http://www.charliebrewersworld.com en-gb charliebrewersworld.com 2010-2-21T00:00:00Z charliebrewersworld.com http://www.charliebrewersworld.com/page4.htm#58882 Its a short one but I promise Im going to update much more frequently this year So much has happened since the last post I don t really know where to start. Most dramatically the girls have a new diagnosis Dravets Syndrome. Apart from a new name however it doesnt really change much at the present. They are now in separate key stages as well as separate classes and their progress is poles apart with Caitlin doing significantly better at most things. They have more seizures these days but not so many need ambulances so thats a bonus Charlie continues to progress at Charlies sweet pace which kind of makes a snail look like Usain Bolt If thats how you spell it But he does use some signs well and is much stronger and looks very cute in his new glasses. Im still loving being a lady of leisure to the constant bemusment of those who thought Id quicky tire of it. I enjoy going to the gym and having more time with the kids. Less time stressing about boring crap like work I do the ladies... 2010-2-21T00:00:00Z http://www.charliebrewersworld.com/page4.htm#36747 Well so much for giving up work and becoming a prolific writer Its a bit pitiful managing only one post since finishing isnt it No excuses no work nothing to do but enjoy the children potter round the house pamper myself and in a whole six months I manage only one. Terrible isnt it Ask me if Im bothered Nothing seems quite so pressing anymore. Im very VERY chilled. So what have I been doing I wish I could say Id been busy turning into Mother Earth nurturing Caitlin Claudia and Charlie into model children and theyd remarkably responded in kind by suddenly reaching milestones previously thought impossible...In reality however weve all just happily plodded on. The main difference there being the word happily because 99 of the time now thats exactly what I feel and I suppose the children have picked on that and so thats what we all seem to be The house hasnt turned into some domestic goddesses den of bliss Dinner hasnt turned into something Nigella Lawson would be proud of... 2009-2-16T00:00:00Z http://www.charliebrewersworld.com/page4.htm#29435 Ok Here are the answers to the top three questions Ive been asked these past two weeks 1 Fantastic 2 Nothing 3 Guilty pleasures like shopping on my own watching House and walking on the beach with Charlie The Summer passed in a flash and despite the gloomy weather was memorable for being the most relaxed summer break I can ever remember having no doubt because at the end of the summer break I was looking forward to more break Paul took a couple of weeks off and the relentless rain gave us an excuse to just chill out and enjoy the Olympics Wow There was quite a lot to enjoy there Chris Hoy had me on the edge of my seat a few times not that he ever really looked like losing But he and his teammates certainly made the velodrome worth watching. Then all the poolside action with Rebecca Adlington and the Rowers Wow I cant remember enjoying the Olympics so much ever before The Paralympics have barely started and we already have an impressive haul of medals. Day One brou... 2008-9-8T00:00:00Z http://www.charliebrewersworld.com/page4.htm#25542 ROADMAP TO HOLLAND By Jennifer Graf Groneberg Ok Ive been meaning to write about this book for such a long time but Ive been so busy and it deserves my full attention. Road Map to Holland is an emotional journey no map could hope to navigate. Its honest raw moving informative and inspiring. I could go on ... in fact Im going to I believe this is a healing read which is a strange claim but I genuinely felt better after reading it. Its deeply comforting to read the thoughts of someone grappling with the same problems joys emotional highs and lows and prejudices that you are. Especially when they are a little further down the road and their message is ultimately one of hope. I cried reading Jennifers book but I also laughed. There were times when I could have been reading my own diary because the experiences as well as the emotions and sentiments were so close to those Ive experienced with Charlie and the girls. Other episodes were completely removed from my experience fr... 2008-6-14T00:00:00Z http://www.charliebrewersworld.com/page4.htm#22991 Caitlin While watching the opening sequence to Disneys Finding Nemo for the zillionth time Caitlin Mummy Oh no The naughty fish is here Mummy Oh dear Caitlin Oh no He hurt Marlin Mummy Hes very naughty Caitlin Oh no Wheres Coral gone Mummy Where has she gone Caitlin Shes dead the naughty fish ate her Mummy Oh Poor Coral. Caitlin Oh no Nemos brothers and sisters have gone Mummy Where have they gone Caitlin The naughty fish ate them Mummy Well that is terrible Caitlin Oh no its not terrible. I think Nemos brothers and sisters were probably delicious Claudia Postseizure just before falling asleep Mummy Are you ok sweetheart Claudia with drunken grin spreading over face We