It was quite a long time ago now that Zachariah was diagnosed with scoliosis (curved spine).
It was something else that was accepted, but there was hope that it would stay flexible and could be straightened back into place through therapy and equipment.
There seemed to be no major immediate concern, and we were told that it would be monitored through x rays.
The x rays were a difficulty in their own right, I remember our first trip the spinal consultant, being sent round for x-ray, and being mortified by the huge, hard chair type thing that Zachariah was expected to sit on.
It seems to be an issue throughout the hospitals…the lack of appropriate equipment for those with severe disabilities, those who depend solely on a carer to lift and put them into new positions.
It’s the same when we visit clinic, and we are expected to put Zachariah on our laps upon the scales to try and get the best possible reading of his weight.
It’s just not safe, nor is it practical. I do wonder how they manage to weigh and measure older children, and even adults.
Anyway, coming back from my little drift, once we’ve managed to prop Zachariah into sitting position, trying our best not to prop too much, as after all, we’re trying the get an image of his scoliosis, we head back round to clinic and await our turn with the consultant.
In the past these consultations have been, as I’ve touched on above, fairly easy to digest, it’s a ‘we’ll wait and see’ kind of conversation.
There’s been a positive vibe that Zachariah's spine may fix itself slightly to make it less of a problem.
But last month... 13th April, I sat in the room with Zachariah and my Auntie and received the news I had dreaded.
‘We need to talk about surgery Mum’.
As after 4 years of meetings with different Doctors and Consultants, I have gotten used to keeping my meeting face on, a face that stays unemotional, a face that needs to stay straight in order for the brain to receive the information that's about to be shared.
I nodded and listened so intently to what the Consultant had to say, it is fascinating how incredible these people are and what they can achieve to make your child's life better.
He explained that there are 2 types of spinal surgery, but only one that he felt appropriate for my son… the rods.
Now I won’t pretend that I knew exactly what this meant, but he assured me that it’s extremely successful, they put some rods in the spine to help straighten it, they then need to be monitored every 6 months as the child grows.
Sounds so flipping simple when you type it out!
But as every surgery has, this surgery comes with risks.
One risk is Zachariah's health declining, so to help with this, we are being referred to respiratory team to give Zachariah a good check over on the lungs and general health to see if he’s well enough for the surgery.
So much information once again.
No surprise though, as I walked away I burst into tears, it was too much this time, my baby needing such a huge operation was just too much!
I wept as my Auntie comforted me and heading round to the cafe for some much-needed refreshments.
I tried talking it out and tried understanding it, but my emotions were too strong to allow my mind to think.
It’s so easy for people to say, ‘it’s for the best’ and ‘it’ll be ok in the end’, but when it’s your baby, you need to allow your emotion to take over and give yourself time to process it in your own way and time.
We need to be kind to ourselves and not rush through things, just because the world says we should.
My Auntie knew this, and got it, she told me how important it will be to talk with Tim when we got home and spend time together being upset, but then also looking at the benefits and making that decision together.
Even though it still doesn’t sit completely right with me, now I’ve had 3 weeks to digest it all, I can see how much it is needed for Zachariah to have the chance to live a longer, healthier life.
I know it’s for the best and is muchly needed before the spine begins to affect the organs, especially his lungs.
I have now found a new hope that this surgery may bring the goal of Zachariah sitting unaided back into the picture.
This one visit to the hospital was a huge challenge that we are overcoming, it reminded me how complex my son is, and how much he relies on the care of loved ones and the expertise of professionals from the wonderful NHS.
I wrote this blog to document this huge news, and to share with you a day in Zachariah's world. I really hope this helps someone too.
Rochelle (My Daily Miracle)
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