Joy and Sorrow

Sharing experiences with other people whose lives are affected by liver disease and in particular biliary atresia has been the single biggest thing that has helped me come to terms with Hannah’s illness. This is why I have the desire to set up some sort of UK based forum. Initially I am thinking fairly small; an online forum specifically aimed at BA in this country. Eventually, the sky’s the limit – perhaps a national Biliary Atresia Support Network, and/or a liver disease forum for the UK similar to CLASS, maybe in conjuction with CLDF. Even setting up the initial basic forum at present seems like a large task and any ideas or offers of help will be gratefully received!

This sharing of other people’s experiences, in my view, not only provides mutual support and understanding which those not directly affected find difficult to deliver, but also helps you keep a healthy perspective on things. You are not alone on your journey, and you see the reality of the disease as a whole, not just your own experiences of it. The individual relationships that can also be struck up are even more precious.

Of course, in order to benefit from this mutual support, you have to give of yourself. You have to take on board other people’s problems, try and empathise with them, pray with them and for them. I think everyone does this, regardless of whether or not they post prolifically or mostly just read.

The world of liver disease is a microcosm of life. There is joy, tragedy, hope, despair, and plenty of good humour and resilience. It’s just more concentrated – rather like Eastenders.

The joy this week was learning that Molly, age 2, from the UK, received her new liver just under two weeks ago. Molly had biliary atresia and had been waiting for a liver since before Christmas. Last I heard she was doing very well and was out of ICU. The sorrow was double edged – firstly for Molly’s donor family (what a gift they have given!), then secondly for Daniel, age 1, from the US, who was doing well after a transplant in April and who died suddenly a fortnight ago. He also had biliary atresia.

These families will be in my thoughts and prayers – and I am lucky enough to know I would be in theirs should it be needed.

I have also been thinking this week about those countries where transplantation is not an option. I have read a lot of cries for help from people who are trying to raise huge sums of money to travel abroad for a liver transplant, while their child is dying of liver failure before their eyes. It is heartbreaking.

I have learned so much already on this journey, not least that nothing we have should ever be taken for granted. And I still have so much further to go……