2013 kicked off with the realisation that several family members were complete and utter wankers. I thought long and hard about sharing the posts on this subject, but I decided to go ahead. One because it happened so its part of the journey Im trying to share, but secondly because I have since learnt this is far from rare. Multiple people have since told me that arsehole comments from family in times of need are common. A sad but inevitable realisation for me and so many others in similar situations is that a bereavement, severe illness or disability of a child or loved one, brings out true characters as quick as colonic irrigation can wash out a nasty bowel blockage. So Im sharing as a nod to everyone whose been there. You are not alone.
Georges glove fetish escalated, we moved to Australia, Alices legs finally came down to earth and she began to crawl.
1st January 2013
Time to get healthy so this morning I step on the scales not realising George was lurking behind me and heard me gasp "Oh crap" when I saw the numbers.
George: Whats wrong Mummy?
Me: Oh nothing George, Mummies just getting a bit fat thats all.
George: Fat like Daddy?
Me: I love you.
5th January 2013
Would like to publically apologise to my 3 year old for ignoring the height and age restrictions on the jumbo hydroslide at the swimming pool, and telling him what a great idea it would be to go down it on Mummies lap. I would further like to apologise for then losing my balance at the top and falling face first into said hydroslide whilst holding my terrified three year olds hand and dragging him in after me. Despite falling backwards, upside down and basically arse over elbow all the way to the bottom, while I spun like a beetle in a toilet bowl, he managed to simply look terrified and not utter a word. Upon emerging at the bottom with a mouth full of water and a bump on his head I would like to congratulate George on not crying but simply looking a bit stunned. Finally after many many apologies from me I want to praise George for telling me it was Ok as he knew it was an "acc-a-dent". He did however point out it wouldn't have happened with Daddy and I shouldn't do it "ever ever again".
11th January 2013
As this journey goes on it seems family (not blood family) really can be arseholes.
I won't go into the stupid, hurtful, poorly informed and frankly ridiculous things that have been said in the last day or two about me on Facebook, but none have come from anyone with children or anyone with life experience. Why do I care? Because I am emotionally and physically destroyed by the last year and what lies ahead of us, but no one would know that because its the stuff I choose not to post. In fact there is a lot of stuff I don't post. It may look like a bare my soul, but I don't, I sugar coat it.
I will be cutting back on Facebook until we have relocated in Perth in March as it is affecting my ability to parent. However there are somethings I really feel I need to clear up as whilst I know it shouldn't, it does matter to me greatly what people think of me. The apparently despicable piece of discipline that made a family member want to "vomit" and see fit to put on her Facebook page as it was so terrible, is that we fitted a latch on Georges door to keep him in there for his 3 minutes time out. He is much harder work than I ever let on and we have many concerns with him too. This again is something we have shared with no one, not even family. This time out is done, for kicking, hitting or throwing. I know I don't have to justify myself but a family member has made such a deal of this I am worried what people must think I do. Secondly mine and Gregs siblings have NEVER been told not to have kids as they will "most likely" have NKH and that any children they have will die. It is a lie and used to gain sympathy. Sadly some family members are enjoying riding our wave of public sympathy just a little too much.
Finally to the spotty, greasy haired cousin in law who saw fit to inbox me and tell me babies dying arnt that upsetting and told me in his infinite wisdom, that I post about Alice only to gain sympathy, shame on you, you little turd. I hope your expanded earlobes get infected and fall off! thank you for listening.
16th January 2013
Todays X rays were very traumatic but confirmed Alice is unlikely to need hip surgery thank God. Today was also multiple blood tests. Horrific is the only word for the fear and pain it causes Alice. It takes over 5 mins to fill 3 viles of blood and myself and two nurses to pin her still enough. Unless it is essential I am refusing to have it done again. The seizures from Monday seem to have stayed away so far. I love my brave brave girl so much and I am already feeling the need to tell the world about her agai and say "fuck you" to the haters. Thank you everyone for the support when I really needed it. Some long called for changes are being made xxx
17th January 2013
Today at 8am on the way to daycare.