need white paint and brown paint for the nice toast colour. Now mix together to paint your toast. Mummy Well thats very interesting Do you still feel sick Claudia Yes I do feel sick Still smil... 2008-4-18T00:00:00Z http://www.charliebrewersworld.com/page4.htm#20177 Well poor Charlies having a bit of a rough time. Since starting his nursery placement the first week in January I think hes made about three sessions the ret of the time hes been poorly and spent all of last weekend in hospital. Any time he gets a cold it just seems to go straight to his chest and knock him for six Anyway as seems the norm for hospital admissions at the Vic he went in with respiratory difficulties and in addition to the steroids antibiotics and nebulisers he also left with chronic diarrhoea and an incredibly sore bottom 2008-2-19T00:00:00Z http://www.charliebrewersworld.com/page4.htm#18747 Cant believe it but tomorrow Charlie starts school. Yes hes only two Hes going to have a couple of sessions in the nursery at the Special school the girls attend. I think it will do him the world of good because he is a very lazy boy and I think were all far too soft with him I will probably get upset but I cant put my finger on why I trust the school and its marvellous staff implicitly but its hard to let him go. I think hes always going to be my baby 2008-1-16T00:00:00Z http://www.charliebrewersworld.com/page4.htm#16857 Its been quite a while since I posted and theres probably only one genuine reason why. I received some unexpected and some very unwanted feedback Some individuals felt the need to tell me how unappealling and to use their words disgusting and ugly they found Charlie. After my initial shock I started to question myself. Why should everyone agree with me Why should I expect others to share my opinion on how fantastic Charlie Claudia and Caitlin are However Ive come to realise Im not the one with the problem. Its not a crime to be proud of a family others would consider less than perfect The authors of the comments arent really worth the effort of responding to so I wont. But its taken me some time to draft the following because I wanted it to reflect both sides of the coin. Its true not everything about disability is joyous Weve had our fair share of difficult moments. The most difficult of which was the original diagnosis and acceptance of the fact that our muc... 2008-1-14T00:00:00Z http://www.charliebrewersworld.com/page4.htm#13226 Well brace yourself....this will be my most cheerful post everJuly has brought more positives than June brought negatives A series of firsts for Charlie that the rest of us have delighted in The earliest one was so long in coming but he is now safely sitting unsupported and can correct himself when he starts to topple over As if that werent enough check out the first picture...we are standing and boy dont we know its clever Hes so proud of himself He still needs a hand to support him but hes genuinely bearing weight which is such a relief to us all. Next milestone and my personal favourite I am Mama. I thought at first this was a coincidence but when hes upset and being consoled by someone other than me he repeats it until I take him. Then he cuddles in and goes to sleep actually shedding a tear as I write this Im so happyAnother new acheivement is grasping his toys and attempting to use them with intent In the fourth picture we are proudly managing a dummy and a be... 2007-7-29T00:00:00Z http://www.charliebrewersworld.com/page4.htm#11987 While trying to update Charlies blog recently I seem to have deleted a chunk of it and even more puzzling one of his entries has jumped to the right of the page This isnt intended to be an artistic effect I just having worked out why its moved or how to move it back yet Hopefully will work out glitches soon but so far....just puzzled 2007-6-20T00:00:00Z http://www.charliebrewersworld.com/page4.htm#11448 There are several things these last months we could have done without. Most significantly Charlies EEG results did not bring the comfort we expected. In fact quite the opposite Charlie is experiencing some seizure activity. Our first reaction to this was to be frank disbelief Having seen so many seizures in the past surely wed have noticed However shortly after these unwelcome results came some unpleasant nocturnal episodes and all becomes clear You dont notice anything when youre sleeping do you So were back to sleep deprivation. Well I say back I dont think we ever left it. Charlie sometimes has a good nights sleep but do Paul and I Not really When hes grizzly you really darent ignore it and when hes peaceful youre worried he isnt making any noise so you go and check on him anyway Poor chap cant win To cap it all by the time everyones settled one of the girls almost invariably starts their nocturnal wanderings. Theres literally always something happening i... 2007-6-2T00:00:00Z http://www.charliebrewersworld.com/page4.htm#9903 Thats what many people have told me this month. Charlie is officially losing that baby look. Ill be honest