tag:blogger.com,1999:blog-13677445213960575852011-08-17T17:46:04.760+01:00Ramblings of a disorganised mother.Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.comBlogger451100tag:blogger.com,1999:blog-1367744521396057585.post-2181717899939970682011-07-30T16:11:00.003+01:002011-07-30T17:52:33.171+01:00Today the sun is shining and the sky has just a few fluffy clouds, just like it should be at the end of July.<div><br /></div><div>A few clouds in my heart this week. Two special kids members had to say their final goodbyes to their children and it's heartbreaking. A friend posted on facebook that his niece had passed away too this week. Weeks like this make me want to hug my kids tight and never let go. It also makes me so grateful that R is healthy and her condition now isn't life threatening but behind those thoughts are the flashbacks to when she was a baby and we were at real risk of losing her.</div><div><br /></div><div>It's not often these days that I'm taken back to the night I thought R would never grow up but for some reason this past week has meant it didn't just creep up on me, it leapt out and soundly slapped me around the face - very hard.</div><div><br /></div><div>R was born a few days early, everything was expected to be normal but she had other ideas. I was lucky enough to be able to have a water birth but she was a long time in arriving. I went into labour on the Saturday and she took until the early hours of the Tuesday morning to finally put in an appearance. She wasn't in any hurry to come out then and the midwife had to break my waters as she was coming out with the bag intact!</div><div><br /></div><div>When she was lifted out of the water she cried but silently. It was surreal, like watching a baby cry but with the sound turned off. Her skin was a bit pale and her lips had an orange tinge but otherwise she seemed ok. The midwife said it was possible she had caught a cold and lost her voice but they'd keep an eye on her. She was sleepy and didn't feed that well, I had to keep waking her up and she tired easily. Wednesday morning the midwife woke me about 8am to say she'd slept all night! What a good baby! A few hours later that had moved on to "we're a bit concerned so we're putting this thing on her toe to measure her oxygen levels". I'm so glad I had no experience of a pulse ox machine before or I'd have been so panicked that her levels never went above 85% even asleep.</div><div><br /></div><div>After so long in labour I was like a zombie at that point. When the senior midwife said the would need to transfer her to special care in Lancaster and did I want to go with her I said "no, I think I'll go home". Not sure what I was thinking at that point, not sure I was capable of thinking anything much to be honest.</div><div><br /></div><div>Wednesday afternoon saw us meeting with the ENT consultant in special care in Lancaster, I did change my mind and was transferred with her, who would put a camera down her throat to see if they could see what the problem was. An hour later he was back to say she had webbed vocal cords and that she would need to be transferred to a specialist centre, he couldn't say where as he'd need to find someone who knew about this very rare condition, but to be prepared to be transferred anywhere in the UK the next day. We were relieved to find out that evening that we'd be going to the children's hospital in Manchester the next morning and not down to London as we had feared.</div><div><br /></div><div>Thursday morning saw me being rushed to a midwife for a discharge so I could go with her then a wait around for the team to go with us. Not sure why I wasn't alarmed when they said we couldn't leave without the consultant and an aneasthatist in case R needed a tracheotomy performing on the way if she struggled. I think by now my brain had just gone into survival mode and emotions were just gone. I guess I know what it means when people say they were numb with shock. I did think it was odd at that point that we'd arrived the previous day in hospital transport with a driver, paramedic and midwife with R in a baby seat and no monitoring yet here we were with her in a travel incubator, lots of wire and machines, a midwife, driver, two paramedics, ENT consultant, aneasthatist and me!</div><div><br /></div><div>We arrived at the childrens hospital on the worst possible day. Out the front were press and tv vans and far as you could see. Police and security on the doors and no one allowed in without ID. I hadn't heard at that point but several children on the cancer ward had been given feed that was contaminated with a virus or a bacterial infection and died. Worse still, as we were taken into ICU with R the curtains in the next bed were drawn one of the kids from that ward was in there and had just died. There I sat in a daze with tearful family and staff going in and out of the curtains wondering if I was having a terrible nightmare.</div><div><br /></div><div>Shortly after R was put into a cot/incubator that looked like something from a science fiction film we me the wonderful Mr R, ENT consultant and amazing man who is still R's main man to this day. He explained so much about what needed to be done and that R would have to stay in ICU until surgery on Monday. She would need lazer surgery to remove the webbing but until that was done, and afterwards at first, she was at risk of losing her airway altogether and could need emergency surgery at any time to keep her breathing. </div><div><br /></div><div>Over the weekend family came and went. My then sister in law came in and saw her and ran straight back out in tears. Still in a state of shock I was puzzled and couldn't work out what had upset her! I'm surprised more people didn't do the same with all the wires, machines and the almost constant beeping from her machines and others.</div><div><br /></div><div>ICU at that time had no parents accommodation so I was found a bed in a room on another ward and got used to being a resident parent over the weekend. About 6am on the Monday morning a nurse came to get me to give R a final feed before she had surgery later that day and told me she had had to be moved from ICU to make way for an emergency and was now the heart ward opposite. R didn't want to wake for a feed and after a few sucks and much moaning from the sleepy one I gave up and went for more sleep.</div><div><br /></div><div>R was transferred to the ENT ward mid morning so another ward for me to get lost in! She had a cubicle shared with another baby and a nurse between then so we just hung around there until she went to theatre after lunch. Mr R had been to talk to us again and I was happy that things seemed to be happening and it would all be straightforward! I think because the staff were so fantastic and explaining everything they were doing and why I felt at ease and not worried. Sometimes ignorance really is bliss!</div><div><br /></div><div>A few hours later the worry did begin. Mr R came to see us after surgery to say that the webbing had been far more extensive than they thought and much thicker. He said if he'd known beforehand he wouldn't have used the lazer as he expected a lot of swelling and it was quite likely R would need a tracheotomy and they'd see how she went over night. She came back to the ward in an incubator with tubes and machines and wires again but now on oxygen and nebulizer to keep the swelling at bay. She was then pretty much watched over full time by a nurse while I sat in the corner dazed again. </div><div><br /></div><div>Every couple of hours the nurse had to go off with another nurse and get adrenalin to go in the nebulizer to keep R breathing. That was fine until the night shift started! A full ward, several kids having had surgery that day and just three nurses and one auxilliary. About 11pm R's breathing got worse again so the nurse left to go and get her next dose. I'll remember the next few minutes for the rest of my life. R was laid there looking at me breathing hard when suddenly her eyes fixed on mind and all went quiet for a few seconds. Next minute alarms went off and she started to turn blue - that has to be the most terrifying moment of my life.</div><div><br /></div><div>No one came so I went out of the cubicle and saw the other two staff down the bottom of the ward. Did I yell? Did I call out? No, I dashed down the ward as quietly as I could so I didn't wake the other kids!! I always thought I was calm and coped with emergencies but for some reason I wasn't registering that my baby was blue and not breathing, all I could think of was "don't wake the patients"!