Christmas Eve is here and my little angel is blissfully unaware of what all the fuss is about. Daisy doesn’t know its Christmas tomorrow……..or care! It’s just another day in her groundhog world. Another day of us winding her bloody Fimbles toy until our fingers are sore. Another day of enduring those fecking animals parading through a field on Teletubbies. Another day of feeding, changing, feeding, changing. Another day of just hoping our little cherub will remain in a good mood. Just another day.  But hey, where’s my Christmas spirit (gin my friend, you will be poured copiously as soon as I finish work)

This year I’ve decided to not let all those ‘making memories’ tales on social media piss me off as they regularly do, no, instead I’ll smile (through gritted teeth) at others perfect festivities. I have my own reason to smile and that’s down to something as simple as Daisy being happy (please, if there is a God, let it continue) and that’s all it takes, mind you, if Santa fancies indulging me with a Rolex this year, who am I to stop the Big Man! So, I’m putting a positive spin on this whole Christmas charade as I believe I’m the lucky one so I want to gloat. You see I don’t have the agonising pressures most parents have of getting my teenager the latest ‘fad’, the latest iPhone, the latest designer wear…….oh no, my little princess wants for nothing, and nothing is pretty much what she’s getting this year. So, what’s the latest must-have in our seventeen year old’s stocking I hear you say?, drum roll please ……….. a replacement copy (there’s only one page left in the original) of ‘My First 100 Animal Pictures’! (actually, I’ll have you know it took intensive internet searching to find!). Daisy will be absolutely delighted (I guess?), she will point and moo and meow and quack to her little hearts content and then once I’ve had enough of saying “oh yes, a cow” for the hundreth time, I will hide the bloody book, glug some gin and chuck her a copy of a shredded Argos catalogue to peruse. Simple pleasures……..deep sigh.

So yes, Christmas will come and go just like any other day in our household, the lights are twinkling outside, the candles are flickering inside and the world will think we are celebrating but all we are doing is going through the motions, tomorrow, the next day and the days after remain on repeat, however just for the festive period (okay I lie) I may indulge in an extra tipple to make it seem that little less mundane. Chin chin eveyone and a Merry Christmas to you all x

When I was growing up I swear dog poo was hard and white! Yep, you read correctly. Has she finally lost the plot I hear you say, well let me explain…….

Today, I took Daisy for a lovely walk in the sunshine. When I say walk, I walked but the lazy little madam refused so she was pushed in her wheelchair. We moo’d, quacked and barked at various animals (not necessarily the correct sound matching the correct animal, well you would be stretched to find a cow in Cardiff Bay). Daisy was quite content relaxing and taking in the fresh air until she decided all that sitting down and being pushed around was thirsty work! Gwar, Gwar, GGWWAARRRRR!! She just kept repeating her word for drink over and over again. I didn’t have many options, go back and pick up her cup from the car or go and buy a ‘baby’ cup from the closest supermarket, I chose the latter as it was the quicker choice. I picked up the pace and must have looked like one of those super fit parents that runs with a jogging buggy, however I am neither fit, was jogging or am a super parent, I just wanted to shut her up. Nearing the supermarket Daisy was getting more and more frustrated by her life threatening thirst and started swiping and grabbing anyone who came close, I had to get her a drink soon Daisy DOES NOT DO WAITING!

So, we get to the shop. The choice of cups isn’t great but I just buy the best of a bad lot and then buy some flavored water. I decide on using the self serve but as I reach for my purse I notice that Daisy has a piece of green plastic in her mouth. What on earth??? Grappling with her at the till it soon becomes obvious that this is no ordinary green plastic bag, this little gift is a dog poo filled plastic bag! Jesus, Where? What? How? Who’s? I then looked on her lap and perched between the fingers of her other hand was a small black bag, neatly tied, presumably with similar contents however I could not see into the black bag but my god the dog (I assume) who had once owned the contents didn’t have the same diet as dogs from my day, this bag was like a bag a slime, in fact both bags were in my opinion not how I remember dog poo as a child. Silently screaming I fought with Daisy to retrieve both bags of shite praying that the contents wouldn’t escape; swapping the bags for a dummy and my phone I was now the proud owner of two little parcels of crap. Great. What to do with them whilst paying? Is it wrong that I put them in the bin by the tills? It is, I know it is and I apologise for this selfish human act, but what’s a girl to do?

