It was the 5th of February, 2014. I jumped up from the bed screaming "what do you mean it broke? Aaaaaaaaaaaah" I didn't want another baby, there was no way in hell I was going through any of that again. Thanks. Very. Much. Not long after, I drove to the chemist with every intention of buying the morning after pill. I found myself lingering in the baby aisle, and then the pregnancy test aisle. I never made it to the counter, I just lingered around with my hand instinctively hovered over my belly, wondering what if? I stood in the Manor Lakes pharmacy for a good 20 minutes before I decided to leave things in the hands of fate. I couldn't see any good reason why I should become a mother again, only a million reasons why I shouldn't. But I walked away and for the next few weeks, I waited.....

Silvie Lena Valentine is now 8 weeks old and Christmas is only a few days away. She was born on the 23rd of October and this time around, I have some perfect memories from that day. Max is besotted by her and he calls her 'Shil-vee Yeena' or 'Baby Yeena'. Silvie looks nothing like her brother did at this age. He was bald and blonde, whilst she has a head full of fluffy brown hair. Even at this young age, her temperament seems calmer then his (famous last words!). She is absolutely beautiful.



Just hours old

The last 8 weeks have been every bit as tough as I imagined they'd be. And then a little more. I'm slowly getting used to having 2 children, but there are many days when I feel utterly broken. Some nights, Silvie wakes up a gazillion times and then Max starts the day with full force at 5am. When Max goes down for a nap, Silvie won't sleep until he has woken up (cheers kiddo). She spends hours in the early evening just being angry and inconsolable in general. I close my eyes when both kids are finally sleeping but Silvie usually wakes 2 or 3 more times before she finally sleeps. Those are the days I cry and moan that I'm never going to sleep again. Because I'm a total moron when I haven't slept. I wish I wasn't.

I didn't expect my mood to get so low during this time, because I felt great after I had Max. But it has. It's absolutely no reflection on how much I love my daughter. I adore her and I adore her brother but I'm drowning. I feel like I'm not exactly winning at this motherhood business right now.

On a lighter note, the increase in poop production, still blows my mind. Some days I swear Max has tripled his poop load so he can keep up with his sister. Silvie screams like a possessed baby when she's dirty but Max doesn't care. So I have to drop everything and run to clean one kid, and then run around to pin down the other. I've lost count of the mornings where I've stood in the lounge room and cried "There shall be no more pooping today, from ANYONE!". I've told Silvie it's
forbidden to poop between the hours of 7pm-7am, but she ain't really paying attention to that.

As Silvie approaches the 10 week mark, I can feel myself getting a bit anxious. On the one hand, I'm excited about experiencing all those 'normal' baby things which happen from that age. On the other, it makes me sad, though I can't exactly explain why. More than anything, I'm scared and nothing anyone says will change that. It's just something I'll have to ride out ('this too shall pass')

I'm grateful to fate for the decision it made for me that day back in February, I would have never consciously decided to have another child. I don't understand why people have additional children, when they can't handle the one/s they've already got. Yet, this is exactly what I've done. I know I'll find my groove and eventually life will become vaguely predictable again (don't laugh, I said VAGUELY). Until then, I'll make the most of the baby snuggles and enjoy this time when she's too young to destroy my house.

My babies are my universe.
One day I will sleep again.

Every little thing, gonna be alright

I can't believe how quickly this pregnancy is flying. When I was pregnant with Max, it was the looooooongest 39 weeks and 4 days of my life. Life has been so hectic, all I've thought about, is those day to day things I dislike about being pregnant. I haven't had much time to think about what life is going to be like with a newborn baby again. But when I do stop and think, I realise I'm scared witless.

Newborns are freaky little weirdos who have strokes. It doesn't matter how many times I tell myself otherwise, because this is my reality. People can reassure me all they like, and I fleetingly believe them when they tell me everything will be fine. But whenever I look at baby clothes, all I see is tubes, wires and infusion pumps.

