Martin and Hazel Frost Our Life in Argentina

a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_X21YCywhQVs/TH9eTQnrIrI/AAAAAAAAD4Q/1niOW1tuw-A/s1600/IMG_2530.jpg"img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="http://2.bp.blogspot.com/_X21YCywhQVs/TH9eTQnrIrI/AAAAAAAAD4Q/1niOW1tuw-A/s320/IMG_2530.jpg" alt="" id="BLOGGER_PHOTO_ID_5512228153896673970" border="0" //aSmall one in a big coat, waking early and excited about going back to school. Chattering all morning about not being in Mrs Tucker's class any more, about moving up, about seeing friends and catching up with all her TAs. And then getting quieter and slower as we got closer to school, and "Mummy I am very 'cited" changing over to "Mummy I love you, can I hold your hand?"br /br /Complete surprise when we walked past her old classroom and over to the next entrance. A sudden realisation that moving classes does actually mean moving. And then some reassurance at seeing all her old classmates waiting at the new entrance too. Proper big school now; the whistle blows and the children all line up, and Little Fish lined up with all the wrong children and had to be gently shuffled into her own line.br /br /And then into school; it's a bit tricky to do that when you're trying to drive forwards and look backwards. Finally through the doors and there's "Mrs. Skello" her 1:1 and perhaps this might just be alright after all. One final goodbye wave and off.br /br /More changes this year; Little Fish will be riding Mog's school bus. This isn't the perfect solution; she'll arrive late and have to leave early, but it means Mog won't be dragged out in all weathers when unwell or fitting or in spasm. At ten to five last night it was finally confirmed that LF will only ride the school bus when Mog's school is open, so could I please walk her to school myself today? Not a problem, nice to do so on her first day back I think. So Mog and I had a pleasant stroll to school, followed part of the way by the Grolly-beast whose adventures in taillessness have not yet put her off wanting to travel. We dropped her, we walked home, I sat down to write this, and a very large green and white school bus pulled up to take Little fish to school.br /br /I do hope the rest of the term will work better.br /Tiadiv class="blogger-post-footer"img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2411253170651203836-3424606054096586810?l=behindthechild.blogspot.com' alt='' //div

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Little Fish had a lunch date today; a friend picking her up after Holiday Club and entertaining her for the afternoon. Bliss. Mog and I could have sat and enjoyed the silence, but instead we went off for a very civilised ROSY coffee morning; three girls and two Jacks and lots of twitchy giggles between them. Fun.br /br /And then lunch with just one of the Jacks plus his mother and another temporarily child-free friend. Proper lunch (well, paninis), with actual conversation. Real, proper, meaningful conversation. I'd say uninterrupted by spilt drinks, but I spilled mine; I'd hate for it to be a truly civilised mealtime. But no need to sort squabbles or answer inane questions about why ketchup is red or how it's really not a good idea to pour yoghurt on the table and how you cannot take that chocolate bar into the children's play area and no I'm not going to put you on the rocking horse I'm DRINKING MY COFFEE. Just peaceful, calm, conversation with two peaceful and non-verbal children unable to spill any secrets shared and quite happy to be listening in.br /br /A stroll around the garden centre and then I think we blew our cover. Despite being active child-free, we went, not through the plants and clothes and garden furniture, but to go and prod the pigs and giggle at the goats. To try to provoke the parrot into saying hello, to watch ferrets squabbling over a drainpipe and helpfully bounce each other through the trap door, and to make plans for filleting a four foot sturgeon. To go all gooey over the guinea pigs and count the chickens (after they were hatched) and shudder over the less attractive sea life.br /br /object width="320" height="266" class="BLOG_video_class" id="BLOG_video-b75507448d12ca6c" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0"param name="movie" value="http://www.youtube.com/get_player"param name="bgcolor" value="#FFFFFF"param name="allowfullscreen" value="true"param name="flashvars" value="flvurl=http%3A%2F%2Fv4.nonxt3.googlevideo.com%2Fvideoplayback%3Fid%3Db75507448d12ca6c%26itag%3D5%26app%3Dblogger%26ip%3D0.0.0.0%26ipbits%3D0%26expire%3D1285597977%26sparams%3Did%252Citag%252Cip%252Cipbits%252Cexpire%26signature%3D3C119FFB4BEF301B3D39A04222439A4E18DFFCD6.97EA19E7AE5362C40E893351E0718A02ACC31C1%26key%3Dck1amp;iurl=http%3A%2F%2Fvideo.google.com%2FThumbnailServer2%3Fapp%3Dblogger%26contentid%3Db75507448d12ca6c%26offsetms%3D5000%26itag%3Dw160%26sigh%3DB1DCDgIRCrBzpe5XmstSkOIROK4amp;autoplay=0amp;ps=blogger"embed src="http://www.youtube.com/get_player"width="320" height="266" bgcolor="#FFFFFF"flashvars="flvurl=http%3A%2F%2Fv4.nonxt3.googlevideo.com%2Fvideoplayback%3Fid%3Db75507448d12ca6c%26itag%3D5%26app%3Dblogger%26ip%3D0.0.0.0%26ipbits%3D0%26expire%3D1285597977%26sparams%3Did%252Citag%252Cip%252Cipbits%252Cexpire%26signature%3D3C119FFB4BEF301B3D39A04222439A4E18DFFCD6.97EA19E7AE5362C40E893351E0718A02ACC31C1%26key%3Dck1iurl=http%3A%2F%2Fvideo.google.com%2FThumbnailServer2%3Fapp%3Dblogger%26contentid%3Db75507448d12ca6c%26offsetms%3D5000%26itag%3Dw160%26sigh%3DB1DCDgIRCrBzpe5XmstSkOIROK4autoplay=0ps=blogger"allowFullScreen="true" //objectbr /And I'm not quite sure how it happened, but I'm wondering what it says, that even on a precious day off in August (and these are rare creatures indeed), we choose the childish things. And enjoy them.br /br /Tiadiv class="blogger-post-footer"img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2411253170651203836-4173736316366863793?l=behindthechild.blogspot.com' alt='' //div

