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.
- Posted using BlogPress from my iPhone
Wednesday, 17 July 2013
Sunday, 30 June 2013
Botox- Round 1
Last month, Max had his first round of Botox treatment. Many people don't know (I didn't) that Botox was originally intended to be used to help control spasticity. In layman's terms, Max has certain muscles in his arm/hand which are too tight and make certain tasks very difficult for him. Botox deadens those tight muscles for a few months. In that time, we do intensive therapy to strengthen the other muscles which are weak from underuse. The hope is, once the Botox wears off, those weak muscles will be stronger and more able to counteract the nasty tight ones. Confused yet?
One of Max's biggest challenges, is that his right thumb is almost always tucked in. You'd be surprised at how much of a negative impact this has on his functioning. Try spending a day with your thumb stuck to the palm of your hand and see how you go.
The image on the left is a 'normal' hand and the image on the right is similar to Max's hand
The Botox was injected into 3 different parts of his right arm/hand. It can take 1-2 weeks before it starts to take effect but we saw an improvement almost straight away. Later that evening, his thumb was in a far more functional position. For a brief time, I allowed myself to be taken by the fantasy that this was a permanent cure.
Botox day
We started doing intensive therapy a few days later. At the moment we are seeing our Occupational Therapists 3 times a week (sometimes 4), as well as doing lots of work at home. We also do lots of sessions at the pool and lots of climbing at the park. I think pictures tell the story better than words can....
We're trying to do lots of 2 handed activities
He climbs up the top, so he can slide down any way he pleases!
Toddler gym
He LOVES the DustBuster
Sitting in his 'spinning' chair. Spinning is great Vestibular Stimulation, which is great for his balance and a whole range of things
Just randomly holding a card in 'righty'
A session with one of our gorgeous OT's Caroline
Holding a scarf in each hand at Music Class
A new splint to stretch his thumb out at nighttime. We're not having much luck!
As you can see, we've been pretty busy. Keep your fingers crossed that we can achieve some long lasting results!
Thank you to everyone for supporting us along this journey.
Faith and Max
One of Max's biggest challenges, is that his right thumb is almost always tucked in. You'd be surprised at how much of a negative impact this has on his functioning. Try spending a day with your thumb stuck to the palm of your hand and see how you go.
The image on the left is a 'normal' hand and the image on the right is similar to Max's hand
The Botox was injected into 3 different parts of his right arm/hand. It can take 1-2 weeks before it starts to take effect but we saw an improvement almost straight away. Later that evening, his thumb was in a far more functional position. For a brief time, I allowed myself to be taken by the fantasy that this was a permanent cure.
Botox day
We started doing intensive therapy a few days later. At the moment we are seeing our Occupational Therapists 3 times a week (sometimes 4), as well as doing lots of work at home. We also do lots of sessions at the pool and lots of climbing at the park. I think pictures tell the story better than words can....
We're trying to do lots of 2 handed activities
He climbs up the top, so he can slide down any way he pleases!
Toddler gym
He LOVES the DustBuster
Sitting in his 'spinning' chair. Spinning is great Vestibular Stimulation, which is great for his balance and a whole range of things
Just randomly holding a card in 'righty'
A session with one of our gorgeous OT's Caroline
Holding a scarf in each hand at Music Class
A new splint to stretch his thumb out at nighttime. We're not having much luck!
As you can see, we've been pretty busy. Keep your fingers crossed that we can achieve some long lasting results!
Thank you to everyone for supporting us along this journey.
Faith and Max
Monday, 27 May 2013
Once an Alcoholic, always an alcoholic
They say, "once an alcoholic, always an alcoholic".
So, I guess I'm an alcoholic.
It started, when I was 21 and my childhood sweetheart broke up with me. We'd been together just over 4 years and I was devastated. I don't deal well with being dumped, I get reeeeeeally ugly. Except in this instance, it hurt so badly, I didn't tell a soul.
Life was different back then, there was no Facebook, Instagram or Twitter to ventilate to. 'Talking about it' meant picking up the telephone and calling someone, but there's no way I would've done that. It was my final year of university, so during the daytime, I studied and come 5pm, I started drinking. I was a fairly high functioning alcoholic, who managed to get decent grades and hold down decent jobs.
