Well Done Daisy!

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!

 

 

Sweet Sixteen

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.

Rule the World

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

 

 

Armless trip to the shop

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.

‘Controversial’ Klaxon

Its 4.10am on Thursday morning and I’m sitting downstairs feeling a bit a bit shit!

Daisy has woken so many times in the night I am unsure how many times I actually got up……….she was clearly very uncomfortable and couldn’t settle herself  (Ibuprofen and paracetamol were no comfort) so at 4am I gave up and brought her downstairs.

It’s too early for breakfast and even CBeebies hasn’t started yet so one her many saved programmes on the planner goes on – In the Night Garden seems to have put a smile on her face.

Reason for the discomfort, you guessed it, period!  I shouldn’t really go into my rant as this will probably alarm many, disgust some and down right offend others but as I’m very tired I will.  Daisy will NEVER have a relationship. Daisy will NEVER have sex.  Daisy does not need to suffer the pain and discomfort of periods every month for the next 40 years as she will NEVER have a baby.  Daisy wears nappies for goodness sake and therefore not meaning to sound selfish, its not pleasant or dignified dealing with the aspect of changing her.  So my question is this, why can’t she have a hysterectomy?  The reason, apparently is that she DOES have the right to have a baby and I would be taking that right away from her!  As awful as this is going to sound lets be clear, the only way Daisy could ever get pregnant is if she was raped!

Now, I’m all for disabled peoples rights and would be the first to support any law that affected those rights but in this case surely the law should look at individuals and not the disabled female community as a whole.  Every case should be taken on its own merit.  I don’t have some master plan of whipping out the wombs of every disabled woman who walks the planet, I just want to comfort Daisy.  Some have said to me that allowing Daisy to have such drastic surgery is incredibly cruel, selfish on my part and unnecessary but I wholeheartedly disagree.  I’ve looked fully and thoroughly into all the options and a hysterectomy would be the right choice for us.  Daisy suffers from seizures; some of those seizures are linked to her periods.  Seizures could kill her one day, so apart from the monthly suffering, to me this is an extra added risk, a risk that could be removed.

This is a sore subject that Doctors cannot agree on and seem very uneasy discussing……….what kind of mother would choose to do this to her daughter?  A good mother or a bad mother?  I truly believe a good mother who only wants her daughter to have the most comfortable, pain free, happy life she can give her.  I don’t know if my views are shared, I guess everyone is entitled to an opinion, but all I know is that I would never ever do anything to Daisy if I didn’t believe it was in her best interests.  Daisy is my priority, I will do what it takes to help her………at all costs.

Watch this space!

“Do Be De Doo”

Daisy has been sprinkled with fairy dust today!  OK, so they had to use a heck of a lot of the stuff but nethertheless she must have been sprinkled as she’s been an angel.  So different than two days ago when she had horns either side of her head and was ready to go to war with anyone in her radar.  That’s the trouble with Daisy, no two days are the same, nothing is predictable, plans cannot (and do not) go to plan all depending on her mood.  It unnerves me that she’s so happy because I know the bubble will burst, but I am going to enjoy her for the time being.

Anyone who’s ever helped care for Daisy will know that she has a ‘naughty noise’! The ‘naughty noise’ however is a fun noise, it is only heard when she is in a good mood. So,when I heard ‘doo be de doo’ in a high pitched tone this morning I knew something was up. I followed the tune and there she was, butt naked, standing in her brothers bedroom window, humungous boobs displayed to the waking world, waving her nappy – clean, like a flag and barking at a man walking his dog, (who nearly walked into a lamppost)……..dear god, she is absolutely bonkers and has no shame!  I waved to the man (with two fingers) and pulled down the blind pretty sure that one day she’s going to cause a nasty accident outside our house.

Isn’t it heartbreaking then, that this morning whilst she’s in this most perfect mood, I noticed two really nasty blisters on her heels.  She didn’t hobble or moan, she didn’t complain of pain because she can’t, I just happened to see them when I was dressing her.  The skin was broken and looked really angry……..she must have been in pain the day before but couldn’t tell anyone, this I find unbearably sad.  Imagine not being able to say how you feel or do anything about discomfort.  Daisy has always been really tough but still must feel pain of some sort.  I usually notice any mark or bruise (ask the school) immediately, so missing these blisters has upset me.  Poor little thing.  Plasters on, she’s oblivious.  Off to school she trots.

 

Oh my Giddy Aunt!

Can you get bird flu from handling a dead bird…….. in your mouth?  Just throwing that question out there.

Today, had been a really good day,  that is until a bird crashed into my kitchen window (annoyingly,  I have just paid an extortionate £25 to have cleaned).  Sadly the bird died.  This is a regular occurrence (must be those clean windows!).  I think this is bird number four to have perished due to my shiny panes, anyhow, less of the showing off, I shouldn’t be proud to be a bird killer!  In the past, I have had husband home to pick up and dispose of birdies or I have called upon neighbours, today I needed neither.

I studied the bird for at least 5 minutes through the glass until I was sure it was dead (feet pointing skyward was a bit of a giveaway but in the past I have screamed like a banshee when they come back to life just before imminent disposal).  I decided my best course of action was to ask my neighbour John to remove it from my patio when he was free, he’d love to be the hero.

Over to John’s I popped.  Daisy was sitting on the kitchen sofa.  John wasn’t in.  Daisy was not on the sofa when I returned.

Daisy was pushing her red bubble car around the garden……..nothing unusual in that, she loves that car, has never fitted in it but loves to circuit the garden endlessly by pushing it around and around and around; what was unusual was the black mass hanging out of her mouth.  Oh my giddy aunt!

I should have known not to leave the bird uncovered.  A similar incident happened years ago when she actually had most of a baby bird in her mouth (that was still half alive)  this time I felt luckier …….. not only was the bird dead, but it was too big to chomp on so removal was quite easy.  She was a little reluctant to hand him over at first but I offered a swap for two dummy’s and feeling sick, took it out of her mouth, (bloody hell it was still warm), she couldn’t resist those dummy’s.

I still feel shaken up……medicinally I have had to have several glasses of wine so excuse my grammar.  Daisy has been scrubbed, the bird is in the dog poo bin over the road and I am still in shock.  So, like I said at the beginning………can you get bird flu from handling a dead bird – in your mouth?  Lets hope not!