Thursday, 1 December 2011

Today, exactly 6 months ago, it happened

On the 2nd of December, 2011 it will have been 6 months since Max's stroke. Why is it that anniversaries unleash such a strong flood of memories? My emotions are pretty mixed up. I am triumphant in celebrating, how much Max has achieved in that time. But, I am also hurting and grieving over everything my little boy lost that day.

(This is the last picture of Max, before the stroke)

June 2nd, 2011, is a date that will forever be etched in my mind. It's the day that I stopped being your average first time mum, to a healthy baby boy and joined the 'special needs crowd'. On that day, the possibilities were so frightening, that all I could do was pretend they didn't exist. It was a day, where I felt completely and utterly useless. I couldn't help my son in any way, all I could do was sit by his cot, hold his little hand and pray.

It was sometime between 6am and 9am that a blood vessel in his brain burst. There were only subtle signs that something wasn't right. He didn't have a temperature, he didn't have a facial droop and he had fed well at his last feed. He was just a little bit grumpy, a little bit pale and a little bit sleepy.
I've written about this day in more detail but I can't link it back using my iPhone. If you want to read more, look under the June/July archives

So many people told me that I was so strong throughout Max's time in hospital. But, I have a confession to make. I'm not strong at all. When we arrived in the Emergency Department, all my defense mechanisms were triggered in full force.

I was completely void of emotion, when Max's little body was lying on an examination table, gradually getting hooked up to more and more machines. I couldn't allow myself to lose it, when the doctors needed me to provide his history. When they 'bagged him', I believed the doctors when they told me they were just giving him 'a little bit of extra oxygen'. I know now that he was in respiratory arrest.

I entered that dissociative state of mind, almost instantly. That wasn't my son, lying unconscious on the cold hard bench. It was all just a reality TV show that I was sitting back and watching.

Denial played the biggest and most important role in maintaining my sanity. Any scary or negative thoughts were quickly pushed away and replaced by positive ones. The only positive thought I could muster up on that day was "at least we're getting free nappies!" I know, it sounds pretty ridiculous. At the time, I thought it meant that I was a bad mother, but now I realize that my mind was protecting me. If I'd truly felt the magnitude of emotions that day, I'd have been lying on the floor wailing and not much good to anyone.

Over the last 6 months, I've gradually started facing these emotions. I've had good days and "why the hell did this happen to him?" days. In preparation for writing this post, I borrowed the photo album that my mother is making for me. In the album, there are photos of the first 10 weeks of his life, when things were 'normal'. Then there are photos of him in hospital. I didn't take many photos of him in ICU because I didn't think it was a time, I'd want to remember. It's still not a time that I want to remember, but it's a time that I have to remember. It is time for me to move forward, confront the pain and put 'that day' on the shelf.

One night last week, after Max had gone to sleep, I sat down and held the album on my lap. It sat there for awhile, as I procrastinated and did everything I could to avoid opening it. But a fear cannot be conquered by avoidance, that only makes fear grow stronger. So, I took a deep breath and opened the first page.....

As soon as I looked at the first page, I cried.....actually, I howled and screamed into a pillow. It felt like I'd been stabbed in the heart. Looking back at me was a picture of me, Rob and Max, taken the day after he was born. Even though it was only 8 months ago, Rob and I looked so young, so innocent and so blissfully unaware of the pain we would later endure.

Here is a picture of Max in-utero from my 20 week scan. He's 'waving' at us with Mr Righty. I could never have known at the time how poignant this image would become.

Every time I turned a page, the stabbing pain followed, as well as more tears and more howling. Finally, after almost 6 months, I was playing the role of the 'hysterical mother'. But, I was playing that role, in a space that was comfortable for me. There were no prying eyes of medical staff, waiting for 'mum to break down'. There were no social workers or pastoral carers, trying to interrogate my emotions on a daily basis. It was just me, alone in my grief and just the way I wanted it.

I'll show you some of the images now. I don't want to upset anyone, rather, the opposite- I want to inspire someone. Maybe someday, a parent who's child has just had a stroke, will stumble across this blog, gain hope and realize that miracles really can occur.

These are pumps with (almost) all of the medication he was onThe yellow bag, is one of 94 platelet transfusions he had during his admission.

So puffy from all the steroids, IV fluids and transfusions. His left foot is purple from his blood pressure being taken repeatedly in ED. So many tubes and wires

Maxwell and Me

His toys came in handy to keep the ventilator in the right position

This is a 'photo of a photo'. When Max was waking from the coma, he was so distressed but when he cried, just a tiny squeak came out. I'd successfully managed to repress the memory of that pitiful cry- until I saw this photo. Horrible doesn't even come close to describing those moments (The nurse in the photo was so great)

Again, waking up from the coma.

I could go on and on about the lessons I've learnt in the last 6 months, the perspective I've gained and the wonderful people I've met. But I won't. Instead, I want to say thank you. Thank you to everyone who has sent me encouraging messages of support. Thank you to everyone who has read and shared this blog- you have helped me find the support and services I need for Max. And thank you doesn't seem to be enough for my family- my two sisters, my mum and my dad. To Kylie, Simon, Tara, Mum and Dad, thank you.

The biggest thank you of all though, goes to Max. He is my hero, my best friend and without his beautiful smile, I would sometimes struggle finding the strength to keep going.

Thank you Max, you are my everything.

Posted using BlogPress from my iPhone


  1. What a lucky boy Max is to have you as a mother. That post was so beautifully written. I'm sure Max will come to read it one day and be full of pride and admiration for his wonderful mother which I'm sure he already feels in his little heart and shows you each day with that beautiful smile.

  2. Another beautiful, emotional, tear jerking post. What an amazing journey. I have followed your journey from the start via Kylie and the love and concern she had for both of you when Max had his stroke.

    You should be exceptionally proud of what you have achieved you are an awesome team!

    Keep up the good work and keep moving the goal posts and show all those drs what you can do.


  3. Faith, I am beyond words. I may live halfway around the globe, but you manage to bring me to tears every time with your honesty. One day, my dear, we will meet face to face. Thank you for allowing me the privilege of sharing a small part of your journey. Max is one lucky young man. Who would have known when my granddaughter was diagnosed with ITP that such a wonderful person would enter my life? All my best to you and Max.

  4. Faith, your post bought me to tears .your are one inspirational lady and Max is our Hero.I am so proud to say i know you and have travelled some of the journey with you through our talks. You and Max have done an amazing job so far,max continues to amaze us with his progress and his cheeky smile xxxxxxx

  5. Max is truly lucky to have you as his mum. and he is just adorable. xx