She sleeps………

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 long time………

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!

Said it before, I hate Mondays.

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! 

Happy Days

We have had a few good days this week which is a rarity I know. Daisy had a positive experience at Touch Trust on Saturday (a sensory session that focuses on touch and positive feelings). I was apprehensive before the session as not only did I think it would be a complete waste of money but also Daisy had proper ‘kicked off’ in Costa Coffee en route, targeting the only two couples quietly enjoying their drinks, so we (Harvey was my second pair of hands) were convinced she would continue with her destructive, angry mood – we were wrong. She sat in the dedicated Touch Trust room which had a hippyish almost Ottoman tent vibe and waited patiently. Daisy has a strange obsession with pipes in ceilings, odd I know, so immediately spotted them and happily for the first ten minutes pointed and pointed and pointed whilst we had to keep repeating “ooh, yeh”.

The session began. Sensibly I chose to sit on the opposite side of the room to Daisy, Harvey drew the short straw and was perched next to her on a sofa. It began with an introduction and we each in turn had to clap each other as a welcome. There were six of us in total. Daisy, me, Harvey, the therapist a young man and his carer. Daisy loves to clap and doesn’t understand ‘taking turns’ so happily clapped……a lot!

A bit of weirdness followed, we had to remove negativity from our bodies by almost brushing it out with our hands…Harvey had to remove Daisy’s (she would need a heck of a lot of ‘brushing’ but he went along with it). He held his hands close to her skin and ‘whooshed’ all negativity away, I couldn’t look at him, I’m so immature at times. Daisy sat quite happily as all her demons were exiting her body, I smirked at Harvey. Harvey was the sensible adult and ignored me.

Next – choose a musical instrument. The young man chose some cymbals, noisy cymbals, but he was loving the clanking they made, we clapped, a lot.  Daisy’s turn. She doesn’t understand the concept of choosing or playing an instrument. Harvey chose a shaky bell thing, he shook it for Daisy, we clapped, a lot.

Next Elton John – not in person, now that would’ve been something, no, a rendition of ‘I remember when rock was young’. Daisy didn’t get up to dance but was smiling and jigging on the sofa. Thinking I could just sit and enjoy the show, I was then encouraged to dance to try to entice Daisy to her feet, I threw some shapes on my imaginary dance floor but Daisy remained on the sofa, clapping. Harvey’s turn to smirk.

The session ended with the lights dimming and some soft music. Daisy was still clapping whilst the therapist seemed to be meditating, I was grinning, Daisy was now ‘yum yumming’, loudly! More clapping. The hour ended and both myself and Harvey felt that it was money well spent. Strange, but a success. If Daisy can remain in a room without escaping, pushing, pinching, hitting or grabbing someone for a whole hour it’s a success. We will return.

On Sunday Daisy behaved herself whilst out with two carers for a few hours. The previous week she was returned after less than an hour because she had hit a pregnant woman who was having a nice stroll with her family. I found myself apologizing for her behavior to the carers as I always do. The lesson to be learnt is to think of possible incidents before they happen then maybe they won’t happen.

Sunday afternoon, the car. I took my usual route which has a benefit of  Starbucks drive through so it’s a win win situation as Daisy will happily moo, quack and grunt at all forms of wildlife on her car journeys and I get my triple shot caffeine hit.

Daisy is now at Ty Hafan (children’s hospice) for respite for a few days. The reports so far are promising, she’s being a diva so must be enjoying herself. My anxiety due to guilt has waned. My house is clean, washing is up to date, all internet purchases are being delivered to the Esso garage so hubby won’t see them and so here I am catching up with all the reality sh*t tv that I love, Love Island, Ex on the beach, Big Brother……..drinking plenty of wine, eating too much chocolate and basically doing very little. I know this period of my type of heaven won’t last too long but for now I’m enjoying not having to do much, hubby is home tomorrow so my only job before I go to bed is to bury all the empty wine bottles in the bottom of the recycling bin.

Glass is empty, time for a top up.

Same old sh*t

I haven’t written for a while, no excuses. What have you missed? in a word ‘nothing’. That’s the thing you see. Nothing changes, it’s just the same old sh*t week after week. Ridiculously early mornings, an annoying silent and incredibly irritating child who demands constant attention slowly draining me. 

As you can guess, I’m in a rotten mood today. It was 3.46am when I gave up trying to get Daisy back to sleep. I stupidly thought I would have a better night as the temperature had dropped to 26 in her room and she didn’t look like she was melting for the first time this week, I was wrong!. She was clapping, pointing to the tv for about twenty minutes, pulling me, tugging me, pinching and clearly she had a death wish so I thought rather than having to explain to the police why I’d murdered my daughter with a large plastic Iggle Piggle, I’d better splash my face with cold water and face another day of ‘living the dream’.

Daisy is sat with me on the sofa. She is surrounded by toys she can’t play with and books she can’t read. Rip, yes, read, no. They are repeatedly thrust into my face to wind and press. Fireflies is playing on repeat on her iPod, it’s a tune that is constant, I hate it but I don’t really hear it anymore, it’s just always there, in the background, tapping away at my patience, waiting for me to snap! Today she wants ‘me’.  Not a great day to want ‘me’ as I’m grouchy but as she grabs my hand to wind her Fimbles toy, I look at her and feel such sadness that at 16 years old, this is her life. She is stuck in Groundhog Day. She is happy, I’m sad. She gives me a grin and a wiggle.