I lived alone in those early days, no one could've known how much of a grip alcohol was starting to have over me. Even if they had, I was too hellbent on a path of self destruction to have cared. When I eventually started going out again, I chose friends and boyfriends who didn't mind me drinking. We all had our own demons, and none of us really cared.
I spent the majority of my 20's either working, or drinking. I made a lot of bad decisions, I lost a lot of good friends, and I did some really stupid things, which I still pay for today.
By the time I reached my late 20's, I could out drink most grown men. All my friends were drinkers, every night we'd polish off a slab of beer or I'd drink half a slab on my own. I knew I had a problem but I felt completely powerless to stop. There were days, I literally felt pain in my liver.
I felt so ashamed of myself for not being strong enough to quit, I tried so many times to stop, but only ever lasted a day or 2. Every failed attempt at quitting, only fueled the addiction even more. What was the point in even trying to stop, when I was only going to fail?
Then one day, I discovered I was pregnant and I stopped drinking. Just like that. It was hell. The pregnancy hormones were raging and although the physical withdrawals didn't last long, the psychological withdrawals lasted well over 2 years.
When Max was in ICU, I wondered how I was going to get through, without alcohol. For almost 10 years, I used alcohol to block out every emotion imaginable. Yet, here I was, living a total nightmare with no way of numbing myself.
The ICU nurses often encouraged me to leave his bedside, in order to maintain my own sanity and prevent burnout. I always denied that I needed time away, but in reality, I did. On two occasions that week, we went to a pub not far from the hospital. I drank a bit on those nights, but made sure I stayed sober enough to still know what was going on.
Those two nights of drinking, only reinforced, my drinking days were well and truly over. There was something far more important in my life now and I needed to find a new way of coping. From that point onwards, I stopped craving alcohol. I'm still not entirely sure, how I coped during the early stages of this journey. There's every possibility I was completely batshit crazy but no one was brave enough to tell me.
Nowadays, I still have the occasional drink and have no problems stopping after one or two. I'm extremely cautious about the amount I drink and how often, because there is no chance in hell I'll let alcohol control me ever again. I'm happy for Max to know who I used to be, but he will never meet the person I was. That person went out the trash, along with a few hundred empty beer bottles.
My name is Faith and I'm an alcoholic.
So, I guess I'm an alcoholic.
It started, when I was 21 and my childhood sweetheart broke up with me. We'd been together just over 4 years and I was devastated. I don't deal well with being dumped, I get reeeeeeally ugly. Except in this instance, it hurt so badly, I didn't tell a soul.
Life was different back then, there was no Facebook, Instagram or Twitter to ventilate to. 'Talking about it' meant picking up the telephone and calling someone, but there's no way I would've done that. It was my final year of university, so during the daytime, I studied and come 5pm, I started drinking. I was a fairly high functioning alcoholic, who managed to get decent grades and hold down decent jobs.
I lived alone in those early days, no one could've known how much of a grip alcohol was starting to have over me. Even if they had, I was too hellbent on a path of self destruction to have cared. When I eventually started going out again, I chose friends and boyfriends who didn't mind me drinking. We all had our own demons, and none of us really cared.
I spent the majority of my 20's either working, or drinking. I made a lot of bad decisions, I lost a lot of good friends, and I did some really stupid things, which I still pay for today.
By the time I reached my late 20's, I could out drink most grown men. All my friends were drinkers, every night we'd polish off a slab of beer or I'd drink half a slab on my own. I knew I had a problem but I felt completely powerless to stop. There were days, I literally felt pain in my liver.
I felt so ashamed of myself for not being strong enough to quit, I tried so many times to stop, but only ever lasted a day or 2. Every failed attempt at quitting, only fueled the addiction even more. What was the point in even trying to stop, when I was only going to fail?
Then one day, I discovered I was pregnant and I stopped drinking. Just like that. It was hell. The pregnancy hormones were raging and although the physical withdrawals didn't last long, the psychological withdrawals lasted well over 2 years.
