It was on this day 7 years ago that I was first diagnosed with Twin-Twin-Transfusion Syndrome - the only reason I remember the date is because it was St Patrick's Day.
The problem is that everything we are going through now feels connected to that TTTS diagnosis. If there were no TTTS there would have been no prematurity. If no TTTS and prematurity potentially Ashlea would not have a disability - so if not for TTTS I could have had perfectly identical identical twins.
But wait there's more. If there were no TTTS there would have been no kidney failure, and if no kidney failure there would have been no need for a transplant - and if there were no transplant there would have been no complications for Murray.
The connections go back even further than the TTTS diagnosis though. If we didn't pursue IVF to have children our chances of having ID twins would have been much lower. If no ID twins then no TTTS. If no TTTS then no kidney failure, no transplant and no hypoxic brain injury for Murray.
It's all connected and at many points along the journey we have made choices and those choices all seem to have lead us to where we are today.
We chose to try and have another baby after Emma - which lead to us having ID twins (not that we chose for the embryo to split - that bit definitely wasn't up to us!);
When things went wrong with the pregnancy we chose to resuscitate both our babies rather than let them 'succumb';
We chose to continue with intensive care with Ashlea even when she was very sick;
We chose to give her a kidney from one of us rather than starting dialysis and waiting on the transplant list.
I don't think any of our choices were bad choices - and chances are I would make the exact same decisions again - but days like today make me stop and think about what my life might be like had I made different choices.
What if we had decided that one child was enough and just had Emma - maybe she would struggle less if it was just her? I think she'd be pretty lonely though - she loves her sisters;
What if we had not resuscitated Ashlea at birth? I couldn't imagine my life without her - she is such a delight. I can't imagine the grief I would have felt if she hadn't survived. I don't know if having an 'easier' life without any disability in it would be enough to make up for that grief? ;
What if we had decided not to do a directed kidney transplant? Ashlea would most likely be doing peritoneal dialysis every night while we waited for a donor. I'm glad she's not doing that - her quality of life is so good now I couldn't imagine going back to chronic renal failure - but the transplant lead to Murray's brain injury;Our choices have definitely lead us on an unexpected journey.
I'm not sure how the interplay between our choices and God's will works on a practical level. Is it just a consequence of our choices that Ashlea is living with disability? Or did God ordain before time began that this was to be her life?? He knows the number of her days and the place He has prepared for her in heaven - and also the blessings for me to discover along the way as her mum. In some ways we are living with the consequences of our decisions but I prefer (need ?) to believe that this is all part of God's great plan. It might be hard to see God working in the messy details of day to day life but one day when all is laid bare, God's plan for Ashlea's life will be plain for all to see and I am confident that it will show God's goodness and result in praise and glory to Him.
I find it much harder to apply this to Murray's brain injury though - probably because that feels like it is the consequence of other people's decisions rather than our own which somehow seems harder to live with. If God is indeed in control of all things He must also be in control of this and can somehow use it to His glory - even though from this vantage point in time it seems very hard to see how.