The Graduate

Those of you who are regular readers of Maxwell and Me, may have noticed, it's been awhile since I've written any updates on here about Max's progress. I apologise for this and I assure you, there has been a lot of progress since I last wrote about it in this post . It's a difficult topic for me to write about, because I want to convey how well he's doing but I also want to be realistic about how far we have to go. It's also a bit depressing when I write about achievements, only to see him refuse any form of therapy and slide back.

When people hear, my son had a stroke, the most common response is "but is he ok now?". Erm, define "ok". Do you mean "will he have another stroke?" (unlikely unless platelets drop again). So yeah, he's ok. He also breathes by himself, he's not attached to machines, he isn't having any seizures and he isn't fed through a tube. His right hand is hardly ever in a fist these days, he's intelligent, social, loves to jump (recently off furniture) and he runs like the wind.

Or do you mean "does he show any signs he had a stroke?". The answer to this, is "yes" although, we're very pleased with all the improvements he's made. He does have a squinty eye, a slight limp and a hand which doesn't work properly but he's ok. He drops things alot and he struggles a lot with two handed activities. I never realized just how many tasks require two hands, even coloring is difficult because righty isn't strong enough to hold the paper still. His language is a bit delayed, he needs surgery to his eye and Botox in his hand/wrist once he's older. 

Most people don't want to hear the latter and are quick to try and remedy the awkwardness by telling me how adaptive children's brains are (No way. Really?) or the good ol' "he'll get there". I don't mean to sound like a snarly, sarcastic cow but it just starts to grate after awhile. It's true, infants brains are remarkably adept, we are lucky the stroke happened at a young age so we can utilize Neuro plasticity to its full. However, we can't perform miracles. A fellow stroke mum, summed it up beautifully in these words "it doesn't matter how young you are no one survives a stroke unscathed". 
(Note: Sometimes it's ok to just say "that's shit" rather than state the bleeding obvious)

I often think back to the day of Maxs stroke, and it sends shivers down my spine remembering the absolute terror I felt. The first few hours were hell. Waiting for various test results was the worst part. Outwardly, I was calm, inwardly I was screaming and throwing myself on the floor. I kept wishing I could cry, I should've been crying, I'm not sure why, but I couldn't. I often wonder if the nurses thought I was a heartless mole.

When Max was 7 months old, he started doing the Snowdrop Program for Brain Injured Children. I could explain what it's all about, but since I'd only be rehashing lines from the website, here's the link to the website instead Snowdrop. In   Lunch Today will be Roast Beef with a side of Vestibular Stminukation. I wrote in depth about some of the therapy I do with Max. 

When he started the program he didn't even know he had a right arm, he was disinterested in the world and he was so spaced out, I could bang pots and pans a meter away and he paid zero attention, even though his hearing was perfect. After only a few months, he was alert, motivated and surprised everyone by crawling! Although he was aware of 'Mr Righty', his arm had no co-ordination whatsoever, occasionally he'd reach for things and miss it by yards. Nowadays, he has pretty good accuracy using righty to pick things up but his fingers are so stiff, and his muscles contract at all the wrong moments.

Max recently had his latest assessment with Snowdrop and he's now classed as 'developmentally superior' in many aspects. One amazing day last week, I got the email from Andrew informing me that Max had graduated from the Snowdrop Program. We will still stay in close contact to keep working on Mr Righty but we'll no longer be doing the full program. It's a pretty phenomenal feeling to know we've come such a long way. I speak online with some of the new parents online, people who are standing in the despairing place I once stood. 

In closing, I want to share with you, a snippet of the email from Andrew. I'm proud as hell of Max and I'm so proud of myself for not giving up, although many times I wanted too. It's true what they say. You don't realize how strong you are, until being strong is the only option you've got.

This was the day I decided on a trip to the UK. It's isn't gunna be easy (SO expensive!) but somehow we'll get there. Andrew gave me back my son, the least I can do is thank him in person.

Dear Maxwell

Dear Maxwell,

Next month you will be turning 2 and I'm already churning out the usual one liners about how fast the time goes. I can scarcely believe you're turning 2 already, yet at the same time, it feels as if you've been here forever.

You are oh so stubborn and you don't like authority. You were always going to be this way. No offspring of your Father and I was ever going to be a passive observer. You always manage to succeed in getting me to change my mind, when I've said 'no' to something. I don't like that, but you're so unbelievably persistent and you wear me down. There's only so many tantrums I can handle in a day.

You pick some real doozy moments to have a meltdown. You hate me holding your hand to cross the road and you often throw yourself down in the middle of the road. When I try to stand you up, you pull the old jelly legs manoever, so I have to scoop you up and carry you, whilst avoiding oncoming traffic. You don't do this to your father.

You're a social little butterfly and you love to make people laugh. It's one of my absolutely favourite things about you. It's when you're playing the clown, that I see myself in you the most. I think these pictures say it all.....



Tissue box foot



It's bath paint. (baby Dexter)



I was changing your clothes at the beach, you did a runner when you saw a train and paraded around like this.



You crack me up


Yes darling, that's a fantastic mess you've made. 3 cheers...



Jim's Cleaning



This is not how we use the DustBuster.



The Tin Man



You try so hard to help out around the house. You love to sweep, vacuum, wipe down benches and brush my hair. In actual fact, you spread the crumbs all around the kitchen when you sweep and doink me on the head when you brush my hair, but I always say thank you because you've tried so darn hard to please me. You grin proudly when I do.

You really enjoy seeing me flustered, you laugh hysterically when I'm angry. If I say "no" or tell you to stop doing something, your eyes light up. Then you'll repeatedly do what I'm asking you not to do, until my brain explodes.

You absolutely adore any type of reaction, so lately I've tried my best to keep my poker face on whenever you're trying to incite me. To complete strangers, it must look as though I don't discipline you. How are they to know that 'discipline' only reinforces the exact same behaviour we're trying to ameliorate?

Your immune system still hasn't recovered from the treatment you had in 2011 and you get sick all the time. You were the youngest known person in the world to have the treatment you had and the doctors have no idea when your immune system will recover. You've become very adept at blowing your nose, if I say the word 'boogers'. You also blow boogers at inopportune moments, ie. no darling, I said give Nana kisses not boogers.

In June 2009, my universe was blown apart when I saw this....




I'd never been so afraid in my life.

You were 6 weeks old when we saw you for the first time



My perfect little jelly bean

At 20 weeks, we discovered you were a little boy and mumma breathed a sigh of relief.


My first view of 'Mr Righty'. I could never have known, how ironic this picture would later come to be.

The doctors said you were 'Macrosomic' (ie 'really big'). We jokingly called you baby Shrek and I was freakin terrified of giving birth to you.




It's been nearly 2 years since I first held you....





....and ever since that day, I've wondered how I ever lived without you.


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