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.

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.

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!

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!

Isn’t is ridiculous that a sixteen year old girl has a dummy? What type of rubbish mother allows her teenage daughter to suck away, ten to the dozen, on a ‘da’? The answer, me. Believe me, I’ve tried for years many different ways to rid Daisy of this ugly facial adornment.

The vinegar trick was the first attempt as it had worked with Harvey (on his third birthday, what a treat!) He loved his dummies, hid them all over the house, so the vinegar trick had to be executed as he was now a ‘big boy’. So, here’s what you do:

1.Overnight you soak all visible dummies in a bowl of malt vinegar.

2.Remove delicious vinegar flavoured dummies from vinegar and place around the house

3. Wake your angel from their sleep

4. Explain to them that a fairy has visited in the night and as they are now three years old the time has come to be a big boy (or girl).  A spell has been placed on the dummies and they will no longer like to suck them

5. Your child will laugh in your face and upon finding their first dummy ram it in their chops………then spit it out.

6. After hesitantly testing a few more they realise a spell has been placed and voila, success!

Worked for Harvey a treat. Didn’t work for Daisy. She loved the new flavoured dummies, couldn’t get enough of them, even placing two or three at a time in her mouth.  Obviously, the spell story didn’t work either as I could’ve been talking Russian, she didn’t understand a word.

Over the years Daisy has gone through phases of needing or not needing her dummy.  Always sucked in the night but often daytimes we could get away with hiding them and she would forget she needed one. School used to remove it as soon as she arrived and she would not be given it until home-time however during the last couple of years she has become more reliant again (School even allow it during the day as she is more comfortable with it in class). It’s her comfort. It calms her. It distracts her from other idiosyncrasies……yanking her hair out, strange involuntary mouth movements, chewing her toes (yes, she can!) You see, when Daisy gets upset or frustrated she punches herself in the nose, hard. Faced with a child wanting a dummy or breaking their own nose there’s an easy choice. Her dummy sucking doesn’t bother me. It makes for an easier life. This is not the way it should be but it’s the way it is. She’s sixteen. Of course she shouldn’t need a dummy but she likes it. It’s her vice just like wine is mine so for that reason alone I’m not going to remove that one bit of pleasure for her anytime soon.

Noddy had it this morning……….a full on punch in his stupid peach skinned, blue-eyed, silly-hat-with-bell wearing face.  It was him, the wall or Daisy, I chose the sensible option.

My morning had started really well and Daisy was happy to be dressed and nappy-changed. She ate all her breakfast, gave lots of ‘do-be-de-doo’s”, lots of smiles. Then it all went wrong.

I haven’t noted any outbursts recently, (when I say recently I mean a few days) as Daisy has been really happy and content however both school and the respite home have commented on her aggressive out-of-the-blue behaviours where she has ‘attacked’ children and adults alike, no preference, everyones a target when she has one on her!

So, dropping my guard this morning, I drew up her medication into various syringes and armed with the obligatory custard cream biscuit I confidently took aim with the first shot, then,  ‘KAPOW’……I was launched across the room as a rather impressive kick from my precious little donkey caught me unaware. It didn’t half hurt. Peeling myself off the floor I wanted to scream but over the years I have learnt that the only way to win with Daisy is to sing songs to her……..so, after being winded and feeling like crying and Daisy still in need of medication I found myself singing, “Miss Polly had a dolly who was sick, sick, sick…….” I braced myself and took aim again, this time sitting on her left arm to prevent injury to myself – damn her right arm and damn Noddy who was perched within her grasp. The bell on his hat caught me and believe it or not was bloody hard when swung at the speed of light into my face. Furiously I straddled her and with her cheeks between my thighs squirted her medication in then ran……fast.

So, that’s why Noddy had it this morning……..who knows tomorrow it might be Postman Pat and I’ll take pleasure in punching the annoying tw*t if the chance arises.

I was watching Daisy on her bedroom monitor this morning………she was just sitting up in bed, dummy sucking in and out of her mouth, rattling the bed-rail furiously to get attention. I really couldn’t be bothered to get up and see to her, I just lay and watched. The rattling got more and more intense until ‘snap’ yet another bed-rail broken……..bloody hell, why didn’t I just get up after all it was just past 5am, grrrrr!

Our morning went quite well. The newly turned 16-year-old was delightful. Nappy change…..tick, breakfast……..tick, dressing……..tick, medication………tick (after three attempts), another nappy change………tick. No remotes, make-up, food, toys, iPads, iPhones were offered to me whilst I showered – could this be the new grown up Daisy?

School.  Work.

Daisy arrived home and was still in this gloriously happy and compliant mood. Her food was ready and waiting and feeding went without a hitch. After dinner I settled her beside me and put on her favourite programmes, today I chose Clifford the Big Red Dog………She excitedly meowed, barked, quacked and hissed, she was so happy. I was happy.

Even now, after all these years, it’s the small mundane things that make me stumble, which jolt dark feelings buried deep in the recesses of my mind……………..

Opening Daisy’s home / school book I came across a certificate. It was a ‘Celebrate Success’ Certificate.  It read:

“Congratulations to Daisy for turning the pages in the book, Well Done”

Well Bloody Done!!! How can I feel pride seeing such a certificate? Turning the pages in the book!!!  It was a stark reminder that Daisy is not your average 16-year-old by any stretch of the imagination and as I sat watching her programmes with her I felt myself just staring at her.  She looks much, much younger than her years but I guess a typical 16 year old girl is nowadays caked in the latest MAC make-up to see their true identity; she has an enviable innocence, a fuzzy, goofy, infectious smile and the amazing ability to make me feel such deep love; Daisy is oblivious to her problems and that is such a blessing, she has a pampered life so I really should not get hung up on her certificate, I should just accept it after all, she can turn the pages of a book for goodness sake!