Are you a carer? Something not quite right about the place where you work? Missing equipment, water too hot, lacking training? Don't sit on it - speak up and if your managers don't listen, go over their heads.br /br /Are you responsible for bathing someone who can't bath themselves? Test the water. If there's no thermometer shout loudly (or buy one). If you're using your hands, take the gloves off.br /br /Are you caring for someone and realise there's been a terrible mistake and the person you are caring for has been badly burnt? Get them away from the heat and under cold running water and keep them under that cold water until help comes.br /br /Are you a parent or decision maker considering Supported Living over a more traditional Care Home environment? Fewer regulations and more freedom and a more homely environment is great, but bear in mind some of those regulations might just save lives, even if they're cumbersome and unwieldy the majority of the time.br /br /Are you a manager? Consider that emergency first aid possibly ought to be a priority when training your new staff; if the unthinkable happens you want your staff to be able to act without thinking and act in the right way.br /br /And are you hospital staff? Please review your policies and allow Foster Carers to be considered Next of Kin; it is just possible that the woman who cared for the injured adult for 7 years might know that adult better than the carer who has only been with her for a handful of days.br /br /Tiadiv class="blogger-post-footer"img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2411253170651203836-5547409699848669337?l=behindthechild.blogspot.com' alt='' //div

Two small ones very happily shouting at each other. "Hello!" exclaimed Mog's switch, fruitily. "HeRROoOoooooOO!!!!!" replied her friend. And on. And on. And on and on and on and on.br /a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_X21YCywhQVs/THLFQu7b3II/AAAAAAAAD4I/CAVU8mS8ftM/s1600/IMG_2503.JPG"img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_X21YCywhQVs/THLFQu7b3II/AAAAAAAAD4I/CAVU8mS8ftM/s320/IMG_2503.JPG" alt="" id="BLOGGER_PHOTO_ID_5508682185493437570" border="0" //aAnd how can this boy be this tall now? The first Special Kids meet up I went to, he was a teeny tiny little boy with delicate, wispy hair. He wobbled over and plopped himself on my knee to watch the sheep over the fence.br /a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_X21YCywhQVs/THLFQNUu0CI/AAAAAAAAD4A/gTDH7V0CMhU/s1600/IMG_2511.jpg"img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="http://3.bp.blogspot.com/_X21YCywhQVs/THLFQNUu0CI/AAAAAAAAD4A/gTDH7V0CMhU/s320/IMG_2511.jpg" alt="" id="BLOGGER_PHOTO_ID_5508682176472731682" border="0" //aOne of our neighbours.br /a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_X21YCywhQVs/THLFPdSJr3I/AAAAAAAAD34/jeTr3h3R-9A/s1600/IMG_2512.JPG"img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_X21YCywhQVs/THLFPdSJr3I/AAAAAAAAD34/jeTr3h3R-9A/s320/IMG_2512.JPG" alt="" id="BLOGGER_PHOTO_ID_5508682163577007986" border="0" //aAnd a worryingly increasing breed of subterranean cyberman masquerading as a tent.br /a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_X21YCywhQVs/THLFO6D-AqI/AAAAAAAAD3w/ZiU7mr7L6P0/s1600/IMG_2513.jpg"img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_X21YCywhQVs/THLFO6D-AqI/AAAAAAAAD3w/ZiU7mr7L6P0/s320/IMG_2513.jpg" alt="" id="BLOGGER_PHOTO_ID_5508682154122281634" border="0" //aYou just know it's going to rise up in the night and assimilate all within its path.br /a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_X21YCywhQVs/THLFObLiEqI/AAAAAAAAD3o/eLsrHiPmN7Q/s1600/IMG_2514.jpg"img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_X21YCywhQVs/THLFObLiEqI/AAAAAAAAD3o/eLsrHiPmN7Q/s320/IMG_2514.jpg" alt="" id="BLOGGER_PHOTO_ID_5508682145832506018" border="0" //aGood times.br /object width="320" height="266" class="BLOG_video_class" id="BLOG_video-5736f6c5ce25a252" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0"param name="movie" value="http://www.youtube.com/get_player"param name="bgcolor" value="#FFFFFF"param name="allowfullscreen" value="true"param