</div><div><br /></div><div>Luckily they ran in and the other nurse came back and with a lot of help she started to breathe again. I actually don't remember much of the next hour apart from people going in and out and me being sat in the corner terrified. On duty docs came and went and by 12 they were waiting for a space in ICU again, this time R was the one going in and someone else was having to make way for her.</div><div><br /></div><div>1am the nurse grabbed a pram from the corridor and I stood at the end of the ward with the door open ready. We made a mad dash through the hospital with R in the pram to ICU, me opening doors as quick as I could to get her there. Another moment that has always stuck in my head was Mr R following quickly behind us having clearly been called from his bed, tie wonky and hair all over the place. </div><div><br /></div><div>3am R is in surgery having a tube inserted to put her on a ventilator.</div><div><br /></div><div>and in comes E and S is being a pain so I'm logging off for now.</div><div><br /></div><div>Well done if you got this far, I might get back later!</div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-218171789993997068?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-10938241356762372382011-05-15T15:38:00.002+01:002011-05-15T16:27:09.224+01:00<div>I had a look back at my old posts and realised it's been over 2 years since I started this blog! There are a couple of fairly large gaps but I didn't think I'd been on here that long or blogged that much!</div><div> </div><div>It started as somewhere to put my thoughts, not sure what happened along the way but it sort of changed into a more newsy type thing. </div><div> </div><div>J has been away since Friday at The Rally Show down near Oxford so I suppose I've had more time to myself this weekend and so my brain has had free rein to think a lot. Not always a good thing when things aren't right but sometimes you need a bit of space to just think and ponder a bit.</div><div> </div><div>I think todays blogging has come about by me having what I'd call an "approaching 40" phase. In 6 months there is a special date - 11.11.11. It also happens to be my 40th birthday and it's set me off thinking at lot lately about what I've done so far with my life and where I'm going still.</div><div> </div><div>For the first time I feel like I'm a bit of a grown up now, the quiet little mouse evolved over the past few years, when you have a child with special needs you learn to develop a thick skin and learn how to make your voice heard. Takes a lot of practise but I think I've got the hang of it now. When R was little I always believed what I was told "we don't supply that" "no, she can't have that" etc etc. What I now know is that's just the starting point of negotiations or the point at which I start politely to disagree then start to stamp my feet until things are sorted. Education thought they could tell me what R could and couldn't have, they found out they were mistaken and nearly found themselves at a tribunal before they agreed with me and named R's current school on her statement as the most suitable place for her. </div><div> </div><div>For the first time in my life I feel comfortable being me. I know I am overweight but I'm tackling that slowly and have joined a gym as well as eating less. With not having a car anymore I'm having to walk more too. I am trying to pay more attention to myself, using face cream and taking more pride in my appearance but I have never been, nor will I ever be, a domestic goddess who never leave the house without full make up. Make up is reserved for special occassions because I just don't feel like me if I'm hiding behind make up. </div><div> </div><div>I have spent the last 19 years being wife and mum, it's a job I love and even though it's a real 24/7 job I wouldn't swap it for the world. I tried to work out what I do on the average day and came to the conclusion that I don't have an 'average'! Every day is different and I'm happy with that. </div><div> </div><div>I also realised just how much all our lives are affected by R and her problems and issues. Every day we have things that come up and I'm so used to it now it's our normal. We're lucky that she's it and healthy generally with no long term health problems but sometimes the other issues can be overwhelming and such hard going I want to cry.</div><div> </div><div>I spent some time earlier wondering what I do with my time because I never have enough time to fit in everything I want/need to do. I worked out that some weeks I am spending up to 30 hours doing things for others outside the family as a volunteer in different places, that'll explain a fair bit of it!</div><div> </div><div>I help run 3 local Freegle groups, help out when I'm needed at the family drop in centre, I am parent representative on the local Early Support team, I am on the Learning to Change Steering Group for Cumbria as a parent, I am on the committee for R's school Family and Friends (PTA) as well as the wife and mother role and anything that comes up from that.</div><div> </div><div>I sometimes think I should stop doing some of those things but I don't want to. I did drop the secretary roles from the drop in and family and friends which did help but everything I do also benefits my family and the families of others like us.</div><div> </div><div>Well, waffle has to end here because the little dude is pestering me for the pc and I did say he could use it after me.</div><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-1093824135676237238?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-3147523332635202532011-04-23T21:16:00.002+01:002011-04-23T21:39:02.168+01:00We've had quite a run of catching up with friends just lately. Last week we were at Kielder with 7 other families that we know via special kids in the uk and had a fantastic time. Some people we see a lot more often than others but it's nice to have some time together all with our own kind of 'normal'. <br /><br />I know that one friend who's blog is on my list on the right 'witty name to follow' has a few photos up of the week. I need to get off my arse and find my camera lead and upload my photos soon!<br /><br />I often feel that we don't sit comfortably within a box as a 'normal' family with the differences in the kids ages and R's disabilities. Then again we don't fit that well with some families who have kids with physical disabilities, but we do have a far better understanding of an alternative 'normal' with them than people who have average teenagers. I guess we all have our own definition of normal. Having a holiday with others where I don't have to spend time explaining to people that R is different to the average 17 year old is such a refreshing change. Often people ask about her then their eyes glaze over when I try to explain about Di George Syndrome and autism and learning difficulties etc etc. In the past I have been told by well meaning friends "at least she looks normal"!! Oh yeah, that's an old classic. Do they think that in some way makes up for the fact she CAN'T do a lot of things that the average girl her age can do without support?<br /><br />We're having to face up to the changes coming up in her life now. She's just turned 17 and in 2 years will have to leave her fantastic special school and move on to a special college or somewhere else. For years I kept my head firmly buried in the sand about the future for her, when she was small I was too scared to look forward as I didn't know what future she may have. As a baby I didn't even know if she'd have one. <br /><br />Anyway, I now have a wonderful 17 year old daughter who is generally happy and making progress at her own pace. She has a group of friends and is a lovely caring girl.<br /><br />The other day we spent a bit of time at the local park with another friend from special kids who was in the area - her blog is there too, 'family blog with a difference. Another one of many families that get together through special kids, everyone with different families, different disabilities but so many struggles that are the same when it comes to our kids. <br /><br />Easter weekend, kids at home on and off, just realised R isn't home yet from her Dads and I thought she'd be back by now! We're off to my parents for the day tomorrow, no doubt with moans from the kids when they realise we've all got to walk there now we don't have a car! <br /><br />J seems better this week. I'm pretty sure he had skipped a few doses of his medication, especially as when I did have a talk with him the other evening the first thing he said was "you don't have to worry about me, I am taking my meds" and I hadn't even mentioned that. Oh well, I hope it's just a blip and I was getting my knickers in a twist and blowing things out of proportion. <br /><br />For some reason my last post appeared as one long paragraph, not sure why it did that but hope it's not going to do it this time. I even when back and put paragraphs back in but it didn't save them. I hate trying to read something that's not laid out properly. I could launch into a whole long rant about bad English and grammar etc but I'll save that for another day!