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)
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