Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

The Sound of Sirens

I had one of those 'moments' today. You know the sort- sick in the pit of your stomach, heart racing,
 catch your breath sort of moment. It was nothing really- an ambulance; sirens blaring, lights flashing, whizzed by as I pulled in to get out of its way. H wasn't with me (it was respite time and I'd taken Cheeky to the park) and as I surreptitiously checked my phone wasn't on silent, I was once again filled with The Fear. The Fear that the sirens were coming for my son.

It's a strange sensation that long wait for an ambulance to arrive. Seconds feel like hours and only the calming repetitive questions from the operator stop you screaming in fear. In all honesty, the first time I rang 999 I think all I did was scream, although at some point I must have stipulated 'ambulance'. I do distinctly remember being told to "calm down" and that she "couldn't understand a word I was saying", but it's hard to remember anything as complicated as your address when your baby is blue and lifeless in your arms. I've since heard (on 'helicopter heroes' or 'casualty' or somewhere) that they can get your address from a GPS signal on your mobile phone if needs be, which makes me feel slightly less shit about my incompetence that first time. It also never occurred to me to do mouth-to-mouth that first time either- which you'd think would be obvious- but screaming and crying and shaking him was my preferred method of dealing with a lifeless child until the first time Mr. M witnessed one (boxing day, I believe) and quickly stepped in with CPR. 'A-ha', I thought, 'that looks a bit more pro-active!' And shortly after resuscitation training commenced! 

I suspect, if you met me now or watched me handle H's seizures (we didn't know that's what they were at first) you'd think me brave or strong or perhaps assume I was medically trained. The truth is I had to become this person, to build this shell- in essence my son's life depended on it, on my ability to stay calm, to give mouth to mouth, to ring an ambulance ... 

But that first time ... God that first time ...

There are so many many many times I've thought my son was dying. So many times I've begged and cried and pleaded with God. There have been the dramatic side-of-the-road-giving-mouth-to-mouth-incidents and the more 'controlled' 20-doctors-and-nurses-around-his-hospital-bed-on-a-'crash-call'-with-a-resus-trolley-and-heart-paddles, to the "shit-he's-stopped-breathing"-in-the-middle-of-dinner-at-your-mate's-house kind of events with H. And there's the times that I've woken in the middle of the night or early in the morning, too scared to check-just in case.

The ambulance today brought me back there. Back there to a place I can't bare to be but fear I'll be in the future. He has been so healthy lately, his seizures controlled (touch wood). 

I never want to see inside an ambulance again.