When Max was in ICU, I wondered how I was going to get through, without alcohol. For almost 10 years, I used alcohol to block out every emotion imaginable. Yet, here I was, living a total nightmare with no way of numbing myself.
The ICU nurses often encouraged me to leave his bedside, in order to maintain my own sanity and prevent burnout. I always denied that I needed time away, but in reality, I did. On two occasions that week, we went to a pub not far from the hospital. I drank a bit on those nights, but made sure I stayed sober enough to still know what was going on.
Those two nights of drinking, only reinforced, my drinking days were well and truly over. There was something far more important in my life now and I needed to find a new way of coping. From that point onwards, I stopped craving alcohol. I'm still not entirely sure, how I coped during the early stages of this journey. There's every possibility I was completely batshit crazy but no one was brave enough to tell me.
Nowadays, I still have the occasional drink and have no problems stopping after one or two. I'm extremely cautious about the amount I drink and how often, because there is no chance in hell I'll let alcohol control me ever again. I'm happy for Max to know who I used to be, but he will never meet the person I was. That person went out the trash, along with a few hundred empty beer bottles.
My name is Faith and I'm an alcoholic.
Sunday, 26 May 2013
10 weeks of normal
The first 10 weeks of Max's life, is something I've mostly avoided writing about. Partly, because it feels irrelevant, compared to our lives today. In the lead up to the 2nd anniversary of Max's stroke, I've found myself reflecting back on those first 10 weeks. 10 whole weeks of being 'normal' parents, with 'normal' worries. A time, which Max deserves to read about one day, if he chooses to. This post is for him....
Max, I was completely floored and unprepared for the intensity of the love I felt for you. It frightened the be-Jesus outta me and made me a little cuckoo (nothing has changed). For the first few weeks, I couldn't sleep, unless your father was awake to watch you breathe. One night, I busted him fast asleep during his 'watch'. Initially, I was furious but then realised, I was being irrational. Nonetheless, the sleeping routine that followed, was also a little bit nutzo. Your father and I slept on the couches, with your little basinette in between us. I couldn't fall asleep, unless both of us could see you.
When I was pregnant, I told you that once you were born, you should only poop for Daddy. You timed your first major poop explosion, for when I'd ducked out to a doctors appointment and poor Daddy copped it. When I got home, your fathers face was white. His retelling of the events, made me laugh so hard, I nearly broke a rib.
You first smiled at me when you were 4 weeks old. It came on the exact same day, I was so exhausted and had started wondering if you actually hated me. That one little smile, was the most amazing thing I'd ever seen and it melted me completely. I'm so happy I was the first person, to see your beautiful smile.
Gorgeous newborn smile
The first proper smile I got on camera
What were you thinking little man?
You had your first Immunisations when you were 7 weeks old. You cried and then I cried because I felt like a total meaner. We'd bought along a bottle to pacify you afterwards but I didn't put it together properly and it spilt all over your face (you cried some more). I was horrified!
You loved bath time, but for the first few moments you always pulled the 'Charles Manson' face....
.....then you remembered that baths were awesome and you'd relax....
You were a total mummy's boy and always wanted me to hold you. You spent most of the day and half the night in my arms, despite many people warning me not to 'create a monster'. After the stroke, you hated being held like that. I'm so glad I spent those first 10 weeks snuggling with you.
Your favourite song was 'Reminiscing' by Little River Band. I used to play it to you, when you were crying and it almost always settled you. I heard that song just the other day and the emotions it bought back gutted me.
A lot has changed since those first 10 weeks. I look back at the photos of us, your father and I look so different- so young, so unaware, so completely innocent. We could never have known how close we'd come to losing you. I still wish I could go back in time and prevent you from going through every shitty thing you've gone through.
Even though I knew you were destined for greatness, you've astounded me with everything you've achieved in only 2 years. I guess you're not really a baby anymore, you're a little boy with an amazing ability to cause mischief.
I like to think I can teach you about the world but in reality, you teach me far more. You helped me find strength amidst the chaos. For that reason, this will be the last anniversary related post I write. I'm burying it in the past where it belongs. I doubt June 2nd will ever pass entirely unnoticed but there's no point dwelling on it when the future is so bright.