name="flashvars" value="flvurl=http%3A%2F%2Fv2.nonxt6.googlevideo.com%2Fvideoplayback%3Fid%3D5736f6c5ce25a252%26itag%3D5%26app%3Dblogger%26ip%3D0.0.0.0%26ipbits%3D0%26expire%3D1285597977%26sparams%3Did%252Citag%252Cip%252Cipbits%252Cexpire%26signature%3D71D0FC8ED51175997138923FE36EA84C9E40879D.3563468E49C22F165D1B758BF7DDB00C78B7B518%26key%3Dck1amp;iurl=http%3A%2F%2Fvideo.google.com%2FThumbnailServer2%3Fapp%3Dblogger%26contentid%3D5736f6c5ce25a252%26offsetms%3D5000%26itag%3Dw160%26sigh%3D8Wp-FCywGUBwsWKp6R298fLSD7Iamp;autoplay=0amp;ps=blogger"embed src="http://www.youtube.com/get_player"width="320" height="266" bgcolor="#FFFFFF"flashvars="flvurl=http%3A%2F%2Fv2.nonxt6.googlevideo.com%2Fvideoplayback%3Fid%3D5736f6c5ce25a252%26itag%3D5%26app%3Dblogger%26ip%3D0.0.0.0%26ipbits%3D0%26expire%3D1285597977%26sparams%3Did%252Citag%252Cip%252Cipbits%252Cexpire%26signature%3D71D0FC8ED51175997138923FE36EA84C9E40879D.3563468E49C22F165D1B758BF7DDB00C78B7B518%26key%3Dck1iurl=http%3A%2F%2Fvideo.google.com%2FThumbnailServer2%3Fapp%3Dblogger%26contentid%3D5736f6c5ce25a252%26offsetms%3D5000%26itag%3Dw160%26sigh%3D8Wp-FCywGUBwsWKp6R298fLSD7Iautoplay=0ps=blogger"allowFullScreen="true" //objectobject width="320" height="266" class="BLOG_video_class" id="BLOG_video-ea1f0f04bf39745c" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0"param name="movie" value="http://www.youtube.com/get_player"param name="bgcolor" value="#FFFFFF"param name="allowfullscreen" value="true"param name="flashvars" value="flvurl=http%3A%2F%2Fv11.nonxt7.googlevideo.com%2Fvideoplayback%3Fid%3Dea1f0f04bf39745c%26itag%3D5%26app%3Dblogger%26ip%3D0.0.0.0%26ipbits%3D0%26expire%3D1285597977%26sparams%3Did%252Citag%252Cip%252Cipbits%252Cexpire%26signature%3D108198819FC9801641EB04DE3138FB8CED9A57CF.45BF6381E8A357B0D7024AECC75F32DAC85F5CF2%26key%3Dck1amp;iurl=http%3A%2F%2Fvideo.google.com%2FThumbnailServer2%3Fapp%3Dblogger%26contentid%3Dea1f0f04bf39745c%26offsetms%3D5000%26itag%3Dw160%26sigh%3Dqz3pULIBlv0J9mC6zK8frffdxxEamp;autoplay=0amp;ps=blogger"embed src="http://www.youtube.com/get_player"width="320" height="266" bgcolor="#FFFFFF"flashvars="flvurl=http%3A%2F%2Fv11.nonxt7.googlevideo.com%2Fvideoplayback%3Fid%3Dea1f0f04bf39745c%26itag%3D5%26app%3Dblogger%26ip%3D0.0.0.0%26ipbits%3D0%26expire%3D1285597977%26sparams%3Did%252Citag%252Cip%252Cipbits%252Cexpire%26signature%3D108198819FC9801641EB04DE3138FB8CED9A57CF.45BF6381E8A357B0D7024AECC75F32DAC85F5CF2%26key%3Dck1iurl=http%3A%2F%2Fvideo.google.com%2FThumbnailServer2%3Fapp%3Dblogger%26contentid%3Dea1f0f04bf39745c%26offsetms%3D5000%26itag%3Dw160%26sigh%3Dqz3pULIBlv0J9mC6zK8frffdxxEautoplay=0ps=blogger"allowFullScreen="true" //objectbr /Not great times; we came home a day early as Mog was ill. And by the time we got home she was really not very well at all. But, a lot of medication, a good medicinal chest-beating, a night on CPAP and a reasonable amount of prayer, and she woke up (eventually)div class="blogger-post-footer"img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2411253170651203836-1772311932667145601?l=behindthechild.blogspot.com' alt='' //div

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With side orders of cold, damp and soggy. English camping weather at its finest. Little Fish is delighted; I told her if it rained we could eat at the campsite cafe. And then the heavens opened and the weather forecast predicts more of the same for the rest of the week. Joy. Mog is less impressed; her new preferred horizontal position doesn't work quite as well in the driving rain. br /br /I didn't want to come away this week for many reasons, one smallish one amongst many being the fact that I put my tent away dry after New Wine, and I didn't want to get it wet again. And now I'm hunched in one corner of that same tent, wedging the groundsheet over the sod cloths with anything heavy and non-electrical, mopping up a large annoying puddle in the non-sleeping room (and very thankful it isn't the sleeping one), wishing I hadn't upset the many men on site who didn't help put our tent up. Mainly because they arrived after us so couldn't. br /br /Still, we're here, and we've spent a beautiful day catching up with friends we only see one year to the next. We've met new friends, seen children we've only met through photos, and eaten chips. That was about the plan for the week anyway; can we come home now?br /br /Tiadiv class="blogger-post-footer"img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2411253170651203836-1796334397661566469?l=behindthechild.blogspot.com' alt='' //div