George: Mummy will Alice ever get bigger? (He means will she do more, play, walk etc).
Me: Eeeerm I hope so honey, maybe.
George: Do you think she will stop wriggling so I could cuddle her one day?
How do you deal with that one?
24th January 2013
So after a very unsettled week with Alice, all is definitely not well in her little world. We had been lucky enough to have a three month reprieve on her night time madness but the Crazy Train clearly added us back onto its 2am timetable. She was up behaving like a mad woman most of Tuesday night, then last night she slept, but its now 2.15am on Friday morning and we are about half an hour in to our latest episode. These crazy sessions used to make me laugh (if you didnt you'd cry) but this time its just proving we are going backwards at the moment. Suddenly she cant/wont sit up any more, she is crying most of her days, something is making her muscles tense up and she thrashes about and hits out if you try to hold her. Fingers crossed this is all something simple like her last 4 big teeth and we are not due for another hospital stay and a fruitless battle with ignorant and frustratingly closed minded doctors.
25th January 2013
Today is no better. In fact non stop screaming from the moment she has woken, muscle spasms, mad look in her eyes and generally not a happy bunny at all. Doctors have fitted us in at 11.30am to rule out UTI, ear infection, possible bowel obstruction etc. If that shows up nothing its back to the drawing board or waiting for some other symptoms to arise. My heart is telling me its a tummy or a teeth issue but anything can happen with these kids in a very short space of time. Haven't even bothered contacting Alices specialist as I cant be doing with the usual, "its her condition, this is what happens" bollocks. Feeling increasingly on my own with this damn condition.Anyway fingers crossed its something easily treated like a minor infection or a stuck poo!
26th January 2013
So the upshot is this. No UTI but something a bit shonky in her sample so off to the lab (I have antibiotics on standby if her temp goes up over the weekend) ears, lungs and throat OK. Tummy soft but me and the doctor tend to think its something going on with tummy pain made worse by last few big teeth. Have upped SB a wee bit to help with raised glycine (I can tell as she looks a bit mental lately). Movicol starting tonight to see if it helps with her tummy for a bit. Other than that gotta sit and wait. Should add though that endless screaming has now stopped and a poo baby was welcomed to the world at approx 11.10am this morning. Both Alice and poo baby are doing well.
27th January 2013
Don't know what I am happier about. The fact that it is yet another stunning day without a cloud in the sky or the fact that Alice passed a relatively soft poo for the first time in months. Go ahead take the piss, moan about how I talk about poo and my kids too much, I dont care. A soft poo is like a lotto win in this house. Sunshine and soft poo......all is well in the world today.
29th January 2013
Some days you're the windscreen. Some days you're the bug. Today I was the bug.
30th January 2012
So this morning we had the usual "When will Alice stop wriggling and kicking so I can cuddle her"?
I explained that it may never happen and we will have to find a way round it. I told George that he needs to understand that although she loves him, she is different from other children and always will be. I asked him if he understood.
George looks at me like I'm a bit dim and says "Yes Mummy. Thats why other babies are called Babies and she is called Alice". With that he ran off to find his remote control dinosaur.
31st January 2013
Just realised we move out of the house in exactly 4 weeks. that means we move to Oz in 4 weeks and 3 days.
1st February 2013
Discussion whilst holding George:
Me: George, how would you feel if our new house had a swimming pool in the garden?!!! That would be cool wouldn't it?
George: Will it have a slide?
Me: Eeerm no.
George: Will it have waves?
Me: Eeerm no.
George: Will it have bubbles?
Me: Nope.
George: Hmmmm. Me not want a swimming pool.
Bloody kid doesn't know he's born!!!!!!
2nd February 2013
I know I quote George a lot lately but this was so beautiful.
George : Look Mummy Alice has stopped wriggling!!!! Now I can cuddle her.
Me : Well she wont have stopped I'm afraid but she may just be having a rest.
George : Can I cuddle her?
Me : Of course you can Honey but dont get upset if she hits you by mistake.