<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-314752333263520253?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com1tag:blogger.com,1999:blog-1367744521396057585.post-39840434395978905942011-04-11T23:20:00.003+01:002011-04-12T00:01:55.196+01:00Tomorrow we are off to Kielder Forest for a few days with some great friends and kids. We went last year and had an amazing few days and looking forward to doing it again with a slightly different bunch to last time. Thanks to Kerryanne for posting links to her blog I decided it was time to resurrect my blog properly! So much has happened since last year. J lost his PCV licence and is now on a car licence renewed annually due to medical reasons so that meant he lost his job driving the buses. After a few months of work with them again in the summer selling tickets ended up unemployed again in August. After a lot of talking he decided to go to college to retrain as an electrician. That means with neither of us working we're totally skint. Sold the car last month, we decided it was now a luxury we couldn't afford any longer. On the upside, I've already lost 4lb and we are all fitter! We both applied for jobs last year and got nowhere. After a few months there weren't even any jobs going to apply for. I tried again before Christmas and got one interview but with J at college trying to sort out childcare around me working and him studying was going to be a ballache. Almost impossible to get anyone to have an almost 17 year old who can't stay home alone for very long. We do get direct payments to help get a carer for R but it's only 3 hours a week so that wouldn't go far. I decided that I'd look at going back to education - last schooling was GCSE's in 1988! I've signed up with the OU to take a level 1 certificate in Health and Social Care starting in October. It could lead to a degree in the long term or I may do this one and maybe a level 2 and then get a job, who knows. E finally made up her mind what she wants to do, she finishes college in a couple of months. After much dithering about doing nursing she decided she wants to do that but not work in a hospital so she applied to Learning Disability degree courses at a few uni's. She got an offer from Northampton and provided she gets the grades she needs she'll be heading 4 hours away in September!! So proud of my big girl :D R is finally settled in post 16 at her school. Took a bit of settling in but she's blossomed so much lately and really grown up. Still often hard work mentally with repeating questions and so on but she's lovely. Her school is moving the 14 to 19 students to a new building on the site of a local secondary school in September and she's been involved in a joint project with that school and her classmates that has gone really well. After lots of teamwork exercises and lots of talking about potential problems they had a weekend away at Brathy. She's now been invited to the other school's school council meeting as a representative of her school to give a presentation! J is pretty good - I think. Ups and downs are pretty much daily and sometimes hourly but he isn't worrying me too much lately. He has closed windows quickly a couple of times when I've come into a room so I guess he's been web browsing things he'd rather I didn't see but it's not ongoing. Just wish he'd be more open if he's pondering and searching for stuff. At long last we are getting long term support. He has had a social worker for a few months and through him I now have a carer support working from Making Space who drops in often for a cuppa and chat. They also organise carer get togethers for people caring for someone with mental illnesses which is lovely. No need to explain things when you get chatting! I also got a carers grant which almost paid for a years membership of a local hotel gym and pool which I started last week. Here's hoping with all the walking, swimming and going to the gym there'll be less of me by the end of the year. I've lost 2 stone since J was in hospital. My size 24 jeans were tight and last week I bought a pair of size 20 straight jeans and they fit! I don't even have to undo them after eating and when sitting down! Time to wander off to bed I think, up earlyish tomorrow to go into town to pick up a hire car for our holiday and buy S some new trainers.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-3984043439597890594?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-70914122894651865642011-04-07T19:04:00.001+01:002011-04-07T19:20:23.137+01:00Well, I thought it had been a few months since I posted, didn't realise it had been more than a year. To be continued .....<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-7091412289465186564?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-70200534737288838372010-02-28T02:15:00.002Z2010-02-28T02:20:52.691ZI didn't realise it had been so long since I blogged. I did take the decision to stop for a while mostly because it seemed to be getting so negative and moany it wasn't helping. Anyway, after an awful few weeks with R and her almost collapsing in my arms in distress today I sat down tonight in tears after everyone was in bed and wrote my first ever poem. <br /> <br /><em>Since the day you were born you were happy and bright</em> <br /><em>the sun shines through your hair gold and bright</em> <br /><em>then hormones and stress did turn up one day</em> <br /><em>little did we know they seemed to be here to stay</em> <br /><em>sometimes I look at your distress and stare</em> <br /><em>on days like this it feels like Rebekah's not there</em> <br /><em> <br />Oh where did she go I'm sure she was here <br />here's hoping that she's still somewhere near <br />the hope and the dreams seem so far away <br />on a horrible stressful and upsetting day like today <br />today I looked at your face tearful and bare <br />and I knew that again Rebekah's not there <br /> <br />the world must seem such a confusing place <br />it only takes a minute to see that in your face <br />the hurt and confusion for all to see <br />but you hold it in and only show it to me <br />my happy smiling girl seems to have vanished into thin air <br />cos right this minute it feels like Rebekah's not there <br /> <br />I hate that this world can be such a cruel place <br />a few misplaced words shows the hurt on your face <br />a few careless words, a comment without thought <br />a snide remark that leaves you distraught <br />I'm sure that she's here, I'm not sure where <br />today</em> is a day that Rebekah's not there. <br /></em><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-7020053473728883837?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com1tag:blogger.com,1999:blog-1367744521396057585.post-47217442837837339122009-11-03T14:02:00.002Z2009-11-03T14:22:58.762ZWhat to call this one? Will think about it and add a title when I'm done methinks.<br /><br />I saw the doc for a full breast examination and he felt what I did and thinks it's normal tissue lumped together and sitting over a rib but to put my mind at rest he referred me to the hospital breast clinic and I go there Thursday of next week for an ultrasound scan and any other tests they decide on. Got the letter today which warns appointments can run for up to 3 hours depending on the tests they do! Right under that is the bit about parking charges - grrrr. I don't feel majorly worried about it but was upset to get the questionairre with the letter about family history of female cancers. <br /><br />I'm starting to feel a bit more like myself some days, not so much others, but it's a start. Waiting for an appointment with the therapist now, on the waiting list. Is there anything that doesn't have a waiting list these days?<br /><br />Christianity.<br /><br />Not blogged about religion before, not something I talk to anyone about much as to me belief is a personal thing rather than something I want to discuss and argue with anyone over. Why is it that some people seem to be threatened by someone saying they believe in god and seem to feel the need to try to disprove their beliefs?