When I decided to take Max to the hospital on the day of the stroke, I had no idea how sick he truly was. I was a paranoid first time Mum, who only took her baby to hospital because he 'wasn't quite right'. When I put him in the car, he was just a little bit pale, a little bit grumpy and a little bit sleepy. It took me less than half an hour to get to the hospital, but by the time I got there, he was unconscious and barely breathing. Only moments later, he was in full blown respiratory arrest. It only took half an hour for him to deteriorate to the point of near death. It still terrifies me, how lucky we were that day.

These days, it's pretty easy to recognise when my 3 year old is sick, but newborns aren't quite so easy. On the morning of the stroke, Max had no temperature, he drank his entire bottle and despite being a little bit grouchy, we still got a few smiles from him. There were no obvious signs that his brain was slowly filling with blood. I've never thought it was 'mothers intuition' which saved his life, it was pure luck.

I've avoided buying things for the new baby and I've had the perfect reasons to do that. We've had no money and we're moving house. Two perfectly valid excuses to avoid looking for things which I never expected to bring so much pain. I've always maintained that the week Max spent in Intensive Care, was actually the easiest week of this entire journey. During that week, I felt nothing, I felt numb. Now, I'm discovering pain I never knew I felt. My family have bought things for the baby, which I've largely avoided even looking at because it physically hurts. I feel horrible because they must think I'm completely ungrateful. But, I'm grateful beyond words, for everything they're doing for me.

I feel weak and pathetic for feeling scared about baby #2. From a rational perspective, I know there are no good reasons to fear any of this will happen again. I feel guilty for being so afraid, when I have so much to be grateful for. Max is an awesome little man and if anything happens to this baby, I know she'll still be awesome too.

We missed out on so many 'normal' parenting moments with Max. We bypassed 'babies first sniffly nose' and went straight to 'babies first coma'. I yearn to experience normal parenting anxieties. I want to sit back a little and watch my baby girl reach her baby milestones without hours of therapy and angst. I'm scared of that being taken away from me again.

The psych nurse in me knows that avoidance fuels anxiety, so I feel ridiculous for not being able to look at a cot, a stroller and a car seat. Which is why I'm writing this post. I've learnt, pouring my thoughts into a blog post is the most cathartic thing I can do at times like this. I've tried things like counselling, but I wind up spending the entire session, mentally critiquing the counsellor and their strategies- "Do you really mean that? Or are you just trying to make me feel validated?". I don't want stupid irrational anxieties to stop me from enjoying my baby girl. I need to remember, if lightening does strike twice, then we will be ok. Life will give me what I need, not necessarily what I want.

Music and song lyrics are two things which I can always rely on, to make me happy. So it seems fitting that I end this post with some words from the great Bob Marley.

Every little thing, gunna be alright.

What's Up?

It's no secret that I don't particularly enjoy pregnancy. Nonetheless, I've made it to 22 weeks with a lot less moaning this time. Actually, this pregnancy has comparatively flown, compared to my pregnancy with Max. I guess that's probably due to the fact that I'm so damn busy and I have a lot less time to feel sorry for myself.

Life has been hectic over the last few months and it doesn't look like changing anytime soon. On a good day, I'll tell you that everything is fine. On a bad day, I'll probably say the same thing. On a really bad day, I might admit to how I'm really feeling. The truth is, I'm struggling.

A few weeks after I found out I was pregnant, Rob lost his job. For the last 3 months, I've been working 50-60 hours a week to make ends meet. I love my job and I love my colleagues, but I miss my son so much. These are the last few precious months I have with him before his little sister comes. I'm really angry that this time has been taken away from us.

This year, our washing machine died, our dryer died, my car got towed because I couldn't pay my fines, my phone died, my car died, Robs car died, the phone & internet have been disconnected (several times), I got taken to VCAT because I couldn't afford the Rent and we both drove unregistered cars for months before I could afford to pay both rego's (I copped a $724 fine). Slowly, I'm getting on top of things but I'd be lying if I said, I don't despise my partner a lot right now. I've never aspired to the 'happily ever after' thing, but sometimes, just for one day, I'd love to be a princess.

Max had Round 3 of Botox at the end of May. This time, he only had the 'happy gas' and (true to form) he fought it, the entire time. It took 6 of us to hold him still and one play therapist trying to distract him with a video of Thomas the Tank Engine. Afterwards, he screamed so much, he puked all over me. It was our most successful Botox to date.








