Day 16 - Something Difficult About My 'Lot In Life'.
I don't like this subject because it forces me to be too honest with myself. However, while I'm being honest with myself, that doesn't mean I have to be completely honest with you lot!
I guess the most challenging thing in my life at present is how I'm managing to stay sane in a world full of uncertainty. I had been trying to find a way to describe the feeling of relief versus frustration that my child isn't in renal failure. It's not that I want to see him like this, but until you've lived a moment in our lives, I don't expect many to understand. A friend summed it up perfectly:
"Claire, I really think I understand about the waiting for the renal failure to hit feeling. It feels like an axe hanging over your head at all times. You are constantly aware of it, constantly afraid it will fall. In fact, you know it almost certainly will fall and it will hurt when it does. You spend your time preparing to be ready to react when it does fall: reading up, studying, asking questions to other people about what they did when the axe fell.
At every appointment when the doctors say, "It doesn't look like it's going to fall anytime soon." There is the horrific mix of emotions between "Thank God it's not falling now" and "But this means I have years more of living with this thing hanging over my head--and of having to think about it one day falling." There's no good way out of it--sometimes it feels like if that axe would just fall you could finally stop thinking about it.
At least I know that's how I've felt at times, irrational as it really is. Of course my rational side doesn't want my child to ever face renal failure, but my far less rational emotions sometimes jump out of me and scream, "I wish I could just face this lurking monster head on--face it and fight it--now!" But then I remember that that is a fight I can never really "win" and I remember to be thankful for all the days that the axe stays over our heads, that the monster stays hidden away, because that is the best there is for us.
It isn't an emotional war that very many people can understand, and one I've struggled to put words to before when doctors have said, "She's fine for now, just enjoy her." Yes, I enjoy my daughter, but it isn't carefree--it's actually quite exhausting enjoying her with that monster following her around everywhere she goes.
If that's how you feel, you're not ridiculous or crazy, just a mother who is tired of living with an axe over your head.''
You see, I went through the baby and toddler years worrying whether renal failure would rob me of my child, now we're approaching his teen years faster than I would like, and I worry that it will rob him of his potential achievements. When I don't worry about the near immediate future, I worry about whether he will be robbed of his twenties and any chance of settling down. Or what about his thirties and the chance of starting his own family. When I don't worry about ALL OF THAT, I worry about autism robbing him of all the same things but in a different way.
I don't know how I'm going to overcome it other than with the support of my other son, Harry, who is Charlie's unaffected twin brother; with the support of loved ones, and with the occasional breakdown. It's okay to cry. The trouble is, in this world of uncertainty that we live in, there's so much else that wants to throw itself in my face; be it dishonesty from those you love and respect and realising they don't hold the same level of respect for you, the car breaking down every five minutes or unexpected bills dropping through the letterbox; there is always going to be something to upset the applecart. I think for now, I should aim to be grateful for the small things and worry about the big things as they happen.
Take a look at the other ladies taking part in the challenge