<br /><br />I am a Christian. I don't go to a church very often because most of the ones I have been to I've come away from feeling that too many of the people there call themselves Christans because they turn up once a week in a nice outfit but the rest of the week look down on others and don't behave in a very Christian like manner. I did go to church last year, tried the Spiritualist Church as I felt their beliefs are the closest to mine. I enjoyed it but the service being on a Saturday early evening isn't easy to get to with the kids and generally doing stuff but it's not the going to a building that I find important.<br /><br />To me a lot of people learnt about Christianity in school and God was portrayed as a man because Jesus was his son so he must have been a man. You then grow up with the image that God is a man peering through the clouds and is great and good and that then leads to people thinking that God can't exist if bad things happen. To me God is a spirit, he's there, he's here and he's in the hearts of believers. Angels - one of the first things kids know about Christmas is the Angels. Beautiful creatures with wings that appear to us. To me I see Angels as the spirits of people who have passed on to be with Jesus. I know some Christians will disagree with me but we all have our own way of interpreting things and that's mine.<br /><br />I believe in God, I believe that Jesus came to earth to show people the way. The Bible which a lot of people feel is mega important I see as a great book that contains people's opinions mostly rather than something that includes rules. I know there is guidance there that helps a lot of people but too many conflicting bits for me to put it up there as a major influence. To me being a Christian means that I always try to be a good person, treat others well and help others when I can. To teach my kids to respect others and property and to behave politely, I think on the whole I do all that. I'm not perfect, I make mistakes but I carry on.<br /><br />A couple of weeks ago two angels came to my house, not the spirit kind, two lovely ladies from a local church who came to help us. When J was ill one major problem was debts. He wasn't keeping up with payments on things and wasn't dealing with them so they grew. He was on sick pay so had less money and people were demanding more and more from him. A few weeks ago I saw a poster about Christians Against Poverty (CAP) and their debt service so I gave J the number and he rang to make an appointment. We had to wait a while but we're so glad we did. Once our budget is sorted they will contact the people we owe money to and we'll make one payment a month to CAP and they'll negotiate and make payments on our behalf. The stress that was lifted that evening was huge.<br /><br />J and C, the angels, came to our home armed with a large box of chocolates and a file of paperwork. One of the first things they said was "we are here because we believe God loves you and you need some help". They then explained that our beliefs don't make any difference to the service they offer and really religion wasn't mentioned much after that. <br /><br />The service is amazing, it's either totally free or you can factor in a small donation to your monthly account so they can go on helping others. After seeing so many debt company adverts all over the place that take advantage of people and that have lots of small print finding people who are there just to help was a breath of fresh air. <br /><br />Oh, we now have an addition to the family! A lovely little pussy cat called Molly! Phone the rescue people on Saturday to enquire, bought her bed and bits an hour later and picked her up Sunday lunchtime! She's a beautiful girl, rescued as a stray on a farm and produced 6 kittens the following day. She's only a baby herself, they think she's a year old at the very most. Kittens all rehomed and mum now spayed she's at this minute curled up on a chair behind me fast asleep. I'll have to get some photos later.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-4721744283783733912?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com2tag:blogger.com,1999:blog-1367744521396057585.post-2794584839033258952009-10-14T13:51:00.004+01:002009-10-14T14:25:44.027+01:00Saw the doc on Monday afternoon, J was meeting me afterwards when he finished work but doc was running 10 minutes late so he got there a couple of minutes before I was called so he came in with me. Talked about test results from swabs after period problems and all came back clear so it seems it was just a blip in my hormones and unless I have any more problems that's hopefully nothing to worry about now. Talked about how I was feeling and he did a questionairre with me and said that it is depression rather than just a build up of stress, told him I'd recognised I was withdrawing and struggling to cope with everyday stuff but that I'd tried for some time to get myself back on track and failed. He gave me a prescription for anti depressants and also referred me to talking therapy, said it was up to me to decide if I wanted to commit to taking the pills for a few months or wait until I've started the therapy. I said I'd start the pills probably rather than waiting as I've been waiting to see if I improved and didn't want to start worrying about getting worse. Been down that track a few years ago and ended up being virtually unable to get out of bed in the mornings, already finding it hard to get out of bed and do anything.<br /><br />Doc said he was surprised as a lot of people choose the other way around! Made me wonder why he gave me that choice to make. I think if I'd not been feeling this way for long I'd have waited but, well, I started taking them yesterday. I decided that he wouldn't have given me them and let me decide if he didn't think I needed them.<br /><br />*edit* forgot to add the other bit about breast lump. I go back at the end of next week to see doc and pracise nurse for a full breast examination. He said that it's best to do that mid cycle to rules out it being a hormonal lump, especially with my recent blip.<br /><br />Friends - the way I've felt lately if someone had asked me how many friends I have I wouldn't have come up with many because I've suppose I feel pretty worthless at the moment. It was nice to get replies on here and from my FT friends by messages there, most made me well up or shed a tear, sometimes everyone needs reminding that people are there for them. Trying to make myself get on and post there later and catch up with things, suppose I just want to slip back into it quietly and not post much about me at the moment. Mostly I think I withdraw from things because I don't reply to others like I should do and then I feel guilty etc etc and feelings don't make sense anymore.<br /><br />J has been great, comes home from work and makes the kids do stuff to help. Helps in some ways as the house is now a bit straighter, other ways makes me feel more useless cos I should have done the jobs round the house during the day instead. After his problems earlier in the year though he understands and listens and is just being a wonderful husband right now.<br /><br />Head feels less confused today, blogging helps, probably talking therapy will too, not sure that it will but I'll go in open minded and hope that it does. I'm not a big one for talking about feelings, putting them down here helps more I think because I can stop and think or go back and change things if words don't come out right the first time.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-279458483903325895?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com3tag:blogger.com,1999:blog-1367744521396057585.post-14573476507624145912009-10-12T11:31:00.002+01:002009-10-12T11:48:28.215+01:00I don't know how many times I've opened this page to post then closed it again in the past few weeks. So much to say, don't know where to start and half the time my brain can't concentrate on what I'm doing.<br /><br />Been an awful year, seems every time something gets sorted something else goes wrong. Stop the world I want to get off! J is still fairly up and down but mostly doing ok. Saw the GP when he was feeling bad again and GP was annoyed that the psychiatrist had effectively left him in limbo so he chased them up and he's seeing her again later this month. When we saw her in June she said that she'd make an appointment for 6 months but he could call and see her soooner if he needed. Said she's send out the appointment with contact numbers on after we'd seen her but he is now on the 9 month waiting list for psychotherapy dept! Guess what? Still not got a letter with contact numbers!