Onwards and upwards little man. Don't let anything hold you back.
- Posted using BlogPress from my iPhone
Max, I was completely floored and unprepared for the intensity of the love I felt for you. It frightened the be-Jesus outta me and made me a little cuckoo (nothing has changed). For the first few weeks, I couldn't sleep, unless your father was awake to watch you breathe. One night, I busted him fast asleep during his 'watch'. Initially, I was furious but then realised, I was being irrational. Nonetheless, the sleeping routine that followed, was also a little bit nutzo. Your father and I slept on the couches, with your little basinette in between us. I couldn't fall asleep, unless both of us could see you.
When I was pregnant, I told you that once you were born, you should only poop for Daddy. You timed your first major poop explosion, for when I'd ducked out to a doctors appointment and poor Daddy copped it. When I got home, your fathers face was white. His retelling of the events, made me laugh so hard, I nearly broke a rib.
You first smiled at me when you were 4 weeks old. It came on the exact same day, I was so exhausted and had started wondering if you actually hated me. That one little smile, was the most amazing thing I'd ever seen and it melted me completely. I'm so happy I was the first person, to see your beautiful smile.
Gorgeous newborn smile
The first proper smile I got on camera
What were you thinking little man?
You had your first Immunisations when you were 7 weeks old. You cried and then I cried because I felt like a total meaner. We'd bought along a bottle to pacify you afterwards but I didn't put it together properly and it spilt all over your face (you cried some more). I was horrified!
You loved bath time, but for the first few moments you always pulled the 'Charles Manson' face....
.....then you remembered that baths were awesome and you'd relax....
You were a total mummy's boy and always wanted me to hold you. You spent most of the day and half the night in my arms, despite many people warning me not to 'create a monster'. After the stroke, you hated being held like that. I'm so glad I spent those first 10 weeks snuggling with you.
Your favourite song was 'Reminiscing' by Little River Band. I used to play it to you, when you were crying and it almost always settled you. I heard that song just the other day and the emotions it bought back gutted me.
A lot has changed since those first 10 weeks. I look back at the photos of us, your father and I look so different- so young, so unaware, so completely innocent. We could never have known how close we'd come to losing you. I still wish I could go back in time and prevent you from going through every shitty thing you've gone through.
Even though I knew you were destined for greatness, you've astounded me with everything you've achieved in only 2 years. I guess you're not really a baby anymore, you're a little boy with an amazing ability to cause mischief.
I like to think I can teach you about the world but in reality, you teach me far more. You helped me find strength amidst the chaos. For that reason, this will be the last anniversary related post I write. I'm burying it in the past where it belongs. I doubt June 2nd will ever pass entirely unnoticed but there's no point dwelling on it when the future is so bright.
Onwards and upwards little man. Don't let anything hold you back.
- Posted using BlogPress from my iPhone
Monday, 15 April 2013
What to Expect- The Toddler Years
Throughout my pregnancy, the book 'What to expect, when you're expecting' was my bible. After my horrific child birthing experiencing, I was angry. They lied. Childbirth was nothing like the book had told me to 'expect'. When the baby's head is 'crowning', it isn't simply a 'burning sensation'. It feels like your lady bits are being attacked by a chainsaw, coated in sulphuric acid.
Nevertheless, in the weeks following Max's birth, I carried 'What to expect- The first year', everywhere I went. Max was about 8 days old, when I threw the book at the wall. Because that book lied as well. Newborns don't feed every 2-4hours, they (well mine) want to be sucking your nipples until they're bleeding and cracked 24/7. Even from birth, Max had his own unique way of doing things and life was nothing like I 'expected'.
I was shopping the other day and I stumbled across this-
Given my previous experiences with the 'what to expect' crowd, I assume this book is full of complete and utter sh*t. I was tempted to flick through it a little, but the illustrations alone made me nauseous. I'm certainly no expert on toddlers and the oldest toddler I know is 28 months, so the extent of my knowledge ends there. Nonetheless, I think I could impart a little bit of realism into the whole 'what to expect' bizzo.
