Back to normality, whatever that is!

So, we managed to squeeze every last ounce of fun out of the summer holidays with a trip down to the Blue Reef Aquarium with SCARF. It was another great day and we were really pleased that even Patrick was able to take in his surroundings and was captivated by the fish. We have been to many places over the last month where Patrick hasn't really been able to see what's going on, most animals or birds we've seen have been too far away in their cages and Patrick just isn't able to focus and see them. With the floor to ceiling fish tanks we were able to push his buggy right up against the glass and the flickering lights in the tanks highlighting the colourful fish really caught his attention which was really lovely to see. He even had a close encounter with a starfish called Patrick and a giant crab! Isaac has gone back to school into year 1, he's already loving his new class and teacher, it's almost like he was never away. He's also started football training with Burton Youth under 6, scored 2 blinding goals on Saturday so we're hoping he's gonna be the next Walcott. Either that or he'll be a rock star, he's already becoming a bit of a Deva, this morning I walked into the lounge and caught the tail end of him singing to Patrick.
















He said he'd made up a song about Patrick and if I wanted to hear him sing it I had to A) play with him in the playroom at Naomi House later and B) pay him 1p! I tried to haggle but he just said "look Mum, that's what all the other singers do". I'm sure all the professional stars out there let their Mums watch them for free, he'd better not be so tight when he's famous!

Patrick has been a bit poorly again over the last week, just another cold again but it always hits him so hard. He hasn't been having many seizures though which is good although he has had a couple of long ones and we've had to use the midazolam, I'm sure it's just because he's under the weather though. We've had a run of really bad nights with him waking up at all hours coughing or fitting but we're off to Naomi House today for another 3 night break so hopefully we'll be able to catch up on the lost sleep a bit.

I finally plucked up the courage to have all my hair cut off again. I've been growing it out for the last 5 years and it was looking OK but I've spent the last year with it in a pony tail as it gets in the way when I'm looking after Patrick and it took so long to wash and dry it was just a pain. So I went and had a morning of pampering in the salon, had it all cut short and dyed purple with blond highlights, a total change. My brother thinks I'm having a midlife crisis because I turn 30 next year but I've always been a bit of a nutter with my hair. I must admit when I decided to have it done part of me thought that if it all went horribly wrong and I ended up looking like a clown then at least people might stare at my stupid hair and not at Patrick when we're out and about. As Patrick is growing (he's huge already!) you do notice more people staring, I can ignore it to a certain extent but I feel awkward when strangers start talking to Patrick (usually when we're standing in a que for the checkout) and they get no response, I never know whether to explain why he wont acknowledge them when really it's none of their business anyway. I guess as he gets older and it becomes more obvious that he's disabled then people will probably stop trying to talk to him, which is sad in a way but easier also. Martin doesn't cope very well with the staring and tends to let people know in his own subtle way that he finds it rude.

Anyway, I'm off to finish the packing and do the chores before we leave for Naomi House later, I'll probably not get a chance to post for a while now as we're away until Wednesday then I'm off again for a few days with Patrick and my Mum down to the brainwave clinic next Monday. I'm sure I'll have lots to say about that so you've been warned!

P.S Just wanted to share this, Martin came across it on one of his Infantile Spasm groups. Thought I'd post it on here, mainly for the other parents we know that read the blog. xxx

Someone I love relies on me in ways you will never understand. Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted. Someone I love will never have the opportunities that every child should have. Someone I love will need unconditional love and support after I am gone - this frightens me to the core. Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others. Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet. Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world. Someone I love has needs that require more time and energy than I have to give. Someone I love has needs that mean I am not able to meet basic needs of my own. Someone I love has needs that have become the driving force behind major decisions my family makes. Someone I love has changed me in ways I will never be able to describe. Someone I love has taught me about love and about the really important things in life...