this terrifies me partly bacause Charlie has to be my last baby so Ill never be here again and partly because as Charlie moves through each stage I have to acknowledge and face different realisations and challenges. In fairness Charlie has so far proved far less of a challenge than I could have imagined in the bleak first few days after his birth. When I have discussed those initial days with close friends and family since one question has consistently reoccurred How did you get through it The answer is simple. I got through it because grief no matter how intense is not terminal I survived because I didnt die In the first few moments I thought I might. In the first hour I wished I could. In the first weeks I awoke with a crushing heavy sensation and thought When will this awful feeling go I didnt want Charlie to go of cours... 2007-4-5T00:00:00Z http://www.charliebrewersworld.com/page4.htm#8457 Charlie is making better progress this month. He has cut his first tooth thats been a long time coming He plays with it with his tongue constantly and for some reason known only to him finds it irrationally funny. Hes developed the kind of giddy infectious laugh that could affect even the hardest heart. Best of all Charlie is really trying to communicate. He makes strange yet completely endearing noises and shows real delight when they are echoed back to him. A broad smile and a few seconds later hes off again Its a conversation...and its genuinely heartwarming.Ive also noticed for the first time hes actually starting to reach for his toys. This is a milestone Ive been watching for for so long. Strangely enough as if he senses my anticipation his hands stay rigidly by his sides as I play with him. As soon as I move away and he thinks Im not looking his hands start to twitch and he makes those tentative stretching movements outwards. Hes ... 2007-1-21T00:00:00Z http://www.charliebrewersworld.com/page4.htm#11988 So Ive spent a year with this gorgeous boy now and what has he taught meFirstly the capacity to love is infinite I could never imagine loving anything or anyone more than Paul and I love our children or each other.Secondly he has redefined friendship for me The friends I seem to have had a lifetime have proved they will be friends for life. I love and value them more than ever before.Some friends I havent had for so long have proved they are worth crossing the globe for Most friends and especially Charlies Godparents have simply been there quiet asides to Paul and I when it has been necessary cuddles for Charlie and the girls small things that ultimately mean everything.I have also realised throughout the course of the year that people I had previously considered friends are actually just colleagues and that thats ok. We all have our own lives to lead and we all keep those who are the most important closest. In some ways this has been the most important lesson of the year. It all... 2006-12-20T00:00:00Z http://www.charliebrewersworld.com/page4.htm#8452 I doubt Ill ever be sorry I started this. It has brought unexpected kindnesses from the most unexpected of people. Charlie is doing so well. This month he has begun to sit up. He does not have control for long but he does have control a little like me After a really nasty chest infection he is finally able to return to hydrotherapy. The session brings ear to ear smiles from start to finish. It introduces me to those in similar boats. They treat me with a kindness and sensitivity I have only come to expect from closest friends and family. It also reaquaints me with the professionals who care more about the families they work with than their professional title they undoubtedly have a greater awareness of the difficulties of my situation than all but the very closest of my own work colleagues. It is therefore probably greater therapy for me than for Charlie Every parent regardless of their childs ability should experience a session like this. It is unadulterated happiness b... 2006-11-23T00:00:00Z http://www.charliebrewersworld.com/page4.htm#8448 Zebra crossings remind me of labour pains. Ive often thought that if life were more poetic it would have been a crossroad so much more metaphoric But as it was it was a zebra crossing. Ironic really as I was about to discover that life really isnt black and white.I was thirtyseven weeks pregnant with my third child when we had the customary dash to hospital. Staff on Maternity had told us to come in immediate family had been notified and I was feeling slightly foolish as there was not as much pain involved as I remembered so I admit to being less than convinced that baby was truly on the way.We pulled up behind traffic at a zebra crossing and waitedand waitedand waited. Cars ahead of us eventually began three point turns moving off in the direction we had come from. As my husband Paul contemplated doing the same if he could only put aside his curiosity I suddenly felt a quickening and intensifying of the sensations Id had since the early hours and realisation dawned that ... 2006-10-17T00:00:00Z