Note: Please remember, this is all intended in good humour and is by no means a replacement to scientifically proven parenting advice (that's what Attachment Parenting is right?). Besides, you might get lucky and have a toddler as placid as the ones adorning the cover of the book- just (a) don't gloat about it and (b) don't give them a matching 'bowl' haircut.
When you have a toddler, you can expect......
And then they'll look at you, all like this.....
And then you'll feel, all like this.....
Nevertheless, in the weeks following Max's birth, I carried 'What to expect- The first year', everywhere I went. Max was about 8 days old, when I threw the book at the wall. Because that book lied as well. Newborns don't feed every 2-4hours, they (well mine) want to be sucking your nipples until they're bleeding and cracked 24/7. Even from birth, Max had his own unique way of doing things and life was nothing like I 'expected'.
I was shopping the other day and I stumbled across this-
Given my previous experiences with the 'what to expect' crowd, I assume this book is full of complete and utter sh*t. I was tempted to flick through it a little, but the illustrations alone made me nauseous. I'm certainly no expert on toddlers and the oldest toddler I know is 28 months, so the extent of my knowledge ends there. Nonetheless, I think I could impart a little bit of realism into the whole 'what to expect' bizzo.
Note: Please remember, this is all intended in good humour and is by no means a replacement to scientifically proven parenting advice (that's what Attachment Parenting is right?). Besides, you might get lucky and have a toddler as placid as the ones adorning the cover of the book- just (a) don't gloat about it and (b) don't give them a matching 'bowl' haircut.
When you have a toddler, you can expect......
- To find the most random of crap, in the most random of places. There'll be egg flips in your bed, shoes in your bathtub and Mr Potato Head in your toilet. None of this will seem strange to you.
- To find yourself saying things, which are utterly ridiculous but again, don't seem strange to you. Examples include, but are not limited to the following-
- Why is the dog covered in noodles?
- Do not throw that helicopter at the....*smash*, *yelp* dog.
- For the love of Jebus, will you STOP harrassing the dog?
- Things that go in the rubbish bin, stay in the rubbish bin. Except for shoes. Why are my shoes in the rubbish bin?
- Please stop trying to eat my shoe.
- Mummy is not Mr Potato Head.
- Yes it's a car. Yes it's a car. Yes it's a car. Yes it's a car. Yes it's a car. Brrrrrrooom. Yes it's a car.
- We don't eat dead bugs. Actually, we don't eat any bugs, alive or otherwise. For the love of cheesecake, spit that bug outta your mouth.
- The toilet bowl is not a swimming pool.
- The ipad has gone to sleep now. Nigh nigh ipad. In fact, everything has gone to sleep, nigh nigh train, nigh nigh hot wheels and nigh nigh to every annoying toy I'd secretly love to throw in the bin.
- It's a wall. Not a canvas.
- We don't hit people across the head with the remote control.
- Mummy doesn't need you to repeatedly ram the fridge door on her head.
- Stop sticking crayons down mummy's bra.
- Please don't rub Mr Monkey on your doodle
- To abandon every parenting/discipline/educational strategy you had carefully planned out. Unless you have a textbook child, you'll spend most of your day flying by the seat of your pants. You might as well flush your disciplinary plans down the toilet, alongside the hairbrush, toast and random bits of fluff you find there. For example
- My friend was successfully using time-out with her Master 2. Until the little fella decided he actually liked being in time-out and started deliberately hitting her repeatedly, so he'd get sent there.
- My own son, who is bemused by my firm voice, giggles at my stern voice and laughs maniacally at my 'mummy's lost her shiz' voice. I have absolutely no control over him. Any type of reaction is a win in his books, and there's only so long I can maintain a poker face, whilst he's lobbing things at my head (The other day I was hit in the eye by a toy pineapple. Seriously. A flying pineapple)
- Extreme variances in mood. Toddlers are like land mines, you tip toe around them all day, trying to avoid anything which might trigger a full blown meltdown. Nonetheless, they will still loose their sh*t, with monotonous regularity. Sometimes, you won't even know why. You'll spend a large portion of your day, feeling like this.....