George : (Looks very thoughtful and considers his options). I shall be very quick!!!
With that he threw his arms round her waist and put his head on her tummy and said "Thank you Alice" and leapt back to a safe distance.
3rd February 2013
Been hoping to post this for a while and think I can now safely say its not a one off. It seems Alice can commando crawl backwards! Nothing flash and not something you would even mention for a healthy child but she gets up on straight arms pulls her legs up her sides and pushes herself back then does it again. Total distance covered so far is about 4 feet but that is about 15 miles in NKH distance. Like I said before, unlike a normal child this wont be the beginning and in a few days he will be off. This will be one of hundreds of micro steps towards crawling and there is every possibility it will never progress to crawling (last months she was sitting unaided, now she cant) but right now its a victory.
7th February 2013
Have to say I am enjoying the seclusion and sanity of my Facebook page since my recent culling. If you can see this congratulations you made the cut and have been deemed "not a fuckwit".
8th February 2013
I wonder if a day will ever come when I can look at little girls playing, running etc or siblings holding hands and not feel like I have suddenly been kicked in the solar plexus by a donkey and had all the happiness sucked from me by some large invisible syringe. Considering it gets worse with every passing day I suspect the answer is a big fat "No".
14th February 2013
So that was an interesting start to the day. Just gone 5am and Alices apnoea monitor starts alarming (in short she has stopped breathing), so without my feet touching the ground I managed to fly to her room, burst through the doors like a super hero and seconds before diving on her I realise she is sleeping soundly but has rolled so far up one end of her cot, the sensors simply cant detect her. Naturally I was rather relieved but at the same time I wasn't too chuffed with the fact it was only 5am, I had now been sick in my mouth, I am fairly sure I suffered a mini stroke and think my heart had gone into some sort of spasm. Greg however hadn't moved a muscle by the time I got back to bad having aged 15 years.
19th February 2013
So we are now almost into our last week in the house before we pack up for Oz. This morning we said good by to Alices GP's and all the great staff at our medical centre. I gave the doctor a hug who was the first person to take me seriously about Alice and get us referred to a specialist. Then we said goodbye to our wonderful pharmacist and all the staff in their who know us on first name terms and ALWAYS ask about Alice and George and yesterday we had our last visit to the community hospital and as always all the staff coo'd over Alice and told me how beautiful she is etc. I know I moan about the specialists here and the doctors at the top of the food chain being negative, unsupportive fuckwits, but I can honestly say the care, consideration and genuine interest from all medical staff at the lower levels from receptionists to nurses, from the cleaners on the ward to GPs, from ambulance staff to pharmacists, from doctors to physios and many more has just been outstanding and I will be eternally grateful.
Finally thank you to my amazing work collegues who without question allowed George to play out his rubber glove fetish with them. He really was like a pig in shit.
23rd February 2013
Gregs leaving drinks with his work last night were clearly a roaring success. This morning he is on the sofa dying from the effects of beer, shots and not eating dinner. George is driving a digger over him calling him a "girl" and a "Princess". Happy days.
25th February 2013
Into our last 4 days in the house. Suddenly it seems very real and the implications of two 5 hours flights (the first meaning at 3am start) with two kids, one with high medical and special needs, one husband, 10 suitcases, one 10kg medicine and supplies bag, 4 hand luggages, one buggy, 2 car seats, one high chair, one disability walker, a large foam play mat and 2 laptops is sinking in.
27th February 2013
Its 9.30pm and the house is virtually packed up. We are drinking wine from plastic cups, George is asleep in our bed, suitcases are piled up and the enormity of what we are about to do is dawning.
Internet is being disconnected in the next hour so things will go quiet for a bit. We are however in a hotel for the next few days in town so I assume we will have wi fi there and I can use my laptop. Think of us tomorrow for the big move.
28th February 2013
3.40am and Alice still barking at the moon. She had decided to board the Night Crazy Train for the first time in months. Excellent timing as Greg has work in 4 hours, George will be awake in 3 hours and we are all in a hotel room together. I off to eat glass to cheer myself up.