Been turning this sentence over and over since I heard it at New Wine.br /br /The best span style="font-style: italic;"I/span can do is never ever going to be good enough.br /br /It's not good enough for Little Fish; she wants more of me, she wants me so close that she dribbles on my feet all night when we camp, she wants me so glued fast to her side that I can scarcely get out of her bedroom at home and close the door before a desperate wail calls me back in to tweak a strap or tug a sleeve or inch the duvet up her shoulders.br /br /It's not good enough for Mog, who needs someone to interpret for her all day long, to push her glasses back up her nose and empty her stomach of bubbles and massage away the neck spasms and uncurl her toes and pick her nose and smile at her and stroke her cheek and tickle up her dimple.br /br /It's not good enough for the people who phone, whether friends or loft insulation salesmen (really guys, do your research - ground floor flat!), who get half of me whilst the other half wrestles to silence a small child, or else locks herself away from the screaming child and then wonders what the child is doing out of earshot.br /br /It's not good enough to win me any kind of place in Heaven, if getting there is going to rely on my own efforts, on me achieving any kind of perfection all by myself.br /br /It's not all bad. The best I can do is sometimes quite good really. I can bake a chocolate brownie cheesecake whilst holding a small child and mopping a floor and listening to the radio and holding half a conversation with someone in the next room and keeping an ear out for the school bus and testing the fish tank and doing the washing up and writing a shopping list, and I only end up testing the dishwater for ammonia and sprinkling fish pellets in the brownie mix occasionally. At my very very best, I can even sometimes manage to get all three of us up, dressed, hair brushed and out of the door on time despite our carer not having turned up. And generally only one out of the three of us will be wearing odd socks or strangely stained clothing, and as long as that one is me and not the girls I'll take that as job done.br /br /But it's still not ever going to be quite good enough.br /br /Last term, after a year of trying to sort school transport, I stopped trying. I sat down, wrote a long letter to anyone I thought might be even vaguely interested, telling them exactly why I couldn't do the impossible. And after a year of trying to make it work, fretting over it not working, putting one child's life at risk in order to get the other child to school, we now have a solution. A solution which was out forwards within days of me stopping trying.br /br /And I'm thinking about those days when the alarm doesn't go off, when the carer doesn't show up and the bus is late, when book bags have done a runner and the girls have both woken up with birdsnest hair, when uniforms are in the washing machine when they should have been hung out the night before, and when there's no pen to sign the permission slip and no change in my purse to pay the optional charge. And I wonder, I wonder, what would happen if, instead of me taking a deep breath and leaping into the fray shouting orders and trying to do sixteen things at once, I instead sat down quietly and texted God "I can't do this - help!" And then actually waited for a reply.br /br /sup class="versenum" id="en-NIV-16461"/sup Trust in the LORD with all your heart and lean not on your own understanding. Prov 3.5br /br /For I can do everything through Christ, who gives me strength. Phil 4.13br /br /Tiadiv class="blogger-post-footer"img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2411253170651203836-8446053895978353056?l=behindthechild.blogspot.com' alt='' //div

a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_X21YCywhQVs/TGbTqwaNdnI/AAAAAAAAD3Y/J1UrKZVN1Gk/s1600/IMG_2483.jpg"img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="http://1.bp.blogspot.com/_X21YCywhQVs/TGbTqwaNdnI/AAAAAAAAD3Y/J1UrKZVN1Gk/s320/IMG_2483.jpg" alt="" id="BLOGGER_PHOTO_ID_5505320326009812594" border="0" //aOr possibly simply visiting model villages with friends.br /a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_X21YCywhQVs/TGbTdSzOfaI/AAAAAAAAD3Q/R_AJ9oxKhUk/s1600/IMG_2484.JPG"img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_X21YCywhQVs/TGbTdSzOfaI/AAAAAAAAD3Q/R_AJ9oxKhUk/s320/IMG_2484.JPG" alt="" id="BLOGGER_PHOTO_ID_5505320094723374498" border="0" //aTrains, trains,br /a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_X21YCywhQVs/TGbTdEPu3iI/AAAAAAAAD3I/HbMsaT8qCG8/s1600/IMG_2488.JPG"img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_X21YCywhQVs/TGbTdEPu3iI/AAAAAAAAD3I/HbMsaT8qCG8/s320/IMG_2488.JPG" alt="" id="BLOGGER_PHOTO_ID_5505320090816405026" border="0" //aand more trains!br /a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_X21YCywhQVs/TGbTc61AFmI/AAAAAAAAD3A/63F8FCVodYg/s1600/IMG_2491.JPG"img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_X21YCywhQVs/TGbTc61AFmI/AAAAAAAAD3A/63F8FCVodYg/s320/IMG_2491.JPG" alt="" id="BLOGGER_PHOTO_ID_5505320088288368226" border="0" //aMini things to keep the minibeasts happy; time for the older generation to catch up on a year of the life unblogged. Enough rain to remind us this is England, enough coffee from enough different coffee shops to keep us going.br /br /a href="http://www.frostmartinhazel.org/en/blog"Safe journeys back to Argentina/a.br /Tiadiv class="blogger-post-footer"img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2411253170651203836-3073971538496285124?l=behindthechild.blogspot.com' alt='' //div