We're 5 weeks into an intensive schedule of post-Botox OT, we've been having sessions 3 or 4 times a week. Late last week, I realised I was dead set fed up with therapy sessions and cancelled one, just so we could go to the Zoo instead. I'm tired of spending what little free time I have, going to medical or therapy appointments. But, the gains he's made this time around, have been nothing short of amazing, so it's all been well worth the effort. Yesterday, one of his OT's said his right hand was now functioning at 'an advanced level' and I spent the most part of yesterday afternoon feeling incredibly gloaty about that.

Last month, our landlord gave us 4 months notice to vacate the house we rent. I suppose if I were a camel, this would be the straw. We can't afford to move until I get my tax return, and I'm not sure we'll have much luck getting a place whilst one of us is unemployed. I know the move is going to happen just as I'm entering third trimester and just as I'm starting to feel revoltingly uncomfortable. I know that I'm going to wind up lifting shiteloads of boxes and holding up the other end of the three seater couch as Rob swears and we struggle to squeeze it through the front door.

I'm trying not to dread the coming months and I'm trying to remain optimistic, despite the pregnancy hormones which make me wanna sulk like a teenager. Most days I laugh, some days I cry and everyday I'm grateful to work with such an amazing group of people, who probably don't realise how much they're carrying me right now. And then there's this face.......






.....which continually reminds me of everything I have to be thankful for. I think back to the time when I didn't know if he'd live or die and realise that the problems I have now, are trivial. I do still dabble in self pity from time to time (I'm only human, not a cyborg) but I refuse to wallow in it. Someday, we're gunna reach the top of that mountain and there's gunna be one hell of a great view when we get there.

"Life is what happens to you while you're busy making other plans"

In November 2014, Max is going to be a big brother. Surprise! So, in anticipation of all the questions I suspect people are asking, I've prepared this post. 

I thought you weren't planning on having more kids. The key word there is 'planning'. No, I wasn't planning on having more kids. It wasn't in my 1 year plan, my 5 year plan or my 10 year plan. But here we are. I never planned on having children full stop, but I fell pregnant with Max, and believed it was fates way of telling me I was meant to be a mother. Now, fate is telling me I'm meant to be a mother of 2. I don't exactly understand why right now, but I know it will make sense in time. How can I not trust fate when it's already given me the greatest gift in the universe?

Am I happy about it? Yes. Deliriously happy. You wouldn't guess it, I'm a moody, angry pregnant bitch and I'm so tired, I'm struggling to conjure up any facial expressions at all, let alone a smile. But I am happy. I wouldn't have chosen to follow this path, so I'm glad it chose me. Having said that, I suffered from depression when I was pregnant with Max and this pregnancy is already rapidly heading down the same path. I'm not depressed about the pregnancy, I suppose it's just a hormonal issue I have little control over. I know this dark cloud will lift once the baby arrives, for now, I hope people can cut me a little slack if I seem a bit mopey. 

How are you going to cope with another child, when you already struggle to cope with Max. I suspect most people will discuss this issue amongst themselves, rather than ask me directly. The simple answer is, I have absolutely no friggin' idea. But I'll cope. 3 years ago, I wouldn't have believed you if you'd told me everything we'd go through with Max. I coped with that, and I'll cope with this. Interestingly, Max's behaviour has settled quite a lot since I found out I was expecting. He's already had to cope with a few changes, like "Mummy can't do x,y,z with you right now, Mummy is going to throw up". Initially there were tears when I selfishly puked instead of playing with him, but he's quickly adapted to his new, lazy Mum. I'm actually really darn proud of how well he's adapted. 

Are you scared that this child will have a stroke too? Not exactly. I'm not scared of another stroke, but I am scared of 'rare, uncommon & unlikely'. Three words which would probably bring most people a certain degree of relief, frighten the bejesus out of me. Maybe only those who've lived it, could understand what I mean by this. 

Boy? Girl? Doesn't matter as long as it's healthy right? Wrong. Of course I want my child to be healthy, what parent doesn't? But what happens if it's not healthy? Will my world end? No. Will I love it any less? Of course not. I would be upset and angry and hate on the world for awhile but life will go on. Boy? Girl? It doesn't matter 'as long as he never feels pain I have no control over', and 'as long as she always knows how much I love and want her'. Everything else is a bonus. 

