Crying about our boy is something we rarely do anymore. We have learnt that tears don’t help him, doing does. And so we have become accustomed to just automatically tell Roki’s story like it was something that is just part of everyday life now. On Monday we started Roki’s intensive home treatment program, I needed 30 volunteers to make this happen, seven days a week. On Monday I still needed 20 and I had no idea how I was going to fill the spots. Some very generous mothers offered their help who saw my post on Face Book and that’s how we met Blema.
Dave and I just blurted out Roki’s story and told Belma what to do, not even explaining that he may have seizures of he may cry at certain times, we had no idea what effect it had on her. It wasn’t until I read Belma’s words that she posted on Face Book that I realised just how the world sees Roki and what an effect it may have on people. That sure made the tears come back. One gets very good at putting those emotions far away when you are on a mission to save your son.
I thought it fitting to share Belma’s words, thanks to her I have now almost filled all the slots on Roki’s volunteer time table. The impossible became possible. Curing my son from brain damage is possible because he stands tall on the shoulders of people like Belma and everyone like her who have walked though our door to help Roki.
MY HOUR WITH ROKI
Yesterday I saw a post on Northern Beaches Mums, from Ina, looking for volunteers to help her boy Roki. I had heard the name before, but was guilty of skimming past posts and stories about him, as sometimes it is just easier to ignore the sorrow around us then deal with it directly. I am sure others are guilty of the same.
I briefly read that Roki had suffered brain damage and was diagnosed with cerebral palsy. I was happy to help where I could, so had committed to spending an hour helping Roki today, with no real concept of what that actually meant or entailed.
When I arrived, I was greeted by Ina and her husband Dave. It was then I laid eyes on Roki for the first time. A sweet blue eyed boy, with a mop of blonde hair, lying limply on the couch. It was evident he had just celebrated his second birthday, as balloons and streamers with the number 2 where sprawled across the house. From my perspective, he was unresponsive. He lay seemingly lifeless, with his eyes rolling in the back of his head. I tried to keep a smile on my face, though my heart had already started breaking, seeing his tiny body slumped there like that. I had mentally drawn the conclusion he was in a vegetative state, that he had no concept of what was going on around him. But the next hour showed me there was life waiting to burst from that tiny soul, and I was there to help it happen.
Ina and Dave have travelled to the corners of the world to help their boy Roki. They have devoted their whole life to him – every second of every day. I actually mean this – every second, of every day. There are timers situated in various parts of their house. Exercises to help Roki need to be done repetitively, some upwards of 45 times during a single 12 hour awake period. Stop and let the magnitude of that sink in. For Ina and Dave, this is 5 minute intervals, all day, everyday, for as long as it takes for Roki to get better. This could be years.
I was there to help with some of these exercises. I was nervous, scared of hurting him, my heart was racing and I was holding back tears. Ina and Dave where casual and cool – this was everyday life for them.
The exercises involved having Roki on an elevated platform and manipulating his body into repetitive movements, to help his brain connect and understand, in the hope that one day, he will be able to do these movements alone. Doing these exercises requires 3 people. Some exercises made him coo, his parents understanding the joy he was expressing. Some made him upset, the overstimulation making him cry. They would say things like ‘he likes this one’, and I started to see that he could understand what was coming, what was going to happen next. He would smirk in anticipation, or fear, and he knew when the time was coming for his favourite exercises, or for his cuddle with mum.
Oh, there was life there, it was shining through his bright blue eyes, and all I needed was an hour with him to see it. His little personality was becoming more and more evident. Like any child, there where things he liked and things he didn’t.
The love, pride and devotion Ina and Dave have for this tiny human has absolutely floored me. Roki has a big sister, Ruby who is 3.5 and he is going to be a big brother in 4 months time. This news blew my mind. How are they going to cope? How will they handle a newborn baby, with everything they do for Roki? The exercises, the travel.. I could barely handle my newborn baby and he was an only child! But they will handle it, because that’s just what they have to do. The kind of resilience they have has left me astounded.
Leaving their house today, I had this fire burning inside of me, this overwhelming urge. I NEED to help this family. I need to get their story out there. They need the help of our community.
So here I am, writing this post, as I shed tears for a family whose life has been turned upside down by a complication that happened during labour. It has hit home, as I look at my healthy 8 month old baby boy, that this could have happened to me. He suffered brain damage from lack of oxygen at birth. This could also have happened to you.
I beg you, please please please help this family. Commit to one hour a week, to help bring out the life and soul that is currently hidden because of his ‘brain damage’. There is a sweet, gentle young boy who you can help. Do it with a friend, if you have teenager, they can help too.
Yes, it is confronting, it is emotional, it makes your heart hurt. But it is oh so worth while, for that sweet little boy, with bright blue eyes.
Roki, you have me wrapped around your perfect little finger. See you next Monday.