1st March 2013
Day two in the hotel and everyone but me now has stinking colds. Poor Alice is all full of snot and very weak. Every time she sits she falls flat on her face so has banged her head a few times and lets face it the last thing Alice needs is a few bangs to the head! George is grumpy and has an attention span of 5 minutes before he resorts to throwing something at me or refusing to talk and only roaring. I went to be bed at 6pm last night so I have my game face back on after a day of lip quivering and almost tears at any given moment.
2nd March 2013
Slightly better day than Friday. Apart from being snotty and grumpy Alice doesnt seem to be handling her cold too badly. Today she has started picking up a comb in an attempt to brush her own hair. Its about as graceful as a chimp with a cricket bat and involves a lot of sawing actions across her head and ears, but the point its she knows its a comb and what she is ment to do with it. She's no Vidal Sassoon but she's trying. Took George swimming at the hotel pool today for some much needed Mummy and George time. He refused to leave the hot tub and I wanted to swim in the pool. So after hearing me complaining that it was a bit cold he got a plastic drinking cup and tipped cup after cup of hot tub water into the pool saying "there you go Mummy, I've made it warm for you". This morning I took him to look at trains (dont laugh, he loves them) and true to Kiwi kindness a Platform Manager came over, introduced himself as "Wellingtons Fat Controller" and asked if George wanted to help him with the trains. He got to close the emergency doors and then we both got in the cab and beeped the horn. We are going back at 9am tomorrow and me and George are riding the train to Johnsonville in the cab with the driver. Kiwis are fucking awesome people. What with that and seeing two helicopters take off today, he is a happy bunny.
3rd March 2013
Train ride with George this morning was fantastic. We got to sit next to the driver, beep the horn, went through five tunnels and three level crossings. George was so well behaved and even got a free chocolate biscuit from the guy at the station coffee shop. Only slight disaster was that Mr Snake who boarded the train with us was nowhere to be seen when we departed. Thankfully George was too excited to notice and after an emergency dash across town I have replaced Mr Snake with a clone and George is none the wiser that his good friend is somewhere on the Johnsonville line riding the trains for the rest of his days. Will try to one last update before we pack up and leave the hotel at 3.30am. Despite the stress and cramped living conditions, these last few days in a hotel have really been worth it. No work, no daycare, just family and fun stuff. Not convinced Greg agrees at this stage though.
11pm
Too busy for a last update, so will just say wish us well and if anyone reading this is on Qantas flights tomorrow from Wellington/Sydney and Sydney/Perth, I apologise now for my children and if I swear at you, you probably deserved it.
4th March 2013
So we are here and we made it in one piece. First flight was surprisingly OK, both kids were shattered from the 3am start so slept for most of it. Catching our connecting flight was hilarious, with 3 Qantas staff and me and Greg all pushing trollies loaded with cases and me pushing Alice and dragging George along who wanted to stop and look at everything. Second flight out of Sydney was not so good. Alices sedation lasted 1 hour then she just screamed and squealed for the remaining three. George decided he didnt want much to do with Daddy and I couldn't leave Alice as she went bananas everytime I left her side. As such George was frankly a bit of a shite and drove us all mad (whats worse you cant use your screamy threatening voice on an aeroplane, nor can you lock them in their room till they stopping hitting you!). Anyway we got there with all our luggage except Georges car seat which we forgot to collect in Sydney, Alice did very well considering, we got to our friends in Perth for about 2pm Oz time (about 18 hours after we got up). Will update more is we go but it is currently organised chaos until we move into our 6 week rental at the weekend. That said, we are here, we are safe, no disaters (yet), its bloody hot the kids think its all a great laugh.
5th March 2013
Good news and bad news. Good news is Alice has just pulled herself to standing for the first time. Bad news is I bent in for a kiss and it was my hair she used as leverage to pull herself up. It was like being attacked by a small blonde chimp and I now have a banging headache. I was half expecting her to rip my face off and eat my fingers at the same time. Anyway after her onslaught she promptly face planted onto her mat but the fact is she knows what she needs to do to stand and she did it. Right I off to reward her with a banana and clean up the poo she has slung at me.