<br /><br />E stuffed up her AS level exams and came out with fails, her coursework was good and teachers were shocked that she'd failed and school said she could go on to second year to do A levels if they agreed to take her back but one teacher said no and they gave her 24 hours to decide what to do!! Two days later she told them to stuff it and went to college instead and is now on a 2 year diploma course on Health and Social Care. I think it'll suit her, she is good with people and very caring. She's happily settled and started her first placement today at a care home locally.<br /><br />R went to hospital in July where they found her aberrant subclavian artery is again pushing into her windpipe. Docs said they'd get cardiology to review her urgently and see her again soon, guess if we've heard anything yet from them? Go on guess - the answer is easy! Another round of phonecalls added to my long list of things to do. Winter is coming and as soon as it gets cold her breathing is affected, you'd think it was something minor for all the urgency they put on it. Her behavior at home is awful, she burst into tears if anyone shouts, stomps around and grunts a lot. Can't speak to her without her putting her head down and whining loudly. Most frustrating is that she asks a question then never listens to the answer to either whines thinking you said no when you say yes or just keeps asking the same questions.<br /><br />Me - I'm not coping well at the moment, I think everything has finally caught up with me and I'm on a horrible downward spiral. Last month had a very strange and long period, went to the docs when I stopped bleeding and he sent me for swabs but it looks like they came back normal and I go back to him this afternoon. Felt so up and down I thought it could be hormones but who knows. The fact it took nearly 3 weeks to get results confirmed as being in added to the stress. Oh, and my smear test last year showed thrush! Nice of someone to have finally told me!<br /><br />I can't get motivated to do anything, taken me weeks to finally get posting here. Feel myself withdrawing from people and online forums etc but can't stop myself from wanting to hide from everyone. Admitted to myself and J the other day that I'm not coping and that helped but I think I may need to admit defeat and ask for anti depressants again, not needed them in years but I'm struggling more and more. Can't concentrate for long, spend all day trying to get half a dozen things done each day and by evening I'm worn out but haven't got anything finished. Messed up the bills last month, got confused about dates and ended up with things bouncing like rubber balls all over the place so had bank charges going out of my already empty accounts. <br /><br />Desk is piled up with letters to deal with that I just keep adding to and can only just see the screen over the pile. House is a tip, kids are lazy buggers and I'm fed up with being the 1 person who does everything around here. <br /><br />To top it all, last week we were in bed and found the ultimate passion killer - "I can feel a lump in your breast"! Yep, just what I needed right now. Definately a lump in my right breast so that's another thing to see the doc about later. A big negative to having large boobs is that they're very difficult to examine yourself or for someone else to check. Too much boob and skin to feel properly but this lump once found is very definately there.<br /><br />What can go wrong next? I just want to go and curl up on the bed until it's time to go see the doc and cry. Had an awful cold about 10 days ago that's still lingering, cough followed that's kept me awake for hours on end several nights and just feel like crap.<br /><br />There, I sat long enough to type this, gotta just press publish and go dry my eyes again. If anyone gets this far, well done, and you know why I've been quiet lately.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-1457347650762414591?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com5tag:blogger.com,1999:blog-1367744521396057585.post-61088316126356073602009-08-28T13:38:00.002+01:002009-08-28T13:45:40.234+01:00Well, here we are near the end of the holidays again YAY! School uniform just about sorted and kids fed up with being at home.<br /><br />Tomorrow we're meeting with some of our Special Kids friends and on Monday are hoping that another family will have time to call in for coffee one their way home from a weekend away. :D<br /><br />Another up and down week, council housing officer with one brain cell screwed up again and I'm waiting on a reply to an email sent to her yesterday and then forwarded to her boss. <br /><br />E is going to see the genetics people next week to discuss blood test to rule out her having the genetic deletion that R has. On paper she has a 50% chance of having it as the girls dad has it but as she shows no signs it's not that likely but still possible. Would rather know definately before she gets older and may want kids of her own.<br /><br />I've spent a lot of time this week sorting out piled up boxes of stuff from our room. It's the general dumping ground for everything that gets moved from other rooms when I decide to clear out things. I am officially a slob but I don't care, there are far more important things than dust and a tidy house. I filled the sink to wash up, it's still full but I'll get it done before the water gets too cold. Should have got the dirty washing off the landing and put a load in the machine but I'll do that later too. I'm sure I've got another few days before we start to run out of clothes, must do some ironing though, I'm wearing my last clean and ironed tshirt today.<br /><br />I always find this an emotional time of year. A week at camp with lots of other families of kids with special needs is a surreal but wonderful experience. Then it's home to get back to daily life and I miss so many people that I won't see before next year or even the one after. Makes me appreciate those close to me more as well, confusing, emotionial yet happy, and more confusion.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-6108831612635607360?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-70868522743561033462009-08-24T14:20:00.004+01:002009-08-24T15:58:49.347+01:009 days until school starts again!!!!!!!!<br /><br />Phew, 6 weeks of the kids at home is nice in some ways, frustrating in others and just far too long for all concerned. Kids are getting bored, money is all gone and the weather is crap mostly. R is happiest with routine or at best knowing how long the current activity or whatever we are doing is going on for and what's coming next so long holidays with no plans cause us all stress.<br /><br />Thankfully, the Special Kids in the Uk annual camping trip and family day falls in the middle of the holidays so breaks it up nicely.<br /><br />This year was the 4th year, 3rd year at this site, and it was the best so far! The campsite go out of their way to put up with us lot descending on them and it's a fantastic site for families. This year we were in a slightly different area than before and had a nice circle of tents all facing in towards the centre of that area. Met some people from previous years and lots of lovely new people too. :D Lots of days spent off out on local trips, one day to Drayton Manor thanks to Tesco vouchers and the family day on the Saturday. Evening spent outside the tent or someone elses with beers in hands relaxing in good company.<br /><br />I didn't realise just how relaxed we'd got until we got home and actually felt refreshed. Kids didn't fight much, or groan too much at having to wash up. E helped a lot, R helped other people a lot and S just spent most of his time at the park!<br /><br />Feeling very deflated now, it made such a change to be surrounded by people who just understood that R is different and accepted her as her. All the kids are so different but they've all got their own special needs. Siblings mix with siblings and the special kids are just accepted by all for who they are. No having to explain that R looks like a child with no special needs but is 15 going on 8 in a lot of ways. She is a teenager in some ways, hates to wash, change clothes and gets moody, but in others she's more little girl like.<br /><br />Right, need to try to stick a picture in here, wonder if I can get it right first time?<br /><br /><br />Nope, didn't get it right first or second time!<br /><br />HELP!<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-7086852274356103346?