And then you'll feel, all like this.....
- Mummy will always cop the entire repertoire of vile toddler behaviour. This is because they love you more than anyone else, in a sense it's a compliment, but you will find yourself wondering if your child actually hates you. In most instances, your toddler will pull out their halo for everyone else and then don the devil horns for you. Naturally, people will assume it's their superior way of interacting with your child that causes this response. It's not. We call those people 'douche bags'.
- Every single night, you'll stand by their bed watching them sleep and wonder if you could possibly love them any more than you already do. Then you'll wake up the next day and discover (a) that you totally love them even more than you did yesterday, and (b) there's a dinosaur in your undies drawer.
Monday, 8 April 2013
Goodbye Jess
There have been two people, who have been particularly influential in Max's rehab journey- Andrew (Neuro-Developmental Therapist) and Jess (Physiotherapist). I've written about Andrew a few times, most recently, here, but it's been a long time since I've written about Jess since the day they met. It's been something I've intended to do for a long time, but haven't- until now. Yesterday, I got a phone call from Jess, telling me she had a new job and that she was leaving. I felt sick and really hope, she couldn't hear me choking up over the telephone. Last night, I lay in bed wondering how on earth I could say goodbye and thank someone who'd given us so much?
In the days, weeks and months after Max's stroke, I obsessively read everything I could, about brain injury rehabilitation. I learnt, that early intervention was crucial for optimal recovery, particularly in the first 3 years of a childs life. Max was assessed for inpatient rehab, but wasn't accepted. On discharge, we had to wait 6 weeks before we had an assessment with the out-patient rehab team and it was there, we were told, they would see him again "once he was more delayed". I was pretty pissy about the whole situation and wrote this post Can anyone help?. I was inundated with responses, it took me months to follow up on every suggestion. Eventually, I received an email from someone who told me about an Allied Health service called 'SPOT for kids', specifically for kids with brain injuries. This is how we came to meet Jess.
For months, I worked extra shifts to meet the cost of having a private physiotherapist and we've since been granted funding for it. Max absolutely adored Jess, everytime they were together, it melted my heart. He would snuggle into her and give her kisses, which is something he never did with any other therapist. Jess was everything the other physio's weren't- proactive. We worked well together to actively prevent future problems, rather than wait for them to develop.
This is my favourite photo of Jess and Max. You can see how much they adore one another.
Jess taught him 'protective reflexes' (ie putting both arms out when you fall) from infancy. Subsequently, he's avoided the bruises and black eyes which many 'hemi-kids' sustain. She taught us, the importance of falling (safely) when he was learning to sit/stand/walk independently. She explained, falling 'teaches' the muscles about where they need to start working and developing. She also showed him the safest ways of falling! She gave us comprehensive programs, which focused on his overall gross motor development. We did lots of stretches and passive movement to prevent his muscles from getting too tight. She taught Max how to make the transitions from lying to sitting and then from sitting to standing. One afternoon, I went through the 'sitting to standing' transition with Max and unleashed a monster! For days/weeks, he was obsessed with learning to stand up. I'd sit on the floor for hours, repeatedly showing him the transitions and being his human climbing frame. It took awhile, but he eventually mastered it.
With Jess' help, and a LOT of hard work, Max went against the odds and met every major milestone spot on time. He walked at around 13 months, when we'd be told to expect a significant delay. I'm 100% sure, none of it would've been possible, if not for Jess.
In hindsight, I now see, I was in a very dark place for most of the first year following Max's stroke. I was loathe to admit how much I was grieving, when I was so grateful my son was still alive. I had so many moments of wanting to scream about the injustices of life and sometimes I still do. Life was never as rosy as I painted it, everyone thought I was so strong and I could never admit how truly sad I was.
Before Jess, we had no other therapists, it was just me. Little ol' me who took a rapid crash course in child physical development and brain injuries. I put a lot of pressure on myself to keep him moving forward, I felt alone and frightened. I almost always felt like I wasn't doing enough.