Over the past few weeks Daisy has had good days and bad days. Seizures , unidentified illness requiring probably unnecessary antibiotics, aggressive unprovoked behaviors, hospital appointments, dental appointment (unsuccessful), me constantly saying sorry for outbursts (not mine, hers), stripping (not me, her), more bedding washing than you’d think is humanly possible, voluntary nil by mouth days, anything-that-fits-into-her-mouth-and -can-be-swollowed-days, constipated days, complete bowel evacuation days, silent days, high pitched screaming days,.

It’s 5am now. madam is ‘yum yumming ‘, best not keep her waiting or she’ll punch herself in the snout. So there we have it, as I said, nothing changes, same old sh*t, different day.

Bank Holiday Blues

4am. 4 bloody am. It’s bank holiday Monday, what’s wrong with this child? The rest of the world is sleeping, even the birds can’t be blamed today as they are having a lie-in.

I hate her this morning but Daisy is so happy. Even me shouting and screaming doesn’t stop her being happy, she just is. She’s pulling and prodding me, trying to talk, communicate. She want’s up and I have no choice  (well I do but what I am feeling I would like to do right now would see me with a life sentence!) I have  to get up and I’m angry. I’m angry that my husband is in some fancy hotel somewhere in the world enjoying sleep. The neighbours are asleep, in fact everyone is asleep apart from this stupid child of mine!

I feel like I’m going to explode with rage, bitterness, jealousy. I must have been rotten in my past life. Maybe I was a mass murderer? Hang Man? Torturer? All my past lives are coming back to plague me.

Today is going to be one of the longest……ever! I’m so envious reading of all the families on their day trips and get togethers. Do people intentionally try to wind me up? Are their lives that great? The answer is probably ‘no” to both questions but that doesn’t make me feel any happier. For me its just another day of caring for this girl whom time has stood still for. No day is different. She is just happy to hold the same toy Fimbles (even that she can’t bloody wind), look at pictures in the same bloody books, watch the same bloody tv shows. Nothing changes, nothing has for sixteen bloody years and I’m angry.

So there we have it, Bank Holiday Monday P**S OFF!

And I wonder…..

I didn’t know how I could write about my woes regarding looking after Daisy following the horrific Manchester atrocity but the reality is life goes on for all of us, we cannot help those who have lost their precious lives. We can cry for the pain of the people lost and left behind but for us that are distanced from this awfulness we have to continue living. My life is shadowed with what now seems trivial moaning and whinging but the world doesn’t stop for those of us left in this mad, sad world, we have to carry on.

Daisy has had seizures today. Awful violent scary seizures. You’d think that after all the hundreds of seizures I’ve witnessed that I would be conditioned to cope, but I’m not. They never get any easier. I despise them. It’s torture to watch and feel so impossibly helpless. The first one was 3.10am. I bolted out of bed when I heard the gulping and distinctive ‘seizure’ noise. Daisy had blue lips, her eyes were rolled into the back of her head, her neck was stiff and her body tight. It lasted about 3 minutes. That’s a long time when you’re waiting for it to end. You wonder if it will end. Is this the seizure that will end Daisy’s life? That sounds dramatic doesn’t it, but it’s how I feel every time. The darkness does leave me as soon as she breathes again, but it’s there. These wretched seizures don’t just endanger her life – each one erodes her brain.

I lay next to her, holding her tight. She groaned and moaned until eventually we both fell back to sleep.

5.30am. Another seizure. This time her face was in the pillow so I had to force the pillow into the mattress so that I could remove her dummy and stop her from suffocating. 2 minutes later it was over. Daisy let out an awful deep groan and entered into a phase known as ‘postictal’ which is a recovery phase. Daisy tends to have very long periods of postictal phase, 3,4,5 hours. Today’s will be interrupted with more seizures, of that I have no doubt. Will I be forced to use her emergency medication? I don’t know. I just have to sit and wait.

With the seizures come complete bowel evacuation. It’s so difficult to clean up an unconscious 16 stone girl. Getting the nappy off is the first hurdle, cleaning is the second, fresh nappy third, removing the sheet beneath her the fourth. There is no help. I’m not that strong, but I have to clean her up somehow and I do and I am knackered.

So today, whilst sitting waiting for the next seizure, I will try not to feel sorry for myself or for Daisy. Yes, it’s shit. Yes, the next 2 or 3 days will be shit but d’you know what, it’s a card we’ve been dealt, we live in a shit world.

So, as I’m sitting, holding Roo and listening to Will Young on the radio I’ll leave these words …………..

“Eyes, like a sunrise,

Like a rainfall

Down my soul

And I wonder,

I wonder why you look at me like that

What you’re thinking, what’s behind

Don’t tell me but it feels like love………..

I’m gonna take this moment and make it last forever

I’m gonna give my heart away and pray we stay together

‘Cause you’re the one good reason

You’re the only girl that I need

“cause you’re more beautiful than I have ever seen

I’m gonna take this night

and make it evergreen.


Damn you and your lyrics Mr Young!