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-31247871704223202402009-07-27T09:58:00.001+01:002009-07-27T09:58:53.102+01:00<p class="mobile-photo"><a href="http://4.bp.blogspot.com/_tlkVtSRXuuw/Sm1sTYTfWtI/AAAAAAAAABQ/478euIArl8o/s1600-h/picture-733103.jpg"><img src="http://4.bp.blogspot.com/_tlkVtSRXuuw/Sm1sTYTfWtI/AAAAAAAAABQ/478euIArl8o/s320/picture-733103.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5363061811465640658" /></a></p>Today my baby turned 6!<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-3124787170422320240?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com1tag:blogger.com,1999:blog-1367744521396057585.post-63310463688272509202009-07-21T20:11:00.001+01:002009-07-21T20:11:13.344+01:00<p class="mobile-photo"><a href="http://1.bp.blogspot.com/_tlkVtSRXuuw/SmYS0aInlNI/AAAAAAAAABI/MueOR1Q56a4/s1600-h/picture-773345.jpg"><img src="http://1.bp.blogspot.com/_tlkVtSRXuuw/SmYS0aInlNI/AAAAAAAAABI/MueOR1Q56a4/s320/picture-773345.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5360993098009122002" /></a></p>First attempt at blogging by phone!<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-6331046368827250920?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-57460228799761713162009-07-21T15:04:00.002+01:002009-07-21T15:19:03.688+01:00I was thinking yesterday that I'd not blogged for a few days then thought back to how long ago I started this and why I carried on. I find it really useful to look back on things and see how I've moved on, can see the days when things were bad and realise that apart from money being incredibly tight we're doing well now on the whole.<br /><br />I started my blog as somewhere for me to let off steam, my feelings about big things as well as day to day stuff. It's evolved to be somewhere I can keep a track of details about things as well and share day to day stuff with people I know and probably others that I don't. <br /><br />So, fellow bloggers - why do you blog?<br /><br />Today E has gone to my parents house with several bags and suitcases, 17 year old girls don't travel light, and after tea they're all setting off to deepest Crawley to stay with my sister for a couple of weeks. It's my lovely niece's Christening on Sunday so E is going so that at least one of us is there for them. We'd have loved to go too but it's S's birthday next Monday and we just can't afford it with us going camping next month.<br /><br />This morning I nipped into town and bought the Christening present, a silver necklace with two stars and a chip of diamond. I can't find the same one online but it's called D is for Diamonds at:<br /><br /><a href="http://www.diamondkids.co.uk/">http://www.diamondkids.co.uk/</a><br /><br />That's was quickly wrapped before being added to one of E's many bags! So now there's just me and S at home until J gets in from work. R is at her other grandparents until tomorrow then it's just filling each day until next Monday. Wish it wasn't raining! Maybe the sunshine is saving itself until camping next month.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-5746022879976171316?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-7950190061308052272009-07-16T15:23:00.003+01:002009-07-16T15:58:49.105+01:00Today R and S finished school for the summer and E finishes tomorrow! Good and not so good, good that I don't have to drag myself out of bed each weekday, not a morning person me, but not so good is keeping them entertained for the next 6 weeks!!<br /><br />Tomorrow we're off into town to help make cake decorations at the drop in centre then on Saturday it's the drop in centre party where different people are taking cakes etc in and we're making it into a big display to make an allotment. I've got the job of making scarecrows, chocolate finger biscuits topped with a chocolate covered marshmallow top hat. Forgot the cocktails sticks that I'll need so it'll be a quick nip to a shop to find some. Sunday S has two different parties, that reminds me must nip off right now and text the mother for one of the boys to let her know he's going! <br /><br />Ok, did that. Been such a hectic week I forgot all about letting her know he was going. Got the presents for both parties earlier. A Home Bargains shop has just opened in town and it's got some really good stuff in that's decent but cheap. I hate the sort of bargain shop that sells stuff that looks good but turns out to be completely useless and not even worth 50p.<br /><br />On Monday I set off to Manchester with R shortly after 8am, we were due there at 10am so I thought we'd have plenty of time. I was wrong! Traffic queue started as the M61 joined the M60 and we stopped and started almost all the way to the hospital. Arrived just after 10am to find that the website is definately out of date - it said parking for 24 hours £5, it was actually £10! Found our way to the ward - letter says something like Elective Paed Ward or something, they call it the Short Stay Ward - Ward 76. The building is fabulous, really open and light. You just have to ignore the boarded up building site outside the door and down one side where they are still putting up new buildings. R was pretty relaxed, we saw one of the ENT docs who was happy for her to have a pre med and then saw the Aneasthatist who prescribed her some<br />Midazolam syrup.<br /><br />Then a while later her consultant came into the room to see another patient and was about to leave when he spotted R and said loudly "Ahh, R, I nearly didn't recognise you. R is an old friend of mine" to the other doc. She was so pleased, she thinks he's wonderful and to be honest we all love him. When you have a doc turning up at the hospital in the middle of the night very obviously having dashed in after being woken up to perform an emergency operation you see them in a different light. He's been her consultant since she was 3 days old and he's someone we trust 100% with her care.<br /><br />R was so relaxed after the pre med, every time someone spoke she either giggled or slouched down the bed with a silly grin on her face, she even laid there grinning and chuckling when they put the cannula in her arm! Unfortunately, after surgery she was having some quite spectacular muscle jerks/spasms which looked like she might have a seizure (not been so worried in a long time) so I think they'll be looking at something different next time.<br /><br />Anyway, we saw the consultant afterwards and he said that her vocal cords and upper windpipe were looking really good and only needed a small stretch, he was really happy with how that was going. The webbing had only grown slightly and after years of it keep growing back no wonder he was happy about that.<br /><br />Not so good news was the fact that her aberrant subclavian artery on the right hand side is causing problems with her windpipe again. When she was about 3 she had an MRI scan which showed this after they could see something pushing into her windpipe. At that time cardiology spoke to use and her consultant and decided that they'd wait and see if it moved away into the correct position and if it didn't they'd look at moving it and attaching it to her collarbone. It did seem to improve but now it's back. The part of her windpipe where the artery is putting the pressure on is now half moon shaped and compressed. <br /><br />ENT docs weren't sure if the cardiologist was calling in on her on Tuesday morning or if we would be sent an appointment. ENT doc on duty tried to contact them but gave up and sent us home about 11am in the end. So now we're waiting for appointments for ENT follow up and cardiology. <br /><br />I think next time we go we'll look at going by train! On the way home I ended up driving through a red light, I was so busy trying to read roadsigns and work out which of the 3 lanes went where I missed the lights changing and spotted the red too late to stop!!<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-795019006130805227?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com1tag:blogger.com,1999:blog-1367744521396057585.post-20879758041459257632009-07-11T17:19:00.004+01:002009-07-11T17:39:56.727+01:00Oh dear, it's been a while! Not helped by our pc giving up the ghost, E dropping her laptop and breaking that and the shitty back up laptop J rescued from the bin at a previous job deciding it didn't want to use the internet! We do now have Dad's pc plugged in here though, and his monitor as it looks like the problems with our pc were too much for ours and it gave up too. Handy having my lovely new Blackberry but as I can touch type at about 100 words per minute on a keyboard I find it hard going using a phone on the internet. Very useful to keep in touch with friends though.