I have been thinking a lot of my own grief, others grief and what it all is about in this whole process. How I've transformed and how others have also. We are never as we were before and that can be frustrating for us and for those around us. We loose friends, relationships we had once prior are no longer because we learn what truly is important. Sometimes others just can't be around us. Part of the process.
Too many infants are still loosing the battle to congenital diaphragmatic hernia and it is frustrating because ten years ago, the stats were the same these children over all have a 50% chance. I hate it when parents have to walk down the same path as we did ten years ago. I cry – I wish I could go to the ends of the earth and just give them a hug. I know all too well what it is like to receive a hug from someone who also had their young child die. No words are needed – it is a silent knowledge and comfort. Though both wish neither had the experience – we are thankful we are not alone.
The first few years – parents and families grieve hard – some do it for months – hard, some do it for a period at first and it gradually ebbs. The first few years – people should be kind and not make any judgements. Until you have walked that path, you don’t know and all grieve and react differently – respect that. Only if someone is continuing to deeply grieve – that is depression and you need help for that.
Over the last few years – I also have discovered a technique which wasn’t available to Cecilia – and it explains why she ended up on ECMO. When she was born – vent immediately at the highest setting. (They don’t do that now – there is a gentle vent technique – which became widespread a few years after her death.) I now know what put her on ECMO and caused the lung bleed. We don’t have do-overs. We can wish, would have, could have, want to but in the end – we don’t have that – we have to accept what is – is. That takes time. I’ve far passed that time.
So – grief is individual but if it goes on too long – see someone you trust to help – it isn’t weak to ask for help, it actually is a sign of strength. For those trying to help us through our grief – be kind – be open minded and just be there – but also know sometimes we want to be alone too. It is hard because this is something no one can fix and nothing will ever make it right. An injustice of life we have to live with and learn to live without. We want more than anything to be sure that our child’s case helps others survive. We want no one to go through what we have – and it isn’t because we feel we deserve it or that others do not or we want to be the one and only. The pain we feel and felt – like no other pain – and you wish that pain on no one – ever.
Life is supposed to make you better, not bitter - and our experiences in life too - if they are learning to live without and move through this life to make a difference.