It's a constant question from Little Fish these days.br /Hey, you. We are friends, you and me. Are you my best friend? a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_X21YCywhQVs/TGPoUC0UN-I/AAAAAAAAD24/fs5aoqkYWJQ/s1600/IMG_1404.jpg"img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="http://2.bp.blogspot.com/_X21YCywhQVs/TGPoUC0UN-I/AAAAAAAAD24/fs5aoqkYWJQ/s320/IMG_1404.jpg" alt="" id="BLOGGER_PHOTO_ID_5504498600628205538" border="0" //aI am span style="font-style: italic;"one/span of your friends, wisely replied one teen last week.br /a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_X21YCywhQVs/TGPoTtpii4I/AAAAAAAAD2w/KEnxaupPJMc/s1600/IMG_2339.JPG"img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_X21YCywhQVs/TGPoTtpii4I/AAAAAAAAD2w/KEnxaupPJMc/s320/IMG_2339.JPG" alt="" id="BLOGGER_PHOTO_ID_5504498594945862530" border="0" //aBut is my sister my best friend? She is my friend and we are sisters and I love her, actually.br /a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_X21YCywhQVs/TGPoTVCD6ZI/AAAAAAAAD2o/LWpNoNI-gR8/s1600/IMG_2463.JPG"img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_X21YCywhQVs/TGPoTVCD6ZI/AAAAAAAAD2o/LWpNoNI-gR8/s320/IMG_2463.JPG" alt="" id="BLOGGER_PHOTO_ID_5504498588337826194" border="0" //aAre you my best friend? We can play together because we are best friends.br /a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_X21YCywhQVs/TGPoTNG8yNI/AAAAAAAAD2g/Ug8M8gC3Qi8/s1600/IMG_2478.jpg"img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="http://2.bp.blogspot.com/_X21YCywhQVs/TGPoTNG8yNI/AAAAAAAAD2g/Ug8M8gC3Qi8/s320/IMG_2478.jpg" alt="" id="BLOGGER_PHOTO_ID_5504498586210846930" border="0" //aHey, do you want to hold my hand so we can walk together, cos we are best friends you and me. Um, Mummy, what is that boy's name again? We are best friends, we are.br /a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_X21YCywhQVs/TGPoSmzqa9I/AAAAAAAAD2Y/wTdRPDJFpWg/s1600/IMG_2481.JPG"img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_X21YCywhQVs/TGPoSmzqa9I/AAAAAAAAD2Y/wTdRPDJFpWg/s320/IMG_2481.JPG" alt="" id="BLOGGER_PHOTO_ID_5504498575929404370" border="0" //aAnd I love P cos he is my very best friend.br /br /But I am not friends with you, Mumma. It is not kind to make me sleep in my own bed.br /br /Last year's friends claimed Little Fish was the best hugger in the school. The year before's friends claimed she was the best kisser in pre-school. Best friends, in the world according to Little Fish, hold hands and obey orders. Amazingly, so far in life, she's not found a shortage of children willing to go along with this.br /br /There are good things in Little Fish's world. In her world, if you know each other's names, you are friends. And if you are friends, then there is nothing more important in the world than holding hands, cuddling, and playing. I suspect she may have some of her priorities more right than the rest of us.br /br /Tiadiv class="blogger-post-footer"img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2411253170651203836-2167652242889522877?l=behindthechild.blogspot.com' alt='' //div

So New Wine was great. Camping in fields so dry that any rain was completely absorbed by the parched earth, disappearing without trace and making it possible (if your blog name is Little Fish) to roll all over the field again. A vast tented city with the bonus of hot and cold food and solid shelter always available. Lots to do, lots to see, plenty of people.br /br /But something was missing.br /br /And yesterday, as I stood in the pouring rain, having given my coat to a Nigerian Guide who was camping without one, incinerating fish in newspaper, baking cakes in oranges, and stirring embers under cheesy chips; watching myself turn from pinkish white to ash and mud coated grey and brown, the thick smutty smoke seeping into my hair and eyes, the rain gently soaking through my shirt and running down my back, dripping gently into my jeans, I stood back and thought "Ah yes, I remember now."br /a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_X21YCywhQVs/TGJLUzddOnI/AAAAAAAAD2Q/GCIdi-BSpps/s1600/IMG_2474.jpg"img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="http://1.bp.blogspot.com/_X21YCywhQVs/TGJLUzddOnI/AAAAAAAAD2Q/GCIdi-BSpps/s320/IMG_2474.jpg" alt="" id="BLOGGER_PHOTO_ID_5504044515383392882" border="0" //aOn balance, I think I could carry on missing it quite happily.br /Tiadiv class="blogger-post-footer"img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2411253170651203836-1343539452231387579?l=behindthechild.blogspot.com' alt='' //div