<br /><br />Cream teas - today was the summer fair at R's school and the Family and Friends (PTA) were doing the cream teas so as secretary I went in with R &amp; S to help out. 3 hours on my feet and they're sore and I'm tired but it was nice. Just no one offer me a cream tea in the next few days!<br /><br />On Wednesday I got 2 letters about R, both sent from the same hospital, one in each envelope. The first one said she's being admitted on Monday so phone and tell them if we are going and the second to say we had to attend the pre admission clinic on Friday or they won't admit her! Rang the pre admission clinic to say do we really have to attend the clinic as it's a 3 hour round trip to Manchester and we really don't need to go through the pre admission stuff after 15 years of operations and appointments. Luckily the bloke agreed and so we didn't have to get down to Manchester for 9.30 yesterday after all, phew. Rang the other number to confirm we're going so at 8am on Monday that's me and R off to find the new Children's Hospital. Last time I went to a hospital in the same area it was about 10 years ago and we got hopelessly lost.<br /><br />R hasn't had surgery on her windpipe for 3 years now and then they used an experimental technique on her laryngeal web. They apply a drug used in chemotherapy to her trachea where the web is after stretching and leave it for a few seconds. It stops cell division and helps to prevent the webbing growing back as fast. Going 3 years instead of 2 hopefully means it helped. She should have had a scope after a year but when she went in they told her she could walk to the operating theatre instead of going on the trolley which meant when she started to panic when almost there she ran behind a door and screamed and refused to move any further. After getting her back on her feet and back to the ward she cried for a couple of hours and we ended up coming home having had nothing done.<br /><br />We've talked a lot with her about how this is to improve her breathing and how breathing is very important and she seems calm about it at the moment. She understands that she gets out of breath easily and that her voice is husky and quieter again and that she needs to have this surgery to help with both of those things. She wants to go on the trolley and I have talked to her about sometimes people can be given medicine before an operation to help make them a bit sleepy and calmer. She wants the medicine so I've said we'll talk to the docs when we get there and ask about it but I can't promise they'll give it to her. Hopefully when they see in her notes how she reacted last time they'll give her something! <br /><br />Everything else is plodding along mostly, will maybe blog about other happenings this week if I get time tomorrow. J and S are off rallying, well J is marshalling and S is going along to watch the cars. I was going too but with an early start and drive first thing Monday morning I didn't fancy having to be ready to be picked up at 6.30am tomorrow! (NOT and early bird me!)<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-2087975804145925763?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com2tag:blogger.com,1999:blog-1367744521396057585.post-19134435864316773792009-06-17T12:17:00.002+01:002009-06-17T12:41:22.536+01:00Not blogged for a while, been busy getting life back to 'normal' - kids at school and J working again.<br /><br />I've been about to post several times but each time I look in I see the comment from my last post (thanks Tx) and it just made me keep thinking about how things are going and making me think - too much thinking isn't good.<br /><br />So - how is this person doing? I'm not too sure. In the past few weeks I've lost just over a stone in weight, that still leaves me at over 17 stone so I'm hardly going to waste away to nothing. I am eating properly again now but making sure I'm eating better than I used to. Got my bike sorted out last night, tyres all pumped up, bell attached and front light, so that I can start going out on that - when I've remembered how to work gears and can ride in a straight line safely again, not ridden a bike for about 18 years. Of course, I did that and today it's raining hard and is likely to all day so I'm sat here instead.<br /><br />I've got an almost constant headache, feel sick and tired and fed up and upset and every emotion I can think of rotates through me every day. This week I feel calmer than I have, IBS is settled down so I'm not having to dash to the loo several times each morning.<br /><br />Lots of things still going around in my head. Marriage still feel shakey but it's a work in progress. I think anyone who thinks you don't need to put an effort into a marriage is destined for divorce quite quickly. Coming to terms with things having got so close to ending, happy that we're still together, that we both want to be together but still finding our feet I suppose with J's provisional diagnosis etc. Upset that things happened, fed up that Income Support hasn't been sorted after nearly 2 weeks and we can't sort out housing benefit and council tax until that's done so all the while paper debts spiral more and more.<br /><br />I know it's going to be difficult for at least a few months, both of us coming to terms with the diagnosis, it helps in a lot of ways because at least now J can start to understand that he has a mental illness. He's already noticing the mood changes and can spot sometimes why he gets panicky feelings, usually if he's home alone but no every time. He's got to find ways of coping with the strong emotions that suddenly wash over him.<br /><br />Still no appointment for the mental health team, I must have been having a bad day to believe he would actually get a real appointment to see a psychiatrist shortly after being discharged from hosptial and the crisis team. I'm still trying hard to take a step back and not do things for him, he'd happily let me but he's got to deal with stuff and I want to be a WIFE not a carer. <br /><br />Had a really awful fed up feeling for a few days, kids taking the p*** and treating the house like a hotel - I hated that phrase when I was a kid but it really sums up E at the moment. I wouldn't have thought it possible for one person to leave a trail of dropped bags, clothes etc in nearly every room in the house in 5 minutes. She comes in, drops stuff, has a shower, goes out, and leaves more mess than the other 2 do all evening. Not sure where this selfish monster came from, it's even too much effort for her to make me a cup of tea in the evenings if she's on her laptop. I think I may have to turn into an angry monster of a mother and confiscate the laptop again and maybe even other things if this carries on.<br /><br />Ok, I've moaned and waffled long enough, woe is me today, I want to cry now I've got things out but I can't. Normal me will return shortly.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-1913443586431677379?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com2tag:blogger.com,1999:blog-1367744521396057585.post-90320454350909456842009-06-05T19:02:00.002+01:002009-06-05T19:20:22.595+01:00I wasn't sure what to put as a title for this, so much has been happening and with J at home I've not really had any time to sit and blog - as I speak R and S are busy throwing things at each other and alternately laughing with each other and fighting and yelling! Everyday life isn't boring. With a 5 year old now shouting in my ear that I need to put his sock on like daddy does - pushed between his big toe and the next one (?!) and a hormonal 15 year old on the sofa watching repeats on tv and screeching.<br /><br />This morning I was on duty as volunteer at the local family drop in centre because the manager and other volunteers were having a fund raising coffee morning at the town hall. That meant I was there at 9.15 to open up and as is usual for when a coffee morning is on I was alone for 2 hours with my thoughts. After that a friend came in then J and then a lady with a baby who amused us all with his smiles and eating his sock.<br /><br />In those two hours I had time to reflect on where my life is now after the past month of confusion and what I do with my time. I think if I had to list all the everyday stuff I do I'd wear myself out.