Feeling unclean, we rush back to the apartment. I thought it best to disinfect Daisy before we get in the car to head home, Why didn’t I just go home! Using any cleaning product I could find, she was scrubbed. Her hands will probably fall off today but at least they are clean. We head to the car.

Lift arrives, doors open, six people greet us, Daisy stands there with her new audience and quicker than lightening whips off her dress on the day I don’t put a vest on her. The awkward look on the two guys was priceless. So there was Daisy, top half naked, in a lift, me trying to put her dress on, her flesh touching all…….get me off the planet, please. Longest 20 seconds of mine and their life.

Finally……..

What on earth do dogs eat nowadays?

Apologies to the old couple by the till to the right of me, they should never have had to hear those choice words that spat out of my mouth on a sunny Sunday.

Sorry to the family of six in the lift. Yes, it was awkward, yes, it’s not something you expect when the lift opens, buy hey, it was only a pair of boobs, granted big, but boobs non the less!

Sorry to myself. I said I wouldn’t drink this weekend……yet again, I let myself down, hey ho, needs must.

Daisy is seventeen today. Seventeen.

No car, no handbags, no shoes, no make-up, presents have no meaning, she’s just content with me murdering the ‘happy birthday’ tune over and over and over again……..since 4.25am!

She’s full of gummy smiles but oblivious to the fact it’s her special day. She will be showered with my attention and I will do my best not to be irritated if she won’t let me change her nappy, brush her hair, dress her, feed her (hang on, that’s not gonna happen, her mouth has been in ‘feed me’ pose for a good hour!) Daisy will actually get to eat chocolate this morning as I will willingly open the chocolate buttons she always hands me in the morning, (usually they get put behind my back, then out of sight, she’s forgotten about them), this morning I will open them, you see that is all she needs to make her smile.

Today, for this incredible pain in the backside, it is just another Groundhog Day and for me, as with every year, it’s that sad stark reminder of the girl she should have grown into, the girl I should have shared so much with, but it didn’t happen, she’s stuck, un-fixable.

I’m going to try to be more up-beat today, stop beating myself up. I can’t change her, I can’t make her something she can never be. I will celebrate the years of joy she has given us (nose growing), I will also break a weekday habit and raise a few glasses of fizz later in her honour (nose now incredibly long).

So “Happy Birthday Roo”, you will most definitely be the death of me but you really are my world, not just mine, you’ve cast your spell on the three of us and we will love you forever.

Mummy, Daddy and Harv xxx

It’s now day 9 of what feels like a prison sentence. The last few days have been horrendous. Each day Daisy has not been able to settle day or night, waking for good at 1am, wandering up and down the stairs, unable to sit still, constantly punching her head, throat and nose unimaginably hard and relentlessly pointing to blank walls whilst groaning and whining. This has been without doubt one of the worst periods of post ictal activity EVER, and we have been through many.

Yesterday afternoon I went to collect my hubby from the airport, he was coming home, Yippee, help at last and someone sane (ish) to talk to. I thought the drive would calm Daisy so in the back of the car she was strapped (I chose the back as I didn’t want her to distract me with her continual punching) and off we went on our relatively short journey. OMG, 5 minutes into the trip, just as I joined the motorway she chose her moment ……… to strip. All I can say is thank goodness I have tinted rear windows. Daisy in her confused state managed to get trapped in her own dress, all I could see in the rear view mirror was her head and body hidden in a polka dot dress, arms in the air. She was getting very, very agitated, she wasn’t the only one. I was stretching backwards whilst trying to steer in a straight line, to try to help her un-trap herself but I couldn’t quite reach, then all of a sudden RRRRIIIIIPPPPP, off came the dress, now resembling a rag. She had built up quite a sweat and was quiet for the next leg of the journey but not before she she had removed her vest with relative ease and had decided her shoe would be best placed to join me in the front striking the windscreen en route. We arrived, in one piece, and whilst waiting for my knight in shining armor (said in jest) to appear I just took a moment to sit and look at Daisy in the mirror, naked, envious boobies on display, pointing to the headrest and mooing, how is this happening to me, us?