A friend of mine, who has a child with extra needs, says of her second born ('normal') child "she has healed me in places I never knew I was broken". This is how I view this pregnancy. It's (hopefully) my chance to end my child bearing days on a more positive note. It's made me realise, how angry and resentful I feel about everything we've been through. I suspect I'll need to write about some of these things as the pregnancy progresses. But for now, I'll leave you with this picture of our precious little munchkin v2.0

Mummy can't wait to hold you sweetheart xxx

Sweet Child O' Mine

When I wrote my last post, I intended it to be my last for 2013. But, over the last few weeks, things have happened which have left me feeling, I dunno, lost. I guess I wanted to write this post because I don't know how I'm feeling and writing helps me figure these things out.

Before I start, I need to say, that 99% of me is incredibly grateful to have my son. I am fortunate I was able to conceive a child, I am fortunate he survived the stroke and I am fortunate he is doing brilliantly in terms of his development. There are so many people doing it tougher than us. But more and more, I'm discovering, it's impossible to be grateful all the time. Now and then, that pesky 1% rears its ugly head, it makes me feel pissed off and completely overwhelmed.

It all started a few weeks ago, when Max had a paradoxical reaction to the pre-med he had, before his Botox. Although I've been with him throughout numerous unpleasant medical procedures, this reaction was right up there as one of the worst. I can't describe how it feels to see your child screaming and thrashing around so violently. I god damn hated the fact I couldn't do anything to make it better. I couldn't give him a cuddle, kiss his 'owie' and send him on his way. All I could do, was be there for him, completely powerless, utterly useless. I expected, that after a good nights sleep, I'd forget about the whole shebang. Shit happens, life goes on and I've dealt with these kinda crappy situations before. But, it's now been a few weeks and I'm still feeling pissed off that my baby has to go through these things.

A week later, we were back at RCH for an appointment with the eye doctors. Max's right eye turns outward and this is reviewed every few months. I absolutely loathe the eye clinic. The waiting time is long and waiting rooms + hyperactive toddler = mummy go cray-cray. Then there's the eye drops he has to have before seeing the Opthamologist. They sting and he can't see properly for hours, which makes him understandably cheesed off. The outcome is always the same, he'll have surgery to correct the eye, once he's old enough to do a comprehensive assessment (it's all about measuring exact angles of eyeballs, that's about all I understand!)

At the last appointment, it was suggested we try putting a patch on his left eye, to force his right eye to work a bit harder. See the risk is, if his right eye is slacking off all the time, it will start losing vision. I told the doctor it would be all but impossible to keep a patch on his eye for any significant length of time. I know that sounds like I'm a complete defeatist, but I know my kid. The doc wasn't fazed, he explained that vision loss was rare anyway and said we'd review it in a few months.

So, I've rocked up to the next review, prepared for the wait, prepared for the nasty eye drops and prepared to hear the same crap all over again. I wasn't prepared to be told that his vision was deteriorating. My little boy was going blind in his right eye. I was shattered.

It's now essential that Max wears a patch over his left eye for 2 hours each day. 2 whole hours. I despairingly asked the woman how the f*** would I convince a 2 year old to co-operate with this. She suggested I stick stickers on it. Admittedly, I was a total bitch when I told her that stickers were a stupid idea, when he wouldn't be able to see them anyway. I could feel the lump in my throat and being the type who hates crying in public, we took the patches and left.

The next day, I summoned every ounce of positive enthusiasm I could muster and we tried on the patch. I wore a patch too, I sang our favorite pirate song, I talked like a pirate (which normally amuses him), I danced like a pirate, whilst Rob clapped and cheered to spur him on. He ripped it off, we put it back on, he ripped it off, we put it back on. After one measly minute, the patch had completely lost its stick. The longest it stayed on, was around 3 seconds. Since that day, we've tried every approach we can think of and the longest it's stayed on was 10 seconds. The only options I have left, is (a) gaffer tape the darn thing to his head or, (b) put him in a straight jacket.