Living with children with profound disabilities can provide a short cut past the social chit chat sometimes. Forget the weather (easy to do when you haven't been outside all week), forget politics (except how they might impact on various policies and allowances), and forget the regular child stress about my child possibly not having very many friends or maybe getting a cold or whether or not to allow your teenager to pierce her ears; we're concentrating on whether this child will survive their latest illness, that child will ever be able to sit upright again, or if the other child should have surgery which might help but might kill them.br /br /It cuts through a lot of the clutter.br /br /So we meet friends, online or in person, for cake or for a week away. And there are smiles and laughs and tears and we swap fears and we talk about stuff which terrifies a large proportion of the population of this country. And we know that death is not a distant stranger, and somehow in talking about it, by acknowledging the reality that we probably will outlive our children, we make that truth something we can live with. And then we do talk about the general life clutter too; we dip deep and we float about in the shallows of conversation, and we make another date, and we do it all over again.br /br /And it's refreshing, and it is so good to be with people who understand.br /br /And it serves to hide so much.br /br /br /Did you know, for example, that I have been blaming myself for my daughter's death for the last three years? And before you rush in to say I mustn't blame myself, that there are in fact good and solid reasons why I do bear some responsibility. Did you know that I've been totally unable to forgive myself for that? And unable therefore to accept forgiveness from anyone else?br /br /Did you know that I have been unable to praise God freely, with my heart as well as my head, stumbling about over my prayers (well actually, you might know that if you've ever heard me), that I have been unable to trust God with the lives of my other girls, despite blaming not Him but myself for Goldie's accident?br /br /Did you know that I have been weighed down, browbeaten, by my guilt and shame over things both recent and long past? And that through all this, I have been calling out, apparently unheard?br /br /If you did know all that, congratulations, because I didn't know it all myself.br /br /I have just been on holiday with friends, with church, and with God Himself. Which is fairly awesome really. And God, and God's people, met with me, and didn't hate me for the things I have done. And I am forgiven, and I am loved, and this is a new day that the Lord has made. And that was just the beginning.br /br /I think things just got real.br /br /object height="385" width="480"param name="movie" value="http://www.youtube-nocookie.com/v/5ErV4pKi3ocamp;hl=en_USamp;fs=1"param name="allowFullScreen" value="true"param name="allowscriptaccess" value="always"embed src="http://www.youtube-nocookie.com/v/5ErV4pKi3ocamp;hl=en_USamp;fs=1" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" height="385" width="480"/embed/objectbr /br /Tiadiv class="blogger-post-footer"img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2411253170651203836-4391825865409427935?l=behindthechild.blogspot.com' alt='' //div

p class="mobile-photo"a href="http://3.bp.blogspot.com/_X21YCywhQVs/TFwX20d5nRI/AAAAAAAAD2I/VGfcCblnS3k/s1600/photo-735279.jpg"img src="http://3.bp.blogspot.com/_X21YCywhQVs/TFwX20d5nRI/AAAAAAAAD2I/VGfcCblnS3k/s320/photo-735279.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5502299075304332562" //a/pToo much to blog about and too much not to blog and both at the same br /time. So, rather than spending time which bits to write down, I br /decided to step away from watching and concentrate on being.pThis afternoon though it was definitely time to watch again. A silent br /but windy camp, most adults at various seminars. Mog relaxing with her br /iPod. And Little Fish attempting wordsearches and sudoku with a friend.pWe#39;ll be back home in a few days and then I#39;ll try to put sonething br /down here. But in the meantime, a brief hello from a very happy Tia br /and family.pMuch love to you all,br /Tiadiv class="blogger-post-footer"img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2411253170651203836-8269752490993456852?l=behindthechild.blogspot.com' alt='' //div

p class="mobile-photo"a href="http://3.bp.blogspot.com/_X21YCywhQVs/TFXHlpldDFI/AAAAAAAAD2A/wdYt9vuS4mM/s1600/photo-770420.jpg"img src="http://3.bp.blogspot.com/_X21YCywhQVs/TFXHlpldDFI/AAAAAAAAD2A/wdYt9vuS4mM/s320/photo-770420.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5500521969534962770" //a/pSo rare I had to prove it.pSo far, so good. Mild panic over missing poles, happily before we left br /rather than after we arrived. Motorway closed, but we still made it br /here by lunch time. A herd of young men descended to pitch the tent, br /gallant women appeared with coffee and diversions for the girls, and br /suddenly the mammoth pack might just have been worth it./ppFor those curious to know what we forgot, it was milk (ours not Mog's) br /and matches. But with a self-igniting stove and coffee on tap just br /next door we might just be set for the week./ppIt's a beautiful evening, Mog and C are off at evening praise, I'm br /sitting outside the tent with a blissfully refreshing breeze cooling br /my toes, all around are the sounds of fellow campers settling in. And br /if it weren't for the fact that Little Fish is lying in the tent br /screaming and sobbing about not being tired whilst simultaneously br /being totally unable to keep her eyes open, life would be pretty br /perfect./ppTia/pdiv class="blogger-post-footer"img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2411253170651203836-2602012726867247132?l=behindthechild.blogspot.com' alt='' //div

Is packing. Packing the clothes, packing the food, packing the medicines, then unpacking to double check, then repacking again in case something got left out in the first repacking. Packing the tent, and realising the bag was strangely light. Searching the house, and the parents' house, and finally finding the poles lurking in a corner of a bedroom. Packing the bedding, and losing the chairs. Packing the purse, and realising you've spent the money you were planning to hand to the carer. Packing the sponge bags, then needing the toothbrushes. br /br /The bus is now packed to shoulder height, and that's without children, C's belongings and tent, and limiting ourselves to one wheelchair per child. Countless electrical equipment will need to be sorted into it in the morning, and our Bond villain camp chair needs tracking down. There's a freezer full of frozen tummies to squeeze in somewhere; a small child who might want some kind of toys at some point, and the tins of food piled high on the passenger seat need shuffling into cubby holes at the back so C can sit down.br /br /How can a Mercedes Sprinter not be big enough to take four of us camping? How have I three times now completely cleared the laundry pile only to turn around and find more things to wash? What will I forget this year? Where is LF's iPod? Do the girls need to take bibles when they can't read? Why is MetCheck predicting six days of rain and the BBC only one? And can I be loyal to the BBC please? br /br /We're off first thing in the morning - or as close to first thing as we can manage. We may have bloggability; if not, then have a good week and please think of Joshua training busily, and various friends whose children are very sick right now. br /br /See you when we get back br /Tiadiv class="blogger-post-footer"img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2411253170651203836-6995968903429953440?l=behindthechild.blogspot.com' alt='' //div

