Just needed to offload as I am fed up with being brave!
My little girl is nearly two and a half, and we spend all our time being brave, looking on the bright side - she has a condition which normally has a very bad prognosis (days to live) so she is doing great. She is a happy little girl, but her development is very delayed - she is working towards sitting unsupported so can’t yet crawl, walk, talk etc. And there is still that shadow as to how long we may have her for (which we no longer dwell on but at times like this its still there). We love her to bits and mostly have gone past the “why us/ it’s not fair” bit and just get on with it and take things one day at a time, live in the moment, not think about the future etc etc.
But I’m scared. I haven’t heard back yet after my second MRI so it doesnt sound like anything urgent has been seen, but given that a meningioma is usually benign I am not sure that would count as urgent anyway, and there were definitely indications of demylenation in the first one -“several” in both my brain and spinal cord. It just feels like too much for one family to go through, and has brought back some of the “why us/its not fair” stuff.
I just want my son (6) to have as normal and happy life as possible, and I worry that my husband (who is fab) will struggle if the balance of what I can do or not changes at any point. I am self employed (part time) so have no paid time off - and my job is also part of my coping strategy too.
And yet all this seems silly on the basis that my symptoms are so mild - if I knew that was all I had to deal with it would be fine, its the worry of what might happen next, and the feeling of not being in control x