Arrrrrr, see Max? Being a pirate is cool ok? No? Damn.

By this stage, I'm kinda hystrionic, thinking my son is going to go blind and it's all my fault. See that's the thing, despite having an amazing support crew, it all comes down to me. I'm the person who spends the most time with Max and it's my responsibility to stay on top of these things. My family and Rob do an amazing job with him, but at the end of the day it all boils down to me. If his right
hand function doesn't improve, it's my fault. If his vision continues to deteriorate, it's my fault. If his language development remains below par, then that's my fault too (etc). Most of the time, I'm ok with that but right now, I'm tired of the pressure. I want to worry about all the normal bullshit, that other parents do.

(But I digress, thanks to the joys of google, social media and our amazing EI worker, we're developing a Plan B for the eye patching. Watch this space)

Which brings me to the final issue, which is Max's behavior. This is something I've been hesitant about writing about in depth, for 2 reasons- (1) It's really hard to find the right words to describe it, and (2) I'm tired of hearing "it's just a boy thing", "he sounds like a normal toddler" or "he'll grow out of it". I know people say these things with good intentions, and maybe they're right, but unless their child has a brain injury, I wish they'd all just shut up.

I've tried to go with the 'normal toddler' thing, but deep down, I've always felt something was different. I'm the person who's taken him to gymbaroo, music, dancing, swimming and play groups. I've taken him to every single class or group and every single time I've witnessed the same thing. Max is different from the other toddlers.

His energy levels make the other toddlers look listless. Whilst the other toddlers can focus on a task for a brief time, Max lasts about 3 seconds before he's off and running again. When the other parents are sitting down, sipping coffee, I'm the parent who's stopping her child from (a) playing in the toilet, (b) running out the front door, (c) ripping out the indoor plants, (d) trying to pull paintings off the wall, (e) grabbing and throwing piles of brochures, (f) throwing everything in general and knocking someone unconscious, and (g) I can't be bothered listing any more. Overall, his behavior is normal toddler behavior, but it's extreme. Far more extreme.

The most frustrating part is, I'm the person who cops the absolute worst of his behavior and I'm the person, he listens to the least. I know, I know, this part is normal but I'm tired of people smugly telling me what strategies have worked for them. You know what? I've tried that too and a zillion other strategies you'd probably never even thought of and he doesn't listen to me. Any kind of reaction he gets from me, is hilarious to him, regardless of how angry I might be.

My best strategy is to try to keep a poker face, remain emotionally neutral and talk him through the situation. It doesn't necessarily solve the problem, but it usually stops him from escalating. I'm acutely aware of the fact that I often look like a totally crap parent, because I appear to be ignoring his behavior. It's particularly unhelpful when other people decide to intervene instead. Yep thanks strange lady at Woolworths, now that you've told my son off for throwing things off the shelf, he's going to spend this entire god damn shopping trip doing exactly that.

The throwing. Oh my god. The throwing. If you're new to this blog, you wouldn't know about Max's pathological throwing problem. Read this




My latest injury. Lump on the head courtesy of Max throwing a hard, wooden train station at me

I can see the raised eyebrows we get, not only from strangers, but from those who are close to us as well. I know my parenting skills are criticized when I'm not around and I know I'm blamed for my son being out of control. I wish someone would just pat me on the back and say "I know he's difficult, I know you're trying your best and you're doing a good job". If people spent a week being Max's mother, they might reevaluate their expertise.

I've casually mentioned this stuff to Max's doctors at every review, knowing I'd be told "he's a normal toddler" and "it's too early to assess whether this has a Neurological basis anyway". I just wanted it noted that this is an ongoing issue.

We've recently started working with Jen, an OT from the RCH Rehab services and thus far, every session has been a disaster. Last week, Jen contacted our Early Intervention worker Caroline to express her concerns about Max's behavior. Jen plans to have him reviewed by Neuropsychology so we can assess whether his behaviors have a Neurological cause. I'm incredibly relieved that finally someone else can see it and doesn't blame me. Even though I've long seen it coming, I'm pretty scared about the diagnosis I strongly suspect they'll eventually make. But we'll deal with that if and when it happens.

