‘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!

Who knows what tomorrow will bring

Dear Daisy

Who knows what will happen in the future?  Man has been to the moon, Doctors seem to perform ‘miracles’ on a daily basis, your father didn’t ‘kick-off’ when I suggested we look at a new property, so maybe, just maybe, one day your brain can be fixed.

I’m writing you this in the hope that “that’ day is not in the too distant future and you will be able to understand that everything I do – everything, is to make you happy.

I was broken hearted when I dropped you to respite yesterday………I hate doing it, I feel such guilt and it didn’t help that you wouldn’t look at me or ‘bow’ your head for me to kiss you goodbye.  Do you hate going?  Do you like going?  Do you wonder if I will ever be back to pick you up?  Do you care?  I don’t know how you feel, everything is guesswork.  You were so tetchy yesterday and I tried everything to just make you comfortable and happy but you weren’t playing my game.  

I sat for what seemed a lifetime with you holding my finger whilst watching endless episodes of Teletubbies.  I played your favourite tune in the car (on a loop). I drove to the park to take you to the swing (which you fell off).  I took you to look at the cows and horses in the field down the lane, you didn’t even react to them, you were so moody.  We single handedly added a big hole in the ozone layer with the miles we drove, yet when we got home, you still seemed so unhappy and irritated.  Are you suffering?  Are you frustrated?  What can I do to help you?

Unfortunately Daisy you’ve drawn a very short straw and you are stuck with me so we have to make the best of a bad situation.  You will never want for anything, I can give you all you need (thanks to your dad), but the one thing I can’t give you – yet – is a useful brain; that day will come, I’m sure of it, but until then we just have to get through each day, and if you’re happy we are all happy.

I love you Daisy, I’m just so sad for the life I’ve given you x

Wink wink!

Husband back in Africa.

Son back in Birmingham.

Just me and madam now.

Daisy doesn’t like me today……..she’s not in the best of moods.  It’s been a very long day, 4.45am was the start, now she’s drugged so I’m hitting the remainder of a bottle of Prosecco.

I’m unsure if it’s PMT she is suffering or the effects of glue!  You see, yesterday, as it was my hubby’s last day with me for a while, I thought I’d make an effort and glam up a bit.  So, out came the falsies…….no, not breasts, lashes!  I added the glue in a nice straight line and waited the 20 seconds as instructed on the package, damn that instruction!  Daisy saw her window of opportunity as the lashes sat on the dressing table and assuming everything is edible down the hatch they went.   What to do?  Would they stick to the insides of her throat and act like ‘car wash brushes’ as her food went down?  Surely not?  I tried to prize her mouth open but realised this was a bad mistake as she tried to remove my finger with her VERY sharp teeth.  I looked on the package (seriously, I actually looked) to see if it said anything about swallowing lashes, strangely, it didn’t – this needs to be addressed by the manufacturer in my opinion.  So, I googled ‘swallowing eyelash glue’ and its amazing how many dogs have swallowed it!……….Anyhow, assuming Daisy would have the same effect as a puppy , I think she’s going to live…….They have not re-appeared yet, I just hope they don’t get stuck at the exit point, that would be weird looking, eww!

 

Crappy Easter!

Today was supposed to be my lie-in.  Nick had offered to get up with Daisy so I was looking forward to an extra hour in bed.

Daisy woke at 4am, that wasn’t in the plan so I said I would try and get her to go back to sleep…….an hour of me screeching (and threatening death) later, Nick could take no more and took Daisy downstairs so my lie-in could begin at 5am.          zzzzzzzzzzzzzzzz

6am…………..I bolted out of bed, Nick was like a mad man, screaming words you wouldn’t want to hear on Easter Monday!  Daisy had in his words ‘shit everywhere’, but I think the problem began when he tried to change her nappy and had to deal with an up-the-back job!  I took over – bathing her, cleaning, stripping bed, steaming downstairs floor, the list goes on and on and on.

7am, my ‘fresh as a Daisy’ little ray of sunshine (grrrr) and I went downstairs, me desperate for a cup of tea, Daisy in need of food to top up her empty intestines.  As I walked through the hallway I smelt a waft of nastiness in the air – surely there can’t be more poop it’s not possible but there was a definite odour.  I checked Daisy’s nappy – nothing, I knew it wasn’t me, so just as I was about to question Nick I caught a glimpse of ‘something’ out of the corner of my eye……..a trail of brown ‘splodges’ followed me, bloody hell, I’d trodden in shit and now I had to re-trace my steps to source it.

