The doctors initially got Bede’s pain under control and he settled so long as he was sleeping on one of us. Although then we lost control and are on nearly double the maximum allowed dosage of morphine, we seem to be getting it under control again now. Mainly he just wants to be on his mumma’s chest or swaying in his father’s arms. He’s on a number of meds including ketamine, morphine and panandol, as well as oxygen because the pain meds interfere with his respiratory drive.
He’s been struggling with his breathing a bit. Everyone is working very very hard to ensure Bede is comfortable. His consciousness isn’t high so we are putting all our energy into making him feel loved and feel settled on an emotional level.
The doctors still felt yesterday and today that we could buy bede some more good quality time and that he would come back from this. I’m not being negative but I’m just not convinced. My deep sense that we are losing him pervades. I feel like this is what his death looks like.
Bede’s light as always is undimmed. He’s not smiling and his eyes are not open often. He snuggles into me and his soul fills the room. His grace, his weight, his light hang gently in the air. It is not his job in this moment to uplift any of us. It is his job to be soothed and loved and seek comfort from his mum and dad. His essence as always is all encompassing.
He is 5 months old today. I woke up after a couple of hours sleep feeling so happy and just deeply thankful for every beautiful light and love filled moment I have had with his warm, joyous, kind soul. there are moments I do feel scared. I don’t want to miss him. His weight, his love and his breath.
I am also posting because we wanted to send a massive thank you to all the people who have taken the time to show your support over at www.wishes4bede.com
From the bottom of our hearts, thank you. We are humbled, so very humbled by the love and care all our supporters have shown over this time.
For those not in the know yet wishes4bede is a website that some of my cousins set up as a way of showing love and supporting us despite the miles that separate. In the websites first 24 hours there has been a massive show of support. So many wishes made. That support has lifted us and relieved us and fortified us in some of our toughest times yet.
Those in my family know I have always taken comfort in coming from such a large and diverse tribe. This website has made me aware of what was surely always true that despite the fact so many of you have never met Bede he counts, he is still one of us, one of the tribe. Part of our whole massive family and that has brought me so much comfort.
As is the case here, there are people we have never met leaving Bede wishes. This also brings us so much comfort. The whole purpose of this blog was so that bede could be known and make his mark but even more basically just exist within his context. He is here. He matters.
For those of you helping me give this gift to my son I am so deeply thankful and eternally in your debt.
I know I always say it but please send him your love. IF this is
him slowly leaving us lets encase him with love and light. Lets wrap him up in care and warmth and tenderness. This is the moment to pray that bede, whatever the next week brings, has some peace even if we do not.