Disclaimer: For the benefit of those not familiar with sarcasm that last bit is not true and is simply a reference to chimplike behaviour. Apart from anything else Alice cant eat.
6th March 2013
Things are falling into place. We have cell phones, a bank account, in about 3 hours we'll have a car, Georges car seat finally made it here last night and we move into our own place in 4 days. Friday we get to meet Alices new medical team and start getting some plans in place for her care, physio and to try and get some weight on her. George seems to love "Oss-tray-ler" and has been so well behaved we are off to Toys R Us later today. Oh and this is something only Brits living in NZ will get but there is an IKEA here! A bloody great big one too. Oh first world shopping how I have missed thee.
7th March 2013
Well Gregs gonna have to get a good job and fast as first impressions suggest I have a lot of shopping to catch up on. Its like I have woken from a 6 year shopping coma. Sorry New Zealand but if it helps the coffee here is shite.
8th Match 2013
Met Alices new metabolic doctor today and she was awesome. She dealt with 11 cases in Malaysia, several in Sydney and one a few months back here in Perth, she clearly knows her stuff. She is referring us to a neurologist, dietician, physiotherapist, occupational therapist, speech therapist, social worker and a general paediatrician as well as still seeing her as the metabolic specialist. We didnt have half of theses people on board in NZ despite me asking on a number of occasions. We discussed drugs which she thinks should be lowered and some that she thinks should be raised. I didn't agree with it all but its finally being explained to me in a manner that makes it clear so I at least understand her thinking. Plus I am not getting "huffed" at for questioning her ideas and she seems extremely hopeful about Alice and what she will achieve. Loads of other stuff but too much to mention but I am feeling very happy and a lot less stressed about future care for Alice.
12th March 2013
So it took 9 days but George has realised I didnt bring his vast selection of rubber gloves with us. He took it quite well but was mildly disappointed to know it will be about 4 more weeks before they get here with the shipping. I have agreed to get him a couple of interim pairs and he has requested a red and an orange pair to get him through his glove drought. I love my boy.
16th March 2013
So yesterday we took George to the supermarket to pick himself out a new pair of rubber gloves. After much serious thought we went for a green pair with a smooth silver inner. He has not owned a green pair before and was very pleased to obtain a new colour for his collection. He desperately wanted them straight away but we compromised on him holding the packet until we had paid. As we left the shop and walked out into the mall, George pleaded that he wear them to the car. So there in front of hundreds of people I placed two adult green rubber gloves on my 3 year old sons hands. Greg had walked off crippled with embarrassment by this point and just when I thought it couldn't get any worse, George says at the top of his voice "Ooh Wow! Thank you Mummy its so good to have these back. They feel lovely". Australia.....welcome to my son.
20th March 2013
First visit into the actual chilrens hospital today rather than just outpatients. It hadnt occurred to me that I had never been to a childrens hospital before, only a childrens ward. If anyone ever needs a good dose or reality and a reminder of just how minor most of our troubles are, a good walk round a childrens hospital will set you right. Kids with no hair and walking around happily with drip s in their arms, 13 year old boys laughing on their cell phones with one leg clearly having just been amputated, 10 year olds in wheelchairs moaning to their Mums because they arnt pushing fast enough and hearing the Mum explain he is only grumpy because its his second kidney transplant in a year, walking past the entrance to the serious burns unit and so much more. I still wonder how on earth I ended up here (man my life was different not so long ago) but there are a lot more of us than even I realised. Parents of these kids, me included, moan about what we deal with and we suffer from stress and depression and all sorts of crap but today I got a big dose of how its not actually about the parents, we are just spectators.
