Having a child with special needs affects the whole family.

Having a child with additional needs changes a family.  I think you become more insular as no one can truly understand how much your life has changed.  We are not the same people, same couple, same family as we were before our special boy, Hugh, was born.  Our priorities have changed.  Our needs have changed.  Hell, even our political views have changed.  It’s not all bad though.  Yes, I am beginning to feel isolated from even my closest friends, but in turn, we have grown stronger as a couple, talk more openly and rely on each other more.

My overriding concern has always been though, the effect having a brother with special needs will have on my eldest son, Sean.  He is nearly three and I worry almost as much about his future as I do about his younger brother’s. Will he get bullied for having a brother that is so ‘different’?  Will he feel neglected because his brother demands so much care and attention?  Will he be embarrassed by a brother that can’t walk or talk?  Will he be jealous…

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.