Today, we got to meet a fairly cool group of medical students. A group who had raised £22,000 for charities over the past year, and who had decided to give 1/3rd of that to a href="http://rosy.org.uk/index"ROSY/a.br /br /As Little Fish and lots of friends played croquet, the rest of us less energetic ones chatted to these student doctors. And we talked about their recent placements, and our experience of hospitals and doctors.br /br /And here's the advice I'd like to give - boiled down from what most of us were saying to them at the time.br /br /First of all, listen.br /When you're faced with a medically complex, profoundly disabled child, listen to the parents. Don't panic about the various chronic conditions the child has, see past them to the present acute need. Listen to the parents.br /br /Think about whether you actually need a full medical history. When you have a teenager in front of you, do you really need to ask questions about pregnancy and gestation? Think about the impact some of your questions may have on the parents; remember that some of the information you might want to gather could be fairly sensitive. And remember that we love our children, that we think their lives have value, and we believe their quality of life is generally pretty good.br /br /So, listen. If the parents tell you not to worry about the fact that the child is having a seizure, don't call the crash team. It might just be that seizures are a normal part of life for that child. If the parents tell you you'll never get blood out of that particular vein, consider the fact they may well have met many other medical people who might have tried before you got here. If we suggest that a certain proposed treatment will have negative consequences, accept that we might just be speaking with the voice of experience.br /br /Forgive us when our timelines are muddled. If we've been up all night several nights in a row, we might be having difficulty remembering what day it is today, let alone when this present set of worrying symptoms appeared. We might need to give you more information, in a fairly rambling monologue, than you think you need. Sit down, if you need to - we need to give you this information.br /br /Please, treat our children as human beings. When I tell you my child can indicate yes and no, wait for me to let you know how she does. You might well think I'm delusional, but if you could swallow that superior look and let my child show you what she can do, it would be much appreciated. And if you won't address her directly yourself, please be patient whilst I do so on your behalf. Do NOT stick my child with a needle when I'm only halfway through telling her that's what you need to do.br /br /Don't be afraid to say you don't know. We don't know either, that's why we've come to you. It is OK for you not to know either; if the answer were something simple and straightforwards we would probably not have needed to come to you in the first place.br /br /You are undoubtedly the medical experts. But we are the experts in our children. Listen to our suggestions. Wait until we get through the whole explanation of what we think might work. Even if you think it's ludicrous, please wait until we've finished explaining our reasoning before you shoot us down. And, ideally, please don't shoot us down!br /br /We're not expecting you to fix our children. We're not expecting miracles. Please remember that when we come through Aamp;E, we're looking for a short term solution to a short term problem. We know that our children aren't going to start walking and talking as a result of your treatment - but we also know that they are still children worthy of receiving treatment for their current emergency. There are all sorts of multilayered DNR forms our children may have; please take the time to read them if they are in place before you make assumptions.br /br /Thank you. Thank you for wanting to work with our children. Thank you for coming to see our children, even if they scare you. And thank you for listening.br /br /Tiadiv class="blogger-post-footer"img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2411253170651203836-7849563348614558009?l=behindthechild.blogspot.com' alt='' //div

The first time I met Joshua, he was a small boy playing with his sisters. His older brother, who happens to have Down's Syndrome, was helping his older sister, who happens to have Cornelia de Lange Syndrome to eat her lunch. His father was rebuilding the family kitchen in an attempt to create more useable living space to accommodate the needs of their growing family, his mother was hanging out endless acres of snowy white terry towelling nappies, and he and his middle sister were playing with his newest little sister.br /br /Over the past few years I have seen that little boy grow into a superbly caring young man. A boy who quietly gets on with things, who doesn't complain (or at least not in public). A boy who has watched his mother struggle with her own medical conditions, whilst his siblings have become increasingly and worryingly unwell too. A boy who has watched his little sister deteriorate as she progresses through the various stages of Leigh's Disease. And who has seen his grandfather approaching the end of his life through cancer.br /br /Except, of course, that isn't really true. I haven't seen Joshua watch that. Because, as that was all going on, Joshua was quietly going blind. His vision, never great, grew dramatically worse, and Joshua felt that this was minor compared to what his siblings were going through. He decided that his parents had enough worries, and he didn't make an issue of it.br /br /It's an issue now. Joshua's school have been helpful, despite not having had much experience of a child with serious visual impairments. But now Joshua cannot see the white board. He can't read the work he is supposed to be doing. And the educational system, which has been so supportive towards his siblings' special needs, is not able to provide the equipment he needs in order to be able to access the curriculum and take his exams.br /br /I think at this point, most of us would simply sit down and give up. But Joshua's not like that. Far from giving up, Joshua has decided to do his best to raise the money himself. The equipment Joshua needs is a Low Vision Aid, the a href="http://www.visionaid.co.uk/product_view.php?pid=90007"ReadIT Scholar/a, a href="http://www.techno-vision.co.uk/zoomtext.htm"ZoomText/a and a Rugged Laptop to use it all on. The estimated cost of all this is approximately £6,500. And Joshua is hoping to raise this by having his own sponsored bike ride. Clearly, for his own safety (and for the safety of people around him!) Joshua cannot cycle on public roads. So, during the family's two week summer holiday, he is hoping to cycle one hundred miles on dirt tracks and open countryside. Not only that, but he wants to do so whilst towing his oldest sister in a bike trailer. Not only will she really enjoy the experience herself, it will give the rest of the family a break from having to watch her every move.br /a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_X21YCywhQVs/TFCL1urbJxI/AAAAAAAAD14/h4aXTXJQ5qM/s1600/heckington%2Band%2Btrailer%2B063.JPG"img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="http://4.bp.blogspot.com/_X21YCywhQVs/TFCL1urbJxI/AAAAAAAAD14/h4aXTXJQ5qM/s320/heckington%2Band%2Btrailer%2B063.JPG" alt="" id="BLOGGER_PHOTO_ID_5499048900198868754" border="0" //aJoshua really is an amazing young man. If you would like to help Joshua raise the funds he needs, you can make a donation through a href="http://lifeinourhouse-tina.blogspot.com/"his mother's blog/a. Here you can also find sponsorship forms, if you would like them. If you are unable to help financially, then Joshua and his family would value prayers as they try to find the funds to get this equipment for Joshua.br /br /Thanks for reading,br /Tiadiv class="blogger-post-footer"img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2411253170651203836-3472019553532330240?l=behindthechild.blogspot.com' alt='' //div

