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Thursday, September 12, 2013

We are waiting, we are waiting...

Mostly in to theatre nearly 3 hours ago. We do not expect to see him inside another 4. We wait...

The greatest fear I have is that the last thing E will know is me restraining him, while the mask is applied for the gas. My greatest hope is that he remembers the last words said to him while awake. "I love you" from his mum and "keep fighting bubba" from me.

I can't dwell on that today as it's a bit rbed a bit of the the moment.

So the business for today is something I have read a few things about recently. The reaction to the news that you have a child with special needs or needing major surgery. "I don't know how you cope". This came to mind when a new colleague was asking about E and repeatedly told me how they didn't understand how I could be so solid about it. They didn't understand how I could be so strong and how I could carry on. I will now discuss my take on this.

Firstly, I do not consider myself strong - I would like nothing more than to curl up in a ball and wait for someone to tell me its over. E deserves more than that. He's the strong one. He is the only one who really carries on like nothing is happening. He will need help, not want it, and that help comes from me and his Mum.

Secondly, our "strength" if that is what it is, does not just exist. It relies on support and foundation. The way we were raised, the family who are there when we need to vent, take a break, or just remind ourselves who we are. Our friends who have never faltered and in my case have needed to give me the kick I needed to bring my family through its trials.

Most recently, the support of complete strangers who have never met E, or us. The wonder of social media has seen E prayed for and sent positive vibes from around the world. I cannot explain how good that makes us feel, that it's not just us on E's side.

Oddly, today I spare a thought for the other people in E's life. His nanny L who claims she has the best boss in the world because of the greeting she gets each morning. His worried grandparents whose feelings I cannot fathom (that's a generation they should never worry about seeing like this!). His aunts and uncles and cousins, separated by hundreds and thousands of miles. Mostly though his brother C. Himself a little boy, who tears up at the mention he won't see E because he needs an operation. Who has a droopy bottom lop when he tells you he will miss E.

This brings me back round to the functioning thing. There is no choice. E and C are our reason to get up on the most difficult mornings - this morning for example, E decided to talk to us through his monitor from 4.30 and C woke at 6 and came for a cuddle in bed - quite literally our reason to get up. Functioning is a difficult thing at times, but I guess we are.

Well that wasted a half hour! I imagine the next post will come when we have E back and I've caught an opportunity to grab the phone.

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