Most diagnosis meetings we've had have gone a bit like this...
‘We won't know how it will affect him so we'll just wait and see...’
Right at the beginning, when I was around 28 weeks pregnant during a scan, Zachariah's brain was seen to have clearly stopped developing.
There we parts missing and other parts not quite formed properly.
Termination was spoken over us too many times to count as we were told our Baby would not survive or would live a very limited life.
Once we made it very clear we were continuing with our pregnancy they began to tell us they could not tell us what life Zachariah would lead.
It is was unknown and there were lots of unpredictable outcomes. This kind of conversation was one that would continue throughout his life.
When he was born the diagnosis journey began. Every meeting, test, therapy came with something new.
First, it was he was blind.
“We will never know what Zachariah will see”
Then it was Lissencephaly
“We do not know what he will do.”
“We do not know how long he will live.”
Then came the Scoliosis
“His curve may worsen, and surgery is more likely than not, but we will just have to wait and see.”
Then somewhere amongst the chaos came the diagnosis of dislocating Hips!
Despite the early intervention of physiotherapy and equipment, Zachariah's hips have been gradually dislocating, so much so that over the last few weeks the left hip has completely dislocated and is causing Zachariah so much distress.
After an X-Ray and consultation, it has been decided that an operation may need to happen sooner rather than later if the pain doesn’t ease.
With Zachariah being non-verbal and already a very unhappy boy when being changed, it can be challenging identifying the pain, however, the last week has been incredible pain that cannot be missed, he's screaming and flinching.
It has been awful to witness such discomfort that I cannot sit around. I’m hoping that with a few more professional opinions we can create a plan moving forward.
I feel like our future has come too quickly. I remember his physio telling me she was concerned and had referred him, and I remember the first consultation with the Orthopaedics too well as it really wasn't that long ago.
I remember him telling me that surgery may be a thing of the future but that is in the very far future.
why is it that when Zachariah is just short of 5 years old, we are having this conversation. What happened to the waiting the room, the observations.
It all feels like we’ve been fast forwarded… Where’s the pause button!?
Help! I can’t breathe!
It has no doubt become all too much for me, and it’s clearly too much for Zachariah.
We feel unequipped. We feel like we’ve entered such an impossible road. We feel it’s all happened so flipping fast.
One minute it all laid back and what-ifs, the next I’m witnessing my son go through something so painful and cruel.
I remember a similar, less severe panic when Zachariah suddenly declined during meal times and we desperately needed to get a Gastrostomy. I remember the anxiety about surgery and the newness of it all.
Now... Hip surgery is a whole new level, so you can just imagine my overthinking brain right now. It’s just too much!
The future can be an exciting yet scary time.
It can be unpredictable and sometimes too much to think about. I have started to learn how to manage my emotions whilst thinking about the future and tried not to dwell but focus on the possibilities.
I feel Drs have tried to guess one too many times with Zachariah and wanted to predict his future, but in the same breath, they have been quite blasé about it all with their vague explanations.
It’s very confusing and distressing. It’s much more healthy to talk about happy things, please read my next blog to hear the high and the shrieks :).
My Daily Miracle xx