I was hopeful, having spoken to her consultant in the afternoon, that by increasing a hypnotic drug (chloral hydrate) to a dose that would knock a horse out, that we would enjoy a silent night, no wakings, no bed rail rattling, just silence. Giving the drug posed it’s own problems, prescribers never consider this, how do give large amounts just before bed, along with other drugs and try to dilute it to lessen the awful side effects, in short, nearly impossible but impossible isn’t a word I use so off to battle armed with four 20ml syringes I went, I won.

Daisy woke five times between 7 and 12 then 1.15am, yep, she was awake for yet another day of torture.

Daisy 1, medication 0.

So, day 5 of our current nightmare.

Daisy was given so much medication last night I’m amazed she woke up! 4am was her lie-in over with and I was relieved that I’d gone to bed before 8pm. It’s hard to believe that I’m actually happy with her waking so early but after three days of being up at 1am, 4am felt like half the day had gone.

Today has been mixed. She was beyond manic for the first three hours, jumping on bed, sofa……..not unusual you might think but Daisy is a 98kg 16 year old! She was laughing hysterically at nothing, punching her head, throat and nose and running, stripping, throwing anything she could get her hands on and continually ripping any nappy I dared to put on her. This did cause me a big problem as she took the opportunity to poop on her clean bedding and then run around upstairs, I’ll spare the details.

Bath.

After the bath she calmed for a bit until there was a knock on the door. A guy came to do a report on our kitchen, long story. Out came her horns and I have to say I did chuckle to myself when she ‘charged’ full pace at this poor 6’2″ 20 stone man, he looked terrified! He was a great source of interest for Daisy and I’m sure he made up all the measurements as he was gone in a flash. Flash……….yes she did!

As I’m slowly going mad with my own company I thought I’d take her for a drive, go for a walk and get a Starbucks. Mistake. Queuing at the drive thru she suddenly took a turn for the worse. She went bluey grey, started trembling and then continuously punched her nose incredibly hard, it was like a bloodbath. I was trying to clean her nose and calm her shaking just as my cappuccino appeared through the window. I reached over with blood on my hands, apologizing I asked for a serviette and just grinned at the poor guy, who knows what he thought, probably took my registration and has reported me as we speak.

I abandoned all hopes of wheeling her round the barrage and drove home.

She has now settled again and thanks to good old MacDonalds has eaten for the first time in five days which means I can also give her ibuprofen for what must be a very sore snout.

I have no idea how long this phase will last, it will end………probably just in time for her dads return on Saturday!

Seizure day, tick.

Post-ictal day, tick.

Lucid, lethargic day, tick.

Post-ictal psychosis day, ARGHHHHHHHHHHH!

Today, may possibly go down in history as the worst day, EVER, and it’s only 4.30am. Carers have cancelled on me so bring on the day.

Daisy woke at 1.35am. I thought I had a plan. Medication to sedate her was by the side of the bed in preparation for her awakening. Jumping on her to syringe it in I thought I’d won. I popped her tv on (Postman Pat 2 hour dvd) and lay her down, snuggling her into her pillow. The sound was so low only a dog would hear it. Lights off I went back to bed so that she wouldn’t be distracted by me snoring, if only! Within a minute the bed rail was rattling. Within two she was attempting to climb over said bed rail. Within three THUMP, she had.

I could tell by looking at her huge pupils that something wasn’t right, I’ve seen it many times, my heart sank. Great, what else can be thrown at me. She stripped, ripped her nightie, punched her nose that was already congealed with dried blood, threw her drink cup that I’d offered her, clapped manically all in the space of a few minutes; all this whilst laughing in a scary way.