Behind our front door it seems weirdly normal to have this unusual girl, sometimes manic, sometimes passive but with a strange gift of being able to bring joy.  Sometimes I want to kill her, throttle her, beat her with a big stick, but these are just wine induced threats, I would never lay a finger on Daisy, for if I did, boy she wouldn’t half wallop me!

 

 

Tomorrow Daisy reaches a milestone in her life, it’s her sixteenth birthday.

May 9th 2001 I had so many dreams for my new gorgeous baby girl. Those dreams have never materialised and never will.  Instead when out shopping for a suitable present today I have been struggling, as I do every year, to come to terms with her condition.

Tomorrow, Daisy will not tear open her presents with excitement, blow out candles on her cake, laugh and giggle as friends visit to share her special day. She won’t have girlfriends over for a sleep-over, get the giggles after one glass of champagne or sneak kisses with a boyfriend. No, tomorrow for Daisy it’s just another day but I will do my utmost to make it special for her.

Tomorrow I will celebrate her 16th. I will open her presents for her and clap hands until my palms are sore. I will feed her cake and crisps and chocolate until she can eat no more (I might be feeding her for a good while on that one!) and I will give her all my attention all of the time for this is the least I can do.

Daisy has changed our lives but we need to celebrate and thank her tomorrow.  There have been so many low points in the last sixteen years, unbearably difficult and painful, but set against that have been so many unexpected highs. She’s funny, unpredictable, adorable, cheeky and she has enriched our lives. Yes, without her our lives would have been so different, so much easier but in truth, so much poorer.

So I’m wishing Daisy the happiest of days for tomorrow………mummy’s gorgeous, special little girl.

I should be happy right now as I’m off on a girly ‘cultured’ weekend to Amsterdam in the morning, can’t wait. I’ve packed my case, painted my nails, had a ‘few’ relaxing glasses of wine, so why am I feeling crap? Why have I cried for most of the evening?  It could be the fact I miss my husband and son……I do, I really do. It could be that I’m lonely, I am, but the biggest reason is that I have left Daisy at a hospice and that aches my heart. The hospice is the most wonderful, amazing, caring and friendly respite facility I could ever dream of sending Daisy to however the fact remains it’s a hospice and that means it is for children who are life limited. This I struggle with.

Daisy was being treated like a princess when I left her. She was soaking up the attention and loving every moment. She didn’t care when I said goodbye, didn’t turn to watch me leave, didn’t understand.

When I drove the half hour drive home this evening I cried a river……..bloody ridiculous isn’t it. I blame Gary Barlow – no, unfortunately he wasn’t in the car with me at the time but he was singing a particular song on the radio ‘Rule the World’ which always starts me off. I hope no-one noticed my blubbering as I must have looked a right state behind the wheel.

I know Daisy will have a fabulous weekend, she deserves to smile and giggle and fall about in fits of laughter – actually, that’s an inappropriate term to use for Daisy as she  is an epileptic, so lets just wish for lots of laughs!!

Me, I’ll be fine in the morning………look out Amsterdam!

 

Yeah, you and me, we can ride on a star

If you stay with me, girl

We can rule the world

Yeah, you and me, we can light up the sky

If you stay by my side

We can rule the world 

x

 

 

Crap afternoon followed by a crap night and now it is precisely 4.42am, I am sitting in the kitchen, Daisy is scoffing a banquet of offerings, bedding is having that pleasant smell of urine removed in the washer, I have very strong spoon bending coffee and bloody Dora the Explorer is chirping away……..If I ever meet her I’ll stick that backpack……

Anyhow, Daisy had a lovely day yesterday spending time in a sensory room then visiting a park, horses, swing, so thinking she would be nice and calm I took the decision to nip to M&S to get some currency for a little trip whilst Daisy is at Ty Hafan next weekend.  Daisy doesn’t ‘do’ shops so this wasn’t a decision I took lightly but as I was only running in I thought she would be fine.  I parked in a great disabled spot  (one benefit of Roo) right outside the doors and did wonder if I should leave her in the car however my sensible head got the better of me and so I strapped her into her wheelchair.

We were on a mission, whizzing through the pensioners (there must have been a coach trip), dawdlers and chatters…………..  I then made a terrible error of judgement……I stupidly tried to manoeuvre the wheelchair through an aisle that was not made for ‘wide’ chairs.  Socks one side, a display of schoolchildren in an array of school uniforms the other.  I wasn’t anticipating Daisy would decide to stick her leg out at right angles at the sight of the mannequins.  We came to an abrupt stop.  Daisy wasn’t happy that I’d nearly removed her right limb so took her distress out on the poor schoolboy to the left of her, completely removing his arm from its socket……it dangled in his jumper and as I was trying to ‘pop it back in’ she grabbed a rack of socks.  She had a couple of five packs in her mouth whilst the metal rack crashed to the floor.  It was at this point a lovely lady from M&S rushed over.  “Are you ok”, she gasped, “Oh my god, is she OK” she exclaimed.  I feigned shock, pretended to check Daisy over and assured her that Daisy would be fine and that the wheelchair must have clipped the shelving.  The lady apologised to me! Asking if there was anything she could do to help!  I was going to suggest shoot Daisy but just smiled and said don’t worry, it’s fine.

We left.  I didn’t get my currency.