So, today started badly with the realisation that I had run out of one of Mog's meds; one which the chemist doesn't keep in stock as it is too expensive.br /br /But then it got better, because Mog managed to be hoisted into the new chair, and managed to contain her unhappiness until it subsided and she was comfortable.br /br /We went off to the local orthopaedic hospital, where things got worse when the receptionist in one part of the building wouldn't accept the return of a wheelchair and wanted me to wait and track down the person who had loaned it and asked us to return it there today. It would have been a long wait as she was not in today.br /br /Then they got better - only a ten minute wait in X-ray. And worse, because yet again the children's play area had been made inaccessible to anyone in wheelchairs due to extra chairs being placed there. And then better again, because the radiographer promised to bring it up at a staff meeting tomorrow.br /br /And then things got better yet, with only another ten minute wait to see Mog's surgeon. Who is now happy that Mog's hips are in exactly the right place and reasonably confident that the metalwork is not causing her pain. And who then threw us for a loop by suggesting intrathecal baclofen for her spasm, reassuring us that it was a very minor op. All experiences welcome.br /br /Then things got somewhat worse, as I realised I did not have my purse. And that it had not been handed in at any of the receptions. But better again, when I scraped up enough change in the bus to find some lunch for Little Fish as we went off to get her wheelchair repaired. And better yet when her chair was kitted out with four new outdoor wheels. Apparently she's had indoor wheels for the past two years and no one has noticed. Grass and mud might just be a little friendlier now. And much better when we got home and found my purse on the settee.br /br /Betterer and betterer; Nanny McPhee amp; the Big Bang proved to be a hit with everyone, although I do hope Little Fish gets over her desire to tell everyone she is all covered in poo before we go to New Wine (Church camp).br /br /And then hurrah for inclusive siblings; Little Fish singing songs and, unprompted, finding verses for Mog to join in with. There's something pretty special about listening to her sing "If you're happy and you know it, sit in your buggy."br /br /More minor niggles; the realisation that Mog's Blue Badge runs out next week and I still haven't found anywhere to get her passport photos done. I haven't had the van's air conditioning fixed yet, there's Queen Anne's Lace growing instead of grass in the back garden, I don't think I have enough semi-respectable clothing left to last a week under canvas, we keep eating the food I keep buying for camp, and I still haven't checked whether the cat vomit has eaten through the tent canvas. Ought to get onto that really.br /br /Still, on balance, not a bad day I think.br /Tiadiv class="blogger-post-footer"img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2411253170651203836-1743341544366274122?l=behindthechild.blogspot.com' alt='' //div

It's not totally tweaked yet. a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_X21YCywhQVs/TE35iV5xynI/AAAAAAAAD1w/3tItx41VkgM/s1600/IMG_2447.jpg"img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="http://2.bp.blogspot.com/_X21YCywhQVs/TE35iV5xynI/AAAAAAAAD1w/3tItx41VkgM/s320/IMG_2447.jpg" alt="" id="BLOGGER_PHOTO_ID_5498325088479595122" border="0" //aBut I think I'm starting to see how it might just work for her.br /br /br /Meanwhile, noises off "span class="blsp-spelling-error" id="SPELLING_ERROR_0"Mummeeee/span, span class="blsp-spelling-error" id="SPELLING_ERROR_1"Mummeeeeeeeeeeee/span!!!!!!!! Now I am asleep, you need to come into my room and sort me out."br /br /Nice try...br /Tiabr /span style="font-size:78%;"(span class="blsp-spelling-error" id="SPELLING_ERROR_2"ps/span. Hi A - she is telling the truth, I really have!)/spandiv class="blogger-post-footer"img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2411253170651203836-5627369665675628538?l=behindthechild.blogspot.com' alt='' //div

Most evenings, I read Little Fish and Mog a story together before I shovel them into bed for the night. And how it generally works is that I read the story to them both, then Little Fish takes the book and "reads" the story back to Mog again; lots of audio description about the pages of the book and a little bit of narration too, especially if there is a shouty dialogue about a naughty child or pet.br /br /Last night, the tables were turned. I dug out an old story cassette. Popped it into a tape recorder (ancient technology now!), plugged the recorder into a special latch box, plugged Mog's switch into the other end of that same box, and Mog read Little Fish a story instead.br /br /Tiadiv class="blogger-post-footer"img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2411253170651203836-4793347982571411289?l=behindthechild.blogspot.com' alt='' //div