Its easy to forget that you are gravely ill even though we can't see any outward symptoms anymore. Its easy to forget that you won't keep going strong until old age, and nobody knows what's wrong. Its easy to forget that the end could come all too soon, and there's no answers to the question 'why' and 'what do I do about it'? Its easy to forget that as I go about my own life, you're living with constant unknowns and whats going to happens every minute of every day of every month that passes until something concrete is established...
And, to add injury to insult, you've just found out that your hearts' deepest desire can't come true, unless major medical intervention occurs, but its easy to forget that won't happen unless your symptoms worsen again and everything starts to fail. Its easy to forget that likely will, in the very near future. (You can find a bit more about this here).
Its easy to forget how terrifying this is when every day life gets in the way. When you're not near enough to see and touch and hear every single day. When right now, you seem strong and healthy and vibrant.
We were reminded again this afternoon, and it brought up old fears (that are once again very real to me) and utter sadness and many, many tears.
We are reminded again how important family is- there's nobody more important. I am reminded again that every day is a gift, and the most needs to be made of it no matter what. We need to spend more time together, we need to talk more, your nieces need to know who their auntie is and what kind of woman she is. I don't want there to be an 'was' for a very, very long time.
The thought breaks my heart. More tears fall just thinking about it.
And, I don't want to lose you. You're my best friend, my sister, we've weathered thick and thin together, and doing that without you devastates me. You're my person. You celebrated with me when I got married; you drove all night and stayed up all day to help coach me through delivering my children- its your voice that I remember firmly and excitedly talking into my ear to push, push, push!!!; you allowed me the honour of being your person at your own wedding...you've stood up for me and protected me, and I've done the same for you.
That you can't have children is sad, and I know I don't completely understand what that's like, but I can empathize. I'd rather have that than a life without you.
A friend said today that when you're faced with your own mortality, the news is a tough pill to swallow. But, she went on to say that 'when your mortality is in question you just have to live every day to the fullest!! Stay positive...which is hard to do some days!' What we have to do now is just that.
I don't know what your plan is, but I know that in the days following, I will be trying to keep my head help up, my outlook positive, and hope against all odds...