Post-ictal psychosis shouldn’t occur in children, trust Daisy to be an exception. There is little research into it and probably none regarding mentally handicapped children but believe me, it’s horrendous to deal with. I keep a bottle of haloperidol for such occasions and have administered a low dose, but so far it’s not doing its job. My only fears today are that 1, she really hurts herself by punching her nose so hard or 2, I really hurt myself by jumping off a cliff!

Easy like Sunday Morning!

You can always tell I’ve been awake for hours when I start wittering on about inane and uninteresting things……..today is one of those days sorry. Best stop reading now.

Yesterday wasn’t good. Daisy wasn’t on the same planet as the rest of us, she was locked into her silent world with little movement (apart from her bowels ……. many times!). Sleep was alien to her the night before so I had only managed three hours sleep in total which doesn’t do my reflection much good, I looked horrific and any small child would have run screaming from me.

We started the day half a day before the rest of the planet and by 5 am bedding was changed, washed and drying, Daisy was zoned out on the sofa just staring at nothing, but not letting go of my hand……arghhhh, and I was watching a catch up of Trauma (I have to say, 3 hours of my life were wasted with that, shite ending). The day didn’t really improve. Daisy just lay like a little (cough) dead thing, not eating, drinking or interacting and to make it even worse bloody Davina McCall had replaced Holly on ‘This Morning’, shoot me now.

By 3pm I thought it best I try to bath Daisy. I prized my hand from hers and ran her a lovely bubbly bath. It took about 45 minutes of coaxing to get her to follow me and she was walking like she was on the moon, but we got to the bath and it was much more pleasant sitting next to her for the following hours.

Wine time, I mean Bedtime…….whoop whoop!

I think I fell asleep about 8.30pm, not sure, but 1am was the next time I definitely remember seeing on the clock. Surely she will go back to sleep? In the following hour I administered a sedative, to Daisy not me, changed her nappy, put tv on, turned it off, screamed, swore, screamed louder, swore more……. in fact, I half expected the police to break down my door, surely someone heard me scream? Course they didn’t, we are alone. They say sleep is for the weak, I wanna be weak……….

So today, let’s see, she’s a bit brighter looking, she’s sitting rather than lying down, she’s holding her iPad to her ear listening to Fireflies on repeat, she’s not eaten or drunk anything but it’s early so I’m hopeful. She is still silent but giving me the odd smile. Oh, and I haven’t smothered her! I do wonder if her insides are dissolving though as there can’t possibly be any more nappies to change, but they keep on coming.

HAPPY SATURDAY

I was woken at 4.45am by the awful sounds of Daisy suffering a seizure. I bolted out of bed and she was face down into her pillow, blue lips, gulping for air. I dropped the bed rail, straddled her and pushed the pillow deep into the bed so that I could remove the dummy and let her get some air. It lasted about three minutes but felt much longer. I lay next to her and fell back to sleep.

5.50am it started all over again. This time the seizure seemed much longer but probably wasn’t however the shaking and groaning was very alarming. I held her hand and watched her.

9.05am I decide to administer emergency medication to halt this next seizure. She sleeps.

10.30am, you get the picture……….

We are now on the fifth seizure and each one has increased in intensity. It’s 2.35pm and Daisy hasn’t woken yet. I’ve tried to rouse her by talking and singing (that’s enough to rouse anyone!) but she doesn’t want to join the world today.

I’m hopeful there will be no more, I can only give one more dose of emergency medication so I am praying to a God I don’t believe in that she will wake soon and ask for yum yum. I fear it’s going to be a long day and night but I know she will recover, she always does, this time it might take a little longer but she will soon be driving me to distraction once again, of that I can be sure.

So, I’m sitting next to her on her bed, with a hot water bottle on the base of my spine (a back ache as a result of trying to change her nappy) ordering clothes I don’t need and reading stories regarding epilepsy that I shouldn’t be reading. Life was never meant to be like this. Today it sucks.

It’s been a while I know but you really would not have wanted to read what I had to say for the last few months! It’s been very difficult, emotional, tiresome but hey, shit happens and now we must get on with our lives.