Jen also expressed concern that I was burning out and struggling to cope. She's right on that one too. I am struggling and I'm not coping. I'm not a crier, but lately I've cried every single day. I hate it all, and I want the world to stop turning so I get off for awhile. I'm overwhelmed and very alone.

None of these recent events is a huge deal in the grand scheme of life. They're just stumbling blocks along the way. I know many people who deal with far greater things than I do and I really don't want to be a whining sook.

Max is my universe and he's the silver lining to every storm cloud I encounter. I love him more than I ever imagined I could love a person. He's charismatic, confident, mischievous, loaded with character and struts to the beat of his own drum. I always wanted my child to be an independent thinker and not a person who follows the crowd. I definitely got my wish. Time will pass, I'll get my head around things and life will go on. But for now? Just go easy on me ok?

And so this is Christmas

A few days ago, my mother alerted me to the fact that I haven't written a post here since July. Oops! I often have a dialogue running through my mind of what I'd like to write about, but rarely do I make the time to actually do it. So, now I find myself writing a 2013 wrap up, with no idea where to start!

Compared to the last 2 years, 2013 has been relatively uneventful. In May, Max had his first round of Botox and an intensive regime of therapy followed. We saw an Occupational Therapist 3 times a week and then did our own therapy in between. 6 weeks later, Max and I were both completely burnt out! He was always happy to see the OT arrive, but over time, became less than happy to do any of their activities. There were plenty of tears and tantrums involved. If we're unable to jolly him up or find another suitable activity, it creates a conundrum for me. Do I keep cajoling him into completing the task or do I allow him to take a break? Obviously, there are some things he just has to do for his hand function to improve. However, I won't allow a therapist to continue if he's really distressed. He is going to need therapy for a long time, there's nothing to gain by making it a negative experience. It's a fine line, but I'm thankful we now have great OT's who make our sessions fun and know when to back off.

The great news is, we've seen amazing results. As the Botox wore off, the improvements were largely maintained. His thumb abduction is much better and his hand is getting stronger. There is still a way to go, but it's really exciting to see him moving forward. 2 years ago, my little boy didn't even know he had a right arm, and when he eventually realized, he didn't have the co-ordination to use it. It's been a long, and often tedious process, so every step forward makes my heart smile.

Max had his 2nd round of Botox last week and the whole experience was a disaster. Whilst the Botox injections went smoothly, he had a paradoxical reaction to the pre-med. For an hour or so, he screamed until he turned purple and thrashed violently in my arms. Eventually I couldn't hold him anymore and the nurse placed a mattress on the floor. He was thrashing so much, I had to restrain him so he wouldn't bang his head. He eventually fell asleep in my arms. The experience has motivated me to really push hard with the therapy we're about to commence. If we can make further gains to his hand function, we might be able to avoid another round of Botox entirely. Perhaps I'm being idealistic in thinking this but I don't see the harm in aiming high.

From a Hematological perspective, things are still in status quo. Max's platelets have remained in the normal range ever since his last treatment 2 years ago. However, his immune system still hasn't fully recovered from the treatment, so we don't know what will happen once it does. The ITP may come back, or it may not. Ordinarily, the immune system recovers after 6 months, but it's been 2 and a half years and we're still waiting! Max was the youngest known person in the world to receive this treatment, so it's always been unknown just how it would affect him. I'm growing weary of seeing so many different Hematologists. They all have different opinions and I still don't know what to believe. For now, we continue to wait and see (doctors orders!)

A few weeks ago, we spent a week in Albury/Wodonga meeting with other pediatric stroke survivors and their families. This is now the 2nd year of the 'retreat' and we had 8 families attend (up from 3 families last year). In 2013, I've connected with several new families from various parts of Australia and slowly we are building up a stronger support network. I'll try and write a post about our time away, but here's some photos for now-




Max and his new friend Zen.









Some of our amazing kids!



Max's beautiful 'girlfriend'Ruby (aka 'Woobee'). He drove her bonkers with his overzealous love.