22nd March 2013
Further evidence of the fuckwittedness of Alices old specialist back in New Zealand. Way back in September me and Greg had our bloods done for genetic testing to trace the mutations back up the blood line. By February we hadnt heard anything so I mailed Dr Fuckwit and chased. He ignored my mail. I had too much on with the move so chased again this week. Today I get a mail that basically says that the lab they use in the USA wont test none US residents now for legal reasons. Thats it! Not what they intend to do, no explanation why no one told us, no apology, no details of how we can get it done, nothing. Sometimes I am amazed Alice survived as long as she did in his care and how I never put my hands round his neck. Guess Ill ask our new doctor to start the process again.
23rd March 2013
This is really one of those "you had to be there" moments but hopefully it will translate even half as funny as it actually was.
So today we went to Hillarys Harbour. When I backpacked her 13 years ago it was a lovely upmarket harbour, with a few restaurants and bars and a little cove of a beach but in the decade since I have been there, it has turned into a vile Brits abroad Southern Spain type resort with a fun fair, water park. Its over run with fat, sunburnt kids and their parents who wear animal print and lots of gold, because thats classy, right?
Anyway as we walk along the beach which is bursting people and inflatables, George screams at the top of his voice
"SHARK!!!! Daddy a SHARK, its HUGE Daddy, look a SHARK"!!!!!!!!
Man alive a lot of people looked and just about everyone in the water must have felt their rectums clench. The whole beach stopped and looked at us.
Turns out George had spotted a shark shaped slide at the adjoining fun fair.
Once again Id like to say "Australia, welcome to George".
25th March 2013
Alices first Occupational Therapy assessment today and wow did she do me proud. She did all sorts of things I had no idea she could like guessing correctly which hand things were hidden in, knocking over the right pot with a ball hidden under it, playing basic turn taking games and bunny hopping and pulling herself up over and over again. As always its all very cackhanded and Alices own way of doing things but she is doing them and and she giggled and looked for approval after each one. Love her love her love her.
26th March 2013
Well if Alice didn't look like she had escaped from an asylum before, she sure does now. After two weeks in a travel cot with mesh sides, she has successfully managed to rub and snap off all the hair on one side of her head. So we now have mad knotted afro curls at the back, enormous Phil Spector type bouffant on top, a straight fringe and what looks like alopecia on the left side of her head. Is it too much to ask to have her at least look normal?
30th March 2013
So we have been here almost three weeks and so far it seems like absolutely the best decision.
We have decided to settle about 45 mins south of Perth so we can live right on the beach and get a bit more house for our money. I have worn shorts every day since I have been here, we have managed to get to the beach at some point most days, George is fast going blonder and screams "sunny day"!!! each morning. Alice is now babbling like a "normal" baby and her sounds have changed completely from the funny NKH type squeals to proper "goo goo ga ga". She chatters to herself so much that some days its like living with a gremlin.
31st March 2013
Approximately 50% of children born with NKH survive more than a year. Approximately 20% of those will walk to some degree, but it is estimated that less than 10% will talk and only a few percent will have what we would refer to as normal speech. As such, of all the things I hope Alice will achieve I have never really given much time to ever even consider she would have some words let alone talk. Well I am over the moon to be able to say we have our first word. A proper word, said in context and repeated when you ask her to. Needless to say Greg did a bit of sobbing tonight. So pleased for Alice and so pleased that the unsung hero of the last 18 months, got to hear words he never ever thought he'd hear from his daughter "Da Da".
6th April 2013
Off to IKEA. Not because we are going to buy anything but because we can!!!!
5pm
So today we are in IKEA and George needs the loo. Greg has Alice so off we go to the Ladies. Me and George are both in a cubicle doing what needs to be done and a woman in the next cubicle lets rip, I assume by accident.
George (squealing with excitement at the top of his voice) : MUMMY, MUMMY!!! That lady made a BIG fart!!!
Me (whispering) : Ssssssh Honey, I know she did but we'll talk later.
George (full volume): But why are you whispering? Mummy? MUMMY TALK TO ME! That lady made air with her bottom, its funny!!! It went like this......Paaaaarp!!!
Me (head in hands muttering): Why? Why does this happen to me?
This was followed by the lady in the next cubicle hurriedly exiting and me making all sorts of excuses to delay us walking out until she was long gone.
