Norfolk mother Kyra Welch, writes about her experiences with her terminally ill four-year-old son Kaiden Griffin.
Kaiden, who grew up in North Creake, near Fakenham, now lives in Holt and has an abnormal heart, lungs and veins. The situation is too complex for him to undergo an operation.
Here, Kyra shares her story.
I remember one of the hardest parts of our journey with Kaiden was in one of the meetings with the palliative care team.
I had one question I'd been wanting to ask someone for so long but I couldn't bring myself to do it. Every time I tried it got stuck it my throat and the words wouldn't come out.
On this one particular day, I'd been running through in my head about taking deep breaths and just asking what I wanted to know - what I needed to know - and then it came out.
'When he goes, will he be in pain?'
I had tears rolling down my cheeks before the words had come out and it felt like my heart had been crushed inside of me when I asked it - but I needed to know. I needed to know that when my little boy took his last breath he wouldn't be in pain.
The woman from the palliative care team ran through with me what would more than likely happen when it got to that stage and the tears turned into floods. I couldn't help myself.
Hearing this lady talk about it made it seem so real. She made it seem like any second of any day it could happen, and in reality it really could.
Part of me felt relieved that after months of worrying about asking this question, I had my answer. What parent should have to ask such a question though?
Still, the thought of asking anyone else that question breaks my heart.
Asking made me realise that as much as Kaiden acts like a normal child, he's really not. It makes me realise that every day I drop him at school I might not get to pick him up, or every night he goes to sleep he might not wake up. It just makes me realise that as much as I try and put all that part of my life to the back of mind, it's always there.
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