This year, I've finally started getting my health and fitness back on track. I've lost 40kg, with another 20kg to go! I've started running again, which is something I loved in my younger days. It was a massive struggle initially, and I felt guilty about the time spent away from Max. Now, I love being out on the road, with the headphones on and no one to bother me! Max gets excited when I go, I think he's learnt that I always come back in a ridiculously good mood. I've also started back on Community Radio and present a show once a week called 'Faith, Groove and Parody'. I also contribute pieces to a website called 'Little Melbourne', which is a guide to what's on in Melbourne for kids and families. It's a fantastic opportunity, and I love every second of it. I'm still working as a psychiatric nurse at Werribee Mercy's psych unit. As much as I complain about the place, I secretly love the chaos and the acuity of our clientele.

In 2013, we've been blessed by the generosity of our family and friends. Without their unwavering support, I'm not sure how I would've survived the 'not so good' times. In particular, I want to thank my parents Wendy and Gary for always being there for us (I could dedicate an entire post to everything they do!). As well as my sisters Tara and Kylie. They are both such beautiful, caring people- qualities I'm often lacking.

So that's the 2013 in a nutshell



Help!! I'm in a nutshell!!!

(Couldn't resist the Austin Powers gag)

Rob, Max and I would like to wish everyone a happy and safe Christmas. Your love and support means more than you could possibly know.





























See you in 2014 xxx

The Power of Memories

As a general rule, I try to not complain about the various tests and procedures that Max needs to undergo. At times, my heart literally aches for him, but the only thing I can do is acknowledge the pain and keep moving forward. Often, people will hear me say "ouch", that means my heart is hurting. But then I move on.

Earlier last week, I received a letter from the hospital with a date for Max's next round of Botox. After reading the letter, I felt physically ill.

I'm sure I've mentioned it before, but when Max got sick, I made a pact that I would always be with him for every medical procedure. When he's distressed, he wants his mother, and why would I deny him of that? Regardless of my emotions, my little boy needs me. My motto is 'if he has to go through in, then (metaphorically) I do too'.

I've been there through countless blood tests, cannulations and multiple procedures where I've had to hold him down. I hate it. The blood taking is getting harder as he gets older, he flips out the second he see's a tourniquet.

These days I'm an expert in restraining him, but it never gets physically or emotionally easier. The infuriating part, is when the doctor/nurse tells me I'm not restraining him properly. Max is different to what they're accustomed too, he needs his left hand held and both of his feet (his feet are especially adept at causing chaos). I've often been 'told off' for not holding his right arm properly. That's when I gritt my teach and inform them, he has hemiplegia in that arm and his feet are far more likely to cause damage. Cue awkward silence.

I look back to the time when Max had his first Immunisations. It was before the stroke and I was a quivering mess by the thought of him being subjected to pain. When he cried, I cried. Nowadays, I feel pretty silly about that and Immunizations are a breeze.

When Max had his first round of Botox, he didn't have a general anaesthetic, he had the 'happy gas'. The only problem I could foresee was being able to keep the mask on his face because I knew he would hate it.

Only one parent was allowed to stay with him during the procedure and that person was me. As predicted, he hated the mask, he sobbed and tearfully repeated the word 'car'. His little voice was muffled by the mask and the gas. Poor little guy just wanted to get in the car and go home.

It was at that moment, my mind flashed back to the day of the stroke. On that day, he had an oxygen mask on, when they drilled into his shin, he let out a bloodcurdling scream which was muffled by the mask. They told me he was unconscious, they told me he wouldn't feel it. I was all by myself. It's the one moment which continues to haunt me from time to time.

The day he had Botox was the first time since that very first day, where he'd worn a face mask. Those muffled sobs of 'car' took me back to the moment of that bloodcurdling scream. The exact point in time, I felt emotional pain unlike anything I'd ever experienced before.

My legs started shaking, I held onto the trolley so I didn't collapse. I took a few deep breathes and reminded myself of the task at hand. I stroked Max's hair and sung to him until the gas took effect and he relaxed. The procedure was over in a matter of minutes.

That's the reason I'm dreading Botox round 2. Such a small thing which evokes such a powerful reaction. I'm still going to be the one who stays with Max during his next treatment. I know that avoiding painful experiences only increases the power they hold over you. So I'll take a deep breath, go into that treatment room and remind myself that we never truly know how strong we are, until being strong is the only choice we've got.

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