……………When I ordered my ‘leopard print’ stairs and landing carpet (yes, you read correctly), I thought it was such a great purchase.  It looks stunning against a white wooden hallway floor, fits in with my modern contemporary home, but and it’s a big BUT, you can’t find ‘shit’ on it!!

Nick and I were on our hands and knees for at least half an hour….up and down the stairs, smoothing our hands across the carpet looking for traces of Daisy’s insides……..we still haven’t found ‘it’ so I’m hoping my slipper scooped up an entire lump, but I’m still on the lookout and definitely won’t be barefoot anytime soon.

Happy Easter!

Honey, I cured the kid!

Apparently, hay fever affects 25% of the population, so it stands to reason that Daisy decides to be one of the percentage!

She started suffering about 5 years ago…….first year,  just your usual itchy eyes and sneezing but jeez, by year two she really did suffer bless her.  So, Daisy being Daisy (and also being as daft as a box of frogs)  didn’t just rub her eyes when they itched she actually stuck her finger in her eye sockets and rubbed from the inside!  It was absolutely horrific to witness but we all know what its like once you start rubbing an itch, you just can’t stop, and Daisy was no exception to that rule.

Every anti-histamine was tried but none were a match for her index finger!

So, two years ago I thought I’d try local honey as I’d read it can de-sensitize the body to local pollen………..crazy lady I hear you say, and believe you me I’m the worlds number one sceptic, but what harm could it do to try it.  £6.50 later (better be bloody worth it) I started my daily practice of giving Daisy one tablespoon of the ridiculously messy gloop onto bread every morning……..it was great ‘cos I could even use it as a medication trap (her anti epilepsy sprinkles couldn’t escape the honey).  I’ll cut to the chase, it actually worked, really, no joke…….ok, so she still had one hay fever tablet occasionally – disguised in an Oreo, but yes, it actually worked.  I only had to rely on the antihistamine if she went ‘out of town’, those bee’s must really be homies!

Daisy started her new course this week, it will continue until roughly the end of June.

So, take it from me, if you have a child who thinks scratching their eye from the inside is a good idea, try local honey…..if it doesn’t work, stick it on your parsnips, if it does, thank me later!

p.s. don’t give to babies under 12 months……..not a good idea.

Is it still only week one?

Is it me or are the Easter holidays just the most horrid weeks of the year?  I feel so bloody irritated by everyone and I think it’s because I hate these two weeks.

Daisy has been sleeping well, she appears happy, she’s healthy, so why am I so unhappy? OK so my husband is home and drives me potty at times but this Easter he’s actually come in useful (not often I say that) as I’m using him to care for Daisy when I’m in work but then when I come home, due to my OCD I can’t bear the mess……….I should be appreciative but no, not me, I moan and get even more irritated.  He doesn’t keep the house as tidy as I would, he leaves crumbs everywhere, ‘stuff’ everywhere, his work is strewn over every surface, I just feel overwhelmed by mess.

I think the problem lies with the fact that I can’t think what to do with Daisy for two weeks………she can’t do what other children can do – go to the cinema, go bowling, ride a bike, go to activity clubs, go swimming (unless there is no one else in pool and it’s heated to the temperature of a bath), go for a nice leisurely lunch, go shopping…….you get my drift!  I get it that other parents struggle to entertain their kids in school holidays but with a child like Daisy it is compounded 100 times as she doesn’t even have friends, not a single friend,  she doesn’t know how to play, so I can’t even have children round to socialise.  She can’t read a book, hold a pen, do a jigsaw, finger paint – she can’t do anything!

I can’t tell her like my mum used to say to me endlessly “go out and play”, it’s just not an option, so I feel anxiety over how to get through these two weeks .  It’s not a time for family for us, we are alone, it’s just a time of getting through each day and counting down the hours.  It’s bloody suffocating.

So, it’s halfway through week one, still a long way to go;  I’m wishing my life away and just hoping Daisy remains happy for the next week and a half………it’s a long shot I know but maybe just maybe she will remain happy………….. at least that will be one of us.

