Let me preface this that William is currently well as can be expected. However having a child who is deemed to have a terminal genetic disease opens up all sorts of questions.
Today Bec and I met with a doctor who we highly respect that helped us with Sophie and we sought out his services but also his care for our dear boy William.
It was a conversation that was honest, confronting and somewhat brutal which is what we love about the particular doctor.
We laid everything on the table, we cried, he comforted us, he spoke about all possibilities of how he could help William but ultimately the conversation came to do we have a plan in place should William need what is deemed life saving measures.
It would be easy for me to look at my life with William and think of poor me, poor us as a family but I look at it so differently, I look at it that I was chosen for this journey despite its difficulties, challenges and the emotional rollercoaster that comes with it.
His recent hospital visit the doctors had to make what is deemed life saving measures, they made quick decisions to get the necessary drugs into him to help him fight his septic blood and get better. They did this by drilling directly into his leg bone as his limbs were shutting down. My only thought at the time was to give him the care he needs but at the same time the care he was needing was critical of nature, it was scary, it was confronting and as parents our hearts break for his suffering.
We have known of the possibilities with William from 4 weeks old, I wish it wasn't so and my god I love him so much. I cry at just the thought of him, he is so bloody special.
Imagine for a second being asked to come up with a plan of what we want for WIlliam or any loved one for that matter in the event of certain situations happening. Think cardiac arrest, brain issues, the list is endless. I admit I have found this confronting, it has consumed my thoughts and I am left asking the question how do I prepare for such a thing. How does one prepare themselves for death or having to make such a decision at a critical time. I want my boy with me forever but most of all I do not want him to suffer in any way. His short life has been so challenging thus far and we know we have challenges ahead.
I do not expect answers from you all, I guess I just needed to write this for me because today was tough to hear, it will be tough to document and one day it may be tough to make the decision.
Thanks for reading.
OK Wow, I think I watched you doing WA iron man with my partner who uses your gear, but I am touched by your .. I dont know just touched.
I had a boy, not mine but a previous partners sister that could not cope. He became ours, we looked after him, he had retina blastoma and it went to the brain from the optic nerve. Charlie Teo did amazing surgery while playing ACDC and was able to remove the tumor but I cant tell you how many hours and days and months I spent at Westmead Children's hospital. I moved in.
I learnt to give injections etc. I worked from his bed side. We would go out on weekends…
It is so tough to even read it, let alone to go through it. I send you love, patience and health to deal with this stage of life. I would get the help from inside me to help make the decision and always put William first in any decision I would make.
Thinking of you and family, mate.
Jason I
My thoughts, prayers & love go out to you, Bec, Sophie & of course, wee William - the fighter xxx - Nikki Van Winden
Thoughts are with you and Bec. It must be heartbreaking and so hard to deal with. He's a gorgeous little fella. He has a beautiful family around him, right now that's what matters; your love, your time and your hugs. Thinking of you.