9th April 2013
Off to his first day at Kindy in his new country. So proud off my boy, he didnt cry when I left him there, he just looked mildly stunned!
I did however buy a very nice meds trolly. Well Im sure thats
not what IKEA intended it to be used for but hey ho.
15th April 2013
After an entire day of dressing George and him stripping off 5 minutes later, I discovered what can only be described as brown nugget, by the back door.
Me : George, you wanna come and tell me what this is on the floor?
George: Eeeerm a poo?
Me : Yep its a poo alright. Do you know who did it?
George : A dinosaur.
Me : Its very small for a dinosaur.
George : A baby dinosaur?
Me : Do you think maybe its yours?
George : It just fell out!!!
23rd April 2013
Just an observation but if I was a mouse, I think I'd slap Angelina Ballerina.
29th April 2013
George said to me today:
"Mummy, my dinosaur breaths fire and roars. You must never put your hand near his mouth or it will burn and your skin will come off and you will get ulcers and your fingers will break".
Later today I hear him in the back of the car say to Alice:
"Alice my dinosaur breaths fire and roars, put your hand near his mouth".
1st May 2013
Mortgage approved, house sale is going ahead. We had till 4pm today before we were out of contract so I was feeling pretty sick. We should be out of our dodgy rental and into our own home in 3-4 weeks. I feel some soft furnishing shopping coming on.
4th May 2013
For anyone wanting to experience dealing with an un potty trained, special needs toddler with a dodgy tummy, without going to the trouble of actually having one, try this handy tip:
Simply place a large squid (12kg is good) into a travel cot. Fill travel cot with a bucket of poo (the poo must be laced with at least 500ml of medicines of some sort and left to ferment for 24 hours before use). Ensure both squid and cot are fully covered and leave for 1 hour while you let them take a nap. Re enter room, inhale deeply, gag and then attempt to lift squid without, causing more mess and at the same time prevent squid from putting poo covered tentacles in its mouth. Then single handedly remove your clothing, undress the squid (your squid should be in pyjamas). You now need to shower and clean the squid whilst holding it securely with one hand (you are in a house with no bath), de poo both yourself and squid, redress squid, throw away bedding, hand wash "dolly" and "Lola" who were in the bed at the time, place cot in garden and spray with hose. Look in the fridge for alcohol, realise there is none there and its 11.30am, cry. Finally remember you also have a 3 year old and go to look for him. He should be going through the poo laced bedding you have disposed of. Cry some more.
9th May 2013
Finally confirmation that my transformation into sad ass special needs mum is complete. Not content with squealing out load when we got our Aussie Disabled Badge this week, I have now shed a teeny tear on opening a letter to say Alice has an appointment with a neurologist. Not only have I been asking for a neurology appointment for well over a year in NZ and got nowhere but this doctor is a movement disorder specialist. Its not till June but I can finally talk to someone about getting her off her sedatives without risking seizures and without being huffed at or having eyes rolled at me. This move has wiped out a lot more funds than we ever anticipated and will continue to do so but Alices chances of the best life possible have pretty much doubled.
10th May 2013
George: When does your birthday begin Mummy?
Me : Its all day George, it began when we woke up.
George: Well why arn't you wearing a hat then?
14th May 2013
First attempt at getting Alice trying back on formula to see if there is one she can tolerate = Epic fail.
16th May 2013
6.15am a face appears by my bed.
George: Mummy I just farted.
Me : Thats nice dear, can you go back to bed?
George: No, it was loud, it woke me up.
And with that, my day began.
19th May 2013
Alice cant walk, talk, eat, drink or even effectively crawl. She has no fine motor skills, cannot control her bodys movements very well and is as graceful as I am after two bottles of wine and a few naughty G&T's. And yet with one swift move and only minimal key pad touches she can completely reprogram my laptop to Arabic. F*cking genius my daughter.
21st May 2013
Exchange for house put forward a day to tomorrow at 3pm and moving in date brought forward to Thursday! Goodbye shitty cramped rental and living out of suitcases and hellooooooo gorgeous new home and a container load of belongings.