Coffee and Sunshine

Yesterday Daisy was an angel.  Compliant, happy, calm.

Taking advantage of her mood and the sunshine we armed ourselves with supplies of crisps, biscuits, her drink, spare nappy, spare leggings, wipes, iPad, iPod, a book and her Fimbles and ventured out to share her with the world (well Cardiff Bay to be precise) and the inevitable staring eyes. She sat like a princess in her wheelchair, Nick did the pushing (and moaning) as she is heavy to manoeuver around crowds, he removed her dummy as soon as she was on parade, it really bothers him that she uses one and I agree it does look ridiculous, but he doesn’t manage her 24/7 like I do and it is her comfort and  is great to dangle in her face a bit like a ‘carrot in front of a donkey’ if you need to get her to move.

We have become pretty immune to the stares and giggles that always accompany a walk with Roo.  We do get the sympathetic ‘head to the side’ looks as well but not as many as the ignorant glares.  Many a time have I ‘lost it’ with people but nowadays I have to accept that Daisy is not a normal member of society and that however unfortunate it is, we do not fit in this ‘normal’ world.

We couldn’t stop at our usual Starbucks…………..other coffee shops are available, as it was standing room only and that is not an option for us; we need military planning – tables need to be strategically placed in a corner so that Daisy can be trapped, chairs are used as a blocking tool, distractions are offered to our princess, we can’t sit where she can grab at people……..one of her favourite pastimes, all cups are placed on the floor as you never know when a kick to the underside of the table will ensure your cup of coffee will be dripping into your handbag; so, as there was no room, we continued on our loop of the Bay and returned to the car as thirsty as when we left it.

Some years ago, again at Starbucks, again on a busy sunny day, I foolishly asked two young lads if I could join their table as it was the only one with a spare seat…….Nick could stand I thought!  Anyhow, they ‘sort of’ nodded in a ‘are you taking the piss’ sort of way, so I sat anyway, I needed coffee.  I was a little aware that groups of youngsters were staring and assumed it was at Daisy as it always is.  Nick arrived with the coffees, Daisy was in her wheelchair, Nick placed freshly brewed coffee onto table, Daisy kicked table, iPhone of the ‘rather blinged up’ guy became a victim as did his VERY white and gold Versace kicks (cool aren’t I?).  Of course, I got the blame from Nick.  Always my fault.  Why did I put my coffee on the table? Why did I sit Daisy so close to the table?……..where was I supposed to put her in the high street?’. Why, and this is crucial, did I choose to sit next to TWO premier league football stars?  Well, hows a girl to know?

Nick did offer to pay for the phone but thankfully blinged up guy just wanted to leave, and leave quickly he did, signing autographs as he left with his grubby shoes!……..ah well, he earned plenty of money and coffee only stains a bit!

I learnt some valuable lessons that day, the most important being that I should never assume everyone is staring at Daisy, they are not………there could be a famous football player (or Hollywood megastar…..story to follow when suitable) sitting in the wings.

Twitter Troll

Well I don’t really have much to write tonight as Daisy was causing grief in respite last night (and this morning) so I’ve only had the pleasure of her company since 3.45pm. I have to say though she seems nice and calm and happy to be home. I’ve had a couple of ‘wheeee’s and ‘LaLa’s” so she’s even found her voice a little. All chores have gone to plan, she ate all her tea, enjoyed her bath, let me oil and brush/plait her hair and is now ready for her evening medication and snoozes.

So, I’ll use tonights post to address the lovely kind thoughtful lady who direct messaged me on Twitter,  correctly telling me that I don’t deserve such a special child and that I will go to Hell! Crickey Moses! Hell!

Dear Lovely Kindhearted Lady,

Please, please message me again. I will supply you with one weeks clothing, nappies, food and medication, all the toys you could wish for and one delightful little Daisy. Any funding you require can also be arranged. You can collect Daisy – actually I’ll drop her to you – at 6am on Monday morning (start of school holidays). You sound amazing and I’m sooo looking forward to meeting you.  

Unfortunately, I’m also pretty confident you’ll  be begging me within a day (or if she’s in a good mood, a day and a half) to take her back. I do however still think it’s an excellent idea for you to be the mother Daisy deserves and give it a go! So, like I say, please contact me again, I’ll unblock you!

Here’s hoping

Annie x

Wish me luck!