From a metaphorical perspective, Jess held my hand and guided me through the darkness. She listened, she validated, and she never made me feel like the neurotic mother I knew I was. She never seemed to mind, my random emails, sent at random times about whatever concern had crept into my mind. She genuinely cared about Max, she always remembered his birthday and went out of her way to drop off a Christmas present she had bought him. For that period of time, she was the closest thing I had to a friend. She reduced the pressure I was feeling, and she gave me hope.
I wish he was looking at the camera here!
I'm not someone who cries, but there are tears streaming down my cheeks as I struggle to finish this post. I want to wish Jess all the best in her new job, I want to give back to her, what she has given to us. I want to say thank you, even though I know it isn't enough. How can you say goodbye to someone, when you can't even find the words to tell them how much brighter they've made your universe?
Thank you Jess. You taught us both to walk.
"because I knew you, I have been changed for good"
('For Good', written by Steven Schwartz for the musical Wicked)
In the days, weeks and months after Max's stroke, I obsessively read everything I could, about brain injury rehabilitation. I learnt, that early intervention was crucial for optimal recovery, particularly in the first 3 years of a childs life. Max was assessed for inpatient rehab, but wasn't accepted. On discharge, we had to wait 6 weeks before we had an assessment with the out-patient rehab team and it was there, we were told, they would see him again "once he was more delayed". I was pretty pissy about the whole situation and wrote this post Can anyone help?. I was inundated with responses, it took me months to follow up on every suggestion. Eventually, I received an email from someone who told me about an Allied Health service called 'SPOT for kids', specifically for kids with brain injuries. This is how we came to meet Jess.
For months, I worked extra shifts to meet the cost of having a private physiotherapist and we've since been granted funding for it. Max absolutely adored Jess, everytime they were together, it melted my heart. He would snuggle into her and give her kisses, which is something he never did with any other therapist. Jess was everything the other physio's weren't- proactive. We worked well together to actively prevent future problems, rather than wait for them to develop.
This is my favourite photo of Jess and Max. You can see how much they adore one another.
Jess taught him 'protective reflexes' (ie putting both arms out when you fall) from infancy. Subsequently, he's avoided the bruises and black eyes which many 'hemi-kids' sustain. She taught us, the importance of falling (safely) when he was learning to sit/stand/walk independently. She explained, falling 'teaches' the muscles about where they need to start working and developing. She also showed him the safest ways of falling! She gave us comprehensive programs, which focused on his overall gross motor development. We did lots of stretches and passive movement to prevent his muscles from getting too tight. She taught Max how to make the transitions from lying to sitting and then from sitting to standing. One afternoon, I went through the 'sitting to standing' transition with Max and unleashed a monster! For days/weeks, he was obsessed with learning to stand up. I'd sit on the floor for hours, repeatedly showing him the transitions and being his human climbing frame. It took awhile, but he eventually mastered it.
With Jess' help, and a LOT of hard work, Max went against the odds and met every major milestone spot on time. He walked at around 13 months, when we'd be told to expect a significant delay. I'm 100% sure, none of it would've been possible, if not for Jess.
In hindsight, I now see, I was in a very dark place for most of the first year following Max's stroke. I was loathe to admit how much I was grieving, when I was so grateful my son was still alive. I had so many moments of wanting to scream about the injustices of life and sometimes I still do. Life was never as rosy as I painted it, everyone thought I was so strong and I could never admit how truly sad I was.
Before Jess, we had no other therapists, it was just me. Little ol' me who took a rapid crash course in child physical development and brain injuries. I put a lot of pressure on myself to keep him moving forward, I felt alone and frightened. I almost always felt like I wasn't doing enough.
From a metaphorical perspective, Jess held my hand and guided me through the darkness. She listened, she validated, and she never made me feel like the neurotic mother I knew I was. She never seemed to mind, my random emails, sent at random times about whatever concern had crept into my mind. She genuinely cared about Max, she always remembered his birthday and went out of her way to drop off a Christmas present she had bought him. For that period of time, she was the closest thing I had to a friend. She reduced the pressure I was feeling, and she gave me hope.
I wish he was looking at the camera here!