24th May 2013
Still unpacking the many many boxes I say to George:
Me : Come on then, have a guess what will be in this one.
George: A car!!! A really big toy car for me to drive.
Me : What car? You don't own a big toy car. You do know it has to be something we packed at the old house right?
George: So it won't be a car? I thought they were presents".
And with that he sulked off to his room and left me to unpack alone.
25th May 2013
2002. Me : I hate white kitchens, its such a shite to clean. Honey, if I ever want a white kitchen again, shoot me.
September 2007. Me : Oh white, I love white kitchens! Can we have the white one, it will look beautiful.
November 2007. Me : A white kitchen!! What was I bloody thinking? Why didnt you stop me? Never again, I swear.
April 2013. Me : Please, please can we have the house? I love it. I love everything about it.
Today. Me : What!!! The kitchen is white! How the hell did that slip past me? Dammit, how can this keep happening????
30th May 2013
Hurrah!! We have a new fear to add to Georges endless list of fears. After trying to get comfy on his training toilet seat the other day ended with him quite literally falling down the pan (picture a 3 year old wedged in the toilet with legs in the air, screaming "Mummy help meeeeeee") he now has a fear of toilets. After 5 attempts at doing what needs to be done tonight it is apparent he has stage fright and as George puts it "the poo is stuck and doesnt want to come out". So he is tucked up in bed with tummy ache and I have had to promise him that his poo will come out in the morning. No one prepares you for this stuff do they?
3rd June 2013
It is now looking entirely possible that after 3 long years I may just get to experience seeing a child of mine crawling round my house one last time. NKH kids take a while to get things and to be able to do it consistently, so even though we are so close it could still be weeks before she's properly off, but today I just know it is something I WILL get to experience. Watch this space.
4th June 2013
Alice is semi mobile and destroying my house and I couldnt be happier.
5th June 2013
Well its official, we have lift off. I am beyond proud to announce Alice is crawling. Not normal crawling but Alice/NKH crawling. Think slightly drunk child who keeps stopping to appluad herself.
9th June 2013
Am important milestone in Georges passage to manhood today. His Mummy bought him his first Whoopy Cushion. I was so proud and he took to it like a natural.
13th June 2013
Just submitted our application for George Primary School. I dont know where the time went. My stiches have barely healed and I'm enrolling him in school.
15th June 2013
8 months after I shaved my head it is seeming like an increasingly fucking stupid thing to have done.
16th June 2013
Why does Poo-magedon, poo-canos, poo-unamis, poo-quakes and poo-nados only ever happen on my bloody shift?
20th June 2013
Off to do a tour of a Catholic School we are hoping to get George into. No we arn't Catholic (we are painfully atheist) but its apparently the best way to ensure Georges gets a decent education in this country. Typically Alice hasnt exploded for a few days so I know its imminent. Please God don't let her blow when we are meeting the Principle or worse still Father Gavin. Oh the shame.
24th June 2013
Alice has crawled (carpet humped) her way into Georges room and he is proudly talking her through his extensive rubber glove collection. I am beaming with pride at the pair of them.
26th June 2013
Off for the interview with the Principle of the school that we hope to get George accepted for this afternoon. List of instructions for George have been discussed as follows:
Do not fart.
If you do fart say "Pardom Me" not "MUMMY I farted, how cool is that"?
Do not say "I am a little bit weird" if they ask how you are.
Do not refer to Alice as a "nut bag".
Do not ask to be nudey.
Do not attempt to get nudey.
Do not get angry if I say you cant be nudey.
Do not say "Mummy needs alcohol" at any point.
There are many more but I think if I can prevent the above we might be ok. He has been promised ice cream if he complies with all of the above..
4pm
Well it seems my instructions scared George into complete silence and he barely uttered a word the whole time. Except of course to say very loudly as we left "Do I get an ice cream now"? Anyway we got offered a place so that is a huge weight off my mind. He wont start until Feb and its only three days a week till he goes to up Pre Primary, but we are in.