunch? I really do need to get over my instagram hump. I bleat on all the time about how stupid it is to believe the instaperfect glow… but I really need a fancy wall to pose in front of and I really need free clothes from Zara.
This is probably the biggest one. I need to get over my FOMO fear of missing out. I sit on my smelly dog and wee soaked sofa in my pyjamas and look through my Facebook and bloody instagram and see all these lovely weddings and dinners and parties. FOMO is in full force. The most stupid part of that is that I LOVE sitting on my smelly sofa in my pjs watching Netflix.
So there you have it, five things I really do need to build a bridge and get over. Have a word. 🍉.
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’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.
So, it’s about time I finally got myself a little website after a glorious year of blogging over on Facebook Ta dah! . It’s been an epic year, I’ve been invited to all sorts of fabulous events, reviewed some wonderful books and most excitingly, I was nominated for an award! I spent an evening in Coventry drinking more booze than strictly needed surrounded by amazing bloggers from the SEND community, more about them later.
Time to tell you a bit about me and why I chose the name Mama Unexpected. So here goes.
Hello! I am Hana aka Mama Unexpected. I have been writing this little blog for over a year now and what a year it has been. A year ago I was pretty lonely and convinced that no one would ever connect to my life as it was so far removed from the norm. I resisted writing a blog for a very long time because I didn’t think anyone would get me. I was so very wrong. I am blown away daily by the solidarity and compassion shown to us.
A little about me and my family. I’m 27 and live in South Hampshire with my two children Tilly (4) and Arlo (3) plus Bodhi the dog. My main hobby is drinking gin with or without tonic but I don’t get much time for that as I’m a fairly busy woman! Since September I have just finished a year at college studying health sciences and in two months time I will be starting my midwifery degree. Alongside this, I work for a wonderful charity providing breastfeeding peer support and coordinating the local project, raise two small people by myself and organise big ol’ charity fun days. So not much.
To explain the blogs name… I shall rewind back to this time five years ago. I had dropped out of university a year before, I was a shell of a person after wasting my teenage years with a violent psychopath of a “man” and had found myself pregnant after three whirlwind months with my future husband. I was 21, all my friends were in their final months of their degrees and I was adamant that my life was going to be bloody perfect too. The next two and a half years were a blur of babies, weddings and a house move.
Fast forward to May 2014, eight months after the wedding and I found myself a heavily pregnant single mother with an 18 month old at home. It came as a huge shock to almost everyone. I was living the instaperfect dream after all. I had it all. Except I didn’t, I had been trapped in a very unhappy marriage and was miserable. But that didn’t scare me anywhere near as much as being a single parent of two. I felt trapped. I was stuck at home with a baby and another one due imminently whilst my husband waltzed off into the sunset to live the bachelors dream and I was left to pick up the pieces. He visited periodically for a few hours for a few months but that soon stopped. He did eventually come back in September of last year and sees the children for a few hours every other weekend.
Tilly, my beautiful firstborn, progressed normally for the first few weeks and months of her life but then the milestones didn’t come. It was a slow and incredibly painful realisation that my perfect child was disabled. As yet, Tilly has no diagnosis. Whatever she has is so rare they don’t know what it is or why. She is severely globally delayed, non-verbal, autistic (allegedly), has hypermobility, low muscle tone and epilepsy. These labels however, do not define her. Tilly is the sort of child that is impossible not to love, even with her fingers gouging out your eyes and ripping out your hair, she is still incredibly loveable. She is completely in tune with the emotions of others and fiercely loyal. If she picks you as her friend, you’re her buddy for life. Tilly is also incredibly determined, despite her epilepsy wiping her brain constantly, she battles on and has relearnt to walk many times. She blows our minds every day and is my greatest inspiration. She starts school in two months time and I am terrified.
Arlo, my tiny second born is your typical three year old. He has no special needs or delays and will talk your ear off given half the chance. He is the most loving and kind little boy there is and has a wicked, sassy sense of humour.
Did I ever expect my life to be like this? Did I think I’d be a single mother at 24 and a carer for my disabled child? No, of course not. My life is not what I expected in the slightest. It is so much more. Becoming a mother and facing all that we have faced together as a family has put me right on the path to being the person I want to be. Strangely, my husband leaving me was the best thing that has ever happened to me. I was free. I learnt to love myself finally after so many years thinking I wasn’t enough.
I believe strongly in being kind to others and to forever pay it forward and give as much as I possibly can to those who need it.
My life is definitely unexpected and at times utterly overwhelming but mainly, it is more than I could’ve ever hoped for.
Thank you for reading my blog, thank you for the last year and thank you for keeping me company.