Daisy is amazing. Don’t get me wrong, she has not sprouted angel wings in the last couple of months but what she has done is shown what an incredibly strong character she is. The incomprehensible pain she suffered last year is forgotten in her world. She has forgiven me, I can see it in her goofy (bad choice of phrase) smile. Every day I’m reminded as I stare at her lost looks and I feel so sad but what’s the point, I can’t magic her teeth back, they have gone and she didn’t even have a chance to pop them under her pillow for a pound off the tooth fairy (not sure what the going rate per tooth is nowadays but if it’s more than a pound per tooth, wow, it’s just as well that b****h of a dentist didn’t give them back to me!) Damn, I knew my bitterness would slip in.

So, what has changed? Well, Daisy has lost quite a bit of weight but I guess if you have 21 teeth butchered from your mouth and don’t eat for nearly a month because the pain is so intense weight loss is inevitable. Her seizure pattern has increased, oh and she looks like a little gummy old lady! Unfortunately her sleeping pattern hasn’t changed and she still insists on torturing me with rattling her bed rail at 1, 2, 3am, in fact I have to say that on certain nights it’s actually been her lack of teeth that has saved her life for if she hadn’t given me a toothless grin I swear she would now be in the great big dentist chair in the sky!

Does Daisy care about looks? Does she heck. This blissfully unaware teenager just gets on with being Daisy but me, being the selfish individual that I am, well I’m devastated and I doubt I’ll ever get over what has happened to her. Everyone tells me you can’t tell until she smiles but they lie to be kind and many would argue this, but I’m not daft!

So, here we are, 2018. Another year and who knows what will be thrown at us? Who knows what will test my patience? What I do know is that whatever happens Daisy will remain un-phased. Me, assuming my liver holds out, will do my best to care for this incredible girl who on alternate days I want to love and then murder. She tests every part of me but ultimately she needs me so I will fight for her, what has happened isn’t over but so far as my tedious posts go it is and no more will be said……….famous last words!

I’ve invented a new word. It’s only ever going to be relevant to a handful of people, well to be precise just me (and my husband, very, very occasionally).  Drum roll please……….the word is ‘Roo-lag’. I think it should be defined as ‘a physiological condition that affects your ability to function in a pleasant, calm and tolerable manner due to constant sleep disturbance and ridiculously early mornings’. Symptoms include irritability, excessive eating (due to being awake for 20 hours out of of 24), ugly black circles around eyes, self loathing and complete child loathing. Treatment, none found as yet. Clinical trials ongoing but a possible solution could be in the form of a bullet right between the eyes.

I shouldn’t be nasty, it’s not Daisy’s fault but it’s so difficult to be nice when tiredness envelopes every part of me. I think this episode of sleep disturbance is due to a tooth problem. I may be wrong but Daisy has not been eating well for quite a few weeks (hasn’t lost any weight though). She is booked in for an ‘urgent’ tooth examination under GA but that ‘urgent’ request was three weeks ago and as yet there is no sign of a date. Daisy isn’t like any other child. She can’t go to a dentist and just open her mouth for a peek at her pearly whites, no, my bloody child needs a GA for a simple procedure. This will be her third one for tooth examination, it’s horrendous but has to be done. She can’t indicate pain, she can’t tell me if her mouth is throbbing or her throat is hurting. I have to guess by process of elimination. It’s all guess work. Sometimes I get it wrong, mostly I get it right.

She was up at 4.30 today. Breakfast has been served since 5.30. Normally it would be demolished in minutes but today it is sat there, laced with some medication. It remains untouched. Quavers will be offered soon, I’m holding out but inevitably they will be placed on the platter in the hope her appetite may trigger. She doesn’t appear unwell, she’s giving me nasty glares and I’ve had some high pitched screaming from her so I’m now going to attempt to dress her and medicate her, I have a feeling this isn’t going to be easy this morning.

I have to go, she’s just kicked her banquet on the floor. She will be lucky to make it to school……….alive, arghhhhhh!