Tuesday, 21 February 2012

Five Hundred, twenty five thousand, six hundred minutes.

On the 22nd of February, Max will be 11 months old. Only a month away from the big ONE. We're having a party, that my family has organized and I haven't done a thing to help. Not because I'm lazy or disinterested, I just feel sick thinking about it.

Max's birthday party is a celebration of his strength, determination and ability to inspire people. He's an amazing little man and he deserves to be worshipped by everyone who loves him.

But I'm a little bit sad. On the 22nd of March, 2010 I met my little boy and he was perfect in every way (although he looked like a slimy, purple frog). When I held him for the first time, I apologized for comparing him to an amphibian and promised I'd give him the universe. At the time, how could I have known what the next 12 months had in store for us?

I had 10 precious weeks of being a 'normal' mother with a 'normal' son. 10 weeks where I cuddled him all day, despite people telling me I'd regret it later. I've never regretted it. Max hated cuddles after the stroke.

10 weeks where Max and I caught up with friends for coffee. 10 weeks where I indulged in Internet shopping, looking for punk rock baby clothes. In those 10 weeks, the most emotional experience was getting his immunizations.

*please don't berate me for using the word 'normal'. Babies having strokes is not normal


Strategically placed dignity duck

The 2nd of June signaled the end of being a normal mummy. There were no more playdates only medical appointments. I didn't shop for cutsie baby clothes anymore, I shopped online for therapy items. PTs and OTs became the closest friends I had.

have you ever tried finding the perfect sippy cup for a hemiplegic baby? We're currently trialling the sixth one.

I hated going to baby music group, it was impossible not to be jealous of the other babies and their two functioning hands. I hated how they were meeting milestones without hours of therapy. Most of all, I hated their mothers for giving me sympathy eyes.

I hated myself for thinking "this is not the way it was meant to be". It wasn't fair, why him? It's a cruel irony, that the biggest fear I'd previously had, was Max sustaining a brain injury. My biggest fear and it happened when he was only 10 weeks old.

Every dream, I held for Max's future, disintegrated on that day. The dreams became nightmares, full of 'worst case scenarios. I stopped dreaming about his future and started living day to day. It's going to take years before we can truly understand the full extent of his injury.

Max's looming first birthday, is a testament to his courage and strength. He has endured far more pain then an infant ever should. He deserves to be spoilt rotten

For me? It hurts like hell. Almost 12 months ago I held my little boy for the first time and promised I'd protect him forever. I failed.

I love you so much Max


  1. I wish I could say I understand, but even though my granddaughter fights ITP, I will never truly know how you feel. I admire you. I love and admire Max from half-way around the globe. I cheer for your victories, and cry with you. You haven't failed, my sweet. You just haven't won in the way you expected. You are winning every day. For that, I thank you.

  2. Hi Faith: You haven't failed. I have children with health issues that needed daily management and I do myself, but nothing like what you and Max are experiencing. I know for me, managing daily life others take for granted, can be difficult, frustrating, anger provoking, exhausting, add almost any other emotion. I can't imagine the energy you've expended this past year just maintaining daily life for Max. You've accomplished a lot and you haven't failed. Where would Max be without your love and attention?

  3. Failure would be letting him down. You have succeeded with a heroism only a devoted mother could achieve. You fight daily for him - not only to help him develop as best as he can, but for him and all the other Maxs - and their parents - in the world. You would do anything to save Max from pain and suffering - you ARE doing everything possible. I admire you so much.

    I am a disabled parent (severe spinal injury, car accident), and all I can think, when the pain gets too bad, is how LUCKY i am it wasn't one of my kids. I wish there was more i could do than offer my admiration, publicise your petition, and wish you all the very best.

  4. You have not failed. I dont pretend to understand everything you are going through or the pain and grief - but I can say that only a mother as amazing as you would fight, rally, write, protest, research, do therapy, etc etc to protect her son and give him the best possible chance for his brightest future. I know this is not the path you imagined, but you have not failed your son. You are his saving grace, loving him and caring for him like no one else ever could. Be kind to yourself, mama xx