I'm not someone who cries, but there are tears streaming down my cheeks as I struggle to finish this post. I want to wish Jess all the best in her new job, I want to give back to her, what she has given to us. I want to say thank you, even though I know it isn't enough. How can you say goodbye to someone, when you can't even find the words to tell them how much brighter they've made your universe?
Thank you Jess. You taught us both to walk.
"because I knew you, I have been changed for good"
('For Good', written by Steven Schwartz for the musical Wicked)
Saturday, 30 March 2013
Maxwell turns 2- part 2
A certain little guy turned 2 last week, a milestone which was celebrated over 2 big days and subsequently, 2 blog posts. If you missed part 1, you can read it here
The second celebration, saw us hitting the road and trekking over to the other side of the city, to a country town called 'Emerald'. This is where a century old steam locomotive called 'Puffing Billy' runs from. Except, on this particular day, the train was being pulled by *drum roll*...... Thomas the Tank Engine! Max is such a boy, he loves planes, boats, cars, motorbikes, diggers, tractors (etc) and trains. I was (cautiously) certain that a day out with Thomas would make up for the previous day.
The look on his face, when he saw the real life Thomas, was priceless. I've never seen him run so fast.
There were photo opportunities...
An animal farm...
In the Goose's defense, Max started it
A jumping castle....
And (of course), a big long train!
You come here often?
Just hangin' out with my Great Grandpa Maxwell Senior
Max was so over-awed when the train ride started, he promptly burst into tears. It didn't take him long though, to fall in love with the entire experience....
My parents had arrived early that day, so they 'reserved' us the best picnic table in the park. It was perfect, on one side of the table there was a playground and on the other side, the trains. I'm not sure if Max ate much of his lunch, because he was simply too busy!
We sang Happy Birthday (again), he looked bewildered (again), and threw his cake (again). Max had 3 birthday cakes over the weekend and he didn't have a single bite of one. (Note: next year it'll be gruel and water)
By the time we'd finished lunch, Max was getting grouchy, so it was time to leave.
One last snuggle with Pa
Goodbye Thomas, you did a great job!
We were only a few minutes down the road, when I turned around and saw.....
Fast asleep, after having the perfect birthday celebration, I'd dreamed of. I'm now the proud 'owner' of a two year old and Birthday celebration version 2.0 was a success. Now, I've had a few words with him about growing up too quickly and he's assured me, he won't turn 3 until I'm ready. About 10 years outta do it.
The second celebration, saw us hitting the road and trekking over to the other side of the city, to a country town called 'Emerald'. This is where a century old steam locomotive called 'Puffing Billy' runs from. Except, on this particular day, the train was being pulled by *drum roll*...... Thomas the Tank Engine! Max is such a boy, he loves planes, boats, cars, motorbikes, diggers, tractors (etc) and trains. I was (cautiously) certain that a day out with Thomas would make up for the previous day.
The look on his face, when he saw the real life Thomas, was priceless. I've never seen him run so fast.
There were photo opportunities...
An animal farm...
In the Goose's defense, Max started it
A jumping castle....
And (of course), a big long train!
You come here often?
Just hangin' out with my Great Grandpa Maxwell Senior
Max was so over-awed when the train ride started, he promptly burst into tears. It didn't take him long though, to fall in love with the entire experience....
My parents had arrived early that day, so they 'reserved' us the best picnic table in the park. It was perfect, on one side of the table there was a playground and on the other side, the trains. I'm not sure if Max ate much of his lunch, because he was simply too busy!
We sang Happy Birthday (again), he looked bewildered (again), and threw his cake (again). Max had 3 birthday cakes over the weekend and he didn't have a single bite of one. (Note: next year it'll be gruel and water)
By the time we'd finished lunch, Max was getting grouchy, so it was time to leave.
One last snuggle with Pa
Goodbye Thomas, you did a great job!
We were only a few minutes down the road, when I turned around and saw.....
Fast asleep, after having the perfect birthday celebration, I'd dreamed of. I'm now the proud 'owner' of a two year old and Birthday celebration version 2.0 was a success. Now, I've had a few words with him about growing up too quickly and he's assured me, he won't turn 3 until I'm ready. About 10 years outta do it.
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