<br /><br />From time to time I go to a meeting with local professionals dealing with kids with special needs. Education, health etc represented and little old me. With a meeting coming up next week it got me to thinking just how little these people who are paid to work with our kids know about our lives and how many of them realise what an impact it has on family life. I am considering sitting down and typing out exactly what they need to know about parents to pass on to other professionals when they meet a child and parent(s). I have seen a lot of the other side of how they are struggling to do their jobs as well, how so much local restructuring going on some of them have been moved to a new office in a different area of the county, taken on a new workload onto to be moved back again with a different title, different office, different manager but doing the same job! Budgets to consider, paperwork by the suitcase load and still trying to do the best they can for their patients, clients, service users or whatever some numpty in an office at the time decides they should be refer to us and our children.<br /><br />Hopefully I've helped them realise the impact they have on our lives, things I have been able to pass on about what parents really think and how confusing different systems and how different departments work and how so many parents don't know who to turn to when they need help with something.<br /><br />I've had some comments from local parents, something that came up very recently was that after their child was diagnosed they were basically sent away with a list of local support groups and charities to contact for help and they just felt totally lost. I remember that feeling well. I also remember how after the initial diagnosis for R I was so happy and relieved to know what was wrong with her but that was followed by falling into a black hole when the realisation that she had a lifelong condition(s) that would mean her life was going to be totally different to what we expected.<br /><br />With all that to deal with the thought of ringing up some stranger at a local support group was too much to deal with. I couldn't do it, if I tried to talk to even people I knew for long about R I was on the verge of tears often. I'm going to suggest that maybe they could consider asking parents if they could pass their details on to the relevant charity or group for them to contact them directly. Even an card sent in the post, personally inviting them to an event or to drop in for a coffee rather than an impersonal printed out list would be better surely? Sometimes the little things can make a difference.<br /><br />J is away for the weekend which is why I now have time to sit and type. Nice to have a bit of a break with him not being at work at the moment but missing him already and he's only been gone 2 hours! Some good news, if the GP will sign him fit to work in about 10 days there's could well be some non driving work available at the depot for him! After having spent nearly and hour on the phone earlier sorting out a claim for Income Support and Housing and Council Tax benefit it'll be nice if he can get back to work. Not sure how they expect anyone to manage without extra help on SSP (sick pay) of £70 a week!<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-9032045435090945684?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com1tag:blogger.com,1999:blog-1367744521396057585.post-23895928647266991152009-05-22T20:36:00.002+01:002009-05-22T20:46:03.644+01:00A busy day today. Overslept after coughing so much I was almost ill at 5.30 and got up to watch tv, decided to go back to bed an hour later then suddenly woke at 8.25. Normally I could have still managed to get S to school on time but it was pirate day and we had his sword and telescope to finish! Not bad though, he was in class about 9.03!<br /><br />J at docs at 11.30am - a glimmer of hope for his job and ability to drive! Doc doesn't consider him to be suffering from a mental illness or at least a depressive mental illness, he says it looks like he is heading towards a formal diagnosis of Borderline Personality Disorder and that doesn't prevent him from driving as long as his moods are under control which they are now. We took the details we'd printed off the dvla site and J doesn't fit neatly into any slot so the doc suggested J phone the dvla himself and ask them. Sick note for 4 weeks to give him time to stay settled on meds and adjust if needed. Also gives him time to sort out his licence.<br /><br />J phoned dvla who put him through to their medical dept who listened and they are sending him a form to fill in and will contact him doc for details too. This means they pay for any costs of the doc and J doesn't have to surrender his licence unless they decide to when they have full info. There is still a chance they will ask him to surrender it but also a bigger chance than we thought of that not having to happen if they are happy for the doc to decide he's stable and ok to drive.<br /><br />R had her first appointment with the ortho doc today. Her spine seemed to start to curve a couple of months ago and physio was great and referred her quickly. He said there is a curve near the top and one at the bottom but they looked fairly equal in the way they were curving. Sent her for xray then back for a look at them and another chat. There is a curve of about 24 degrees on both curves. Will see physio for exercise and discuss seating etc but for now he won't see her for 12 months unless she has any pain or it looks to get worse. He said at her age it was unlikely to progress much but her dad had it corrected at 16 and I know of others who have had it at around her age and needed surgery so I know it's a possibility. If we can avoid that though I'll be over the moon.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-2389592864726699115?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com1tag:blogger.com,1999:blog-1367744521396057585.post-4634221312729789402009-05-21T17:27:00.002+01:002009-05-21T18:02:28.257+01:00Well, after much ranting a while ago I ended up with little time to get online and not really any time to blog. <br /><br />So, a quick update - J is home, he came home for 2 hours on Monday then back to the hospital, they like to ease people back home as soon as they can. Stayed in Tuesday, had a bad day. Wednesday came home for lunch then back at 2pm. Thursday came home for an overnight stay! Went back Friday morning and was discharged! On anti psychotic drugs (I'm sure that spelling looks wrong but can't be arsed to go look it up) and reduced anti depressants. He's now on a much lower dose with a view to come off them and try a different one if needed. <br /><br />He's so much better, apart from a bit of forgetfulness due to the drugs - I keep having to tell him things twice which is not him usually at all. To be honest, he's probably better now anxiety wise than he's been in ages.<br /><br />Bad news - docs tomorrow to review meds and chase up long term mental health team and to see what section of mental illness he belongs in according to the DVLA. If it's the one I think it is he'll lose his driving licence for 6 months - as a bus driver that means no work! Saw his boss earlier, he was the one that told us where to find the medical list from the DVLA, and he has said that if he does have to stop working he'll have him back as soon as he is able to drive again. I asked if he might have something else he can do when he's fit to work but not drive and that's a possiblity, even if it's cleaning and refuelling part time. At least while he's on the meds he can be signed off sick by the docs, the problem will be if he's signed fit to work but can't work if he hasn't got a licence.<br /><br />J is ok about the news, obviously not good news but he's coping with it. <br /><br />Yesterday was de.... damn, got interrupted and forgot now what I was going to put!<br /><br />Anyway, partly remembered now. J decided yesterday he was ready to have his mobile phone back and could deal with any phone calls or text from <span style="font-style: italic;">the slapper</span>. He turned it on today but as yet has had no calls so maybe she's given up on him. Not had the pleasure of bumping into her yet in town since the sponsored walk when she was in town drunk and shouted abuse at me across the street. He knows he was stupid, led her on mostly but letting her sit with him and natter endlessly while he occassionally nodded his head in the right place. Seems during one of these times she was making plans to get a flat, move him in and get married!! Just what I need, someone who lives in cloud cuckoo land harassing us. All the while she was trying to phone and text during his time in hospital she was out at night picking up men and bragging about it to anyone in earshot at the bus station. What makes some girls behave like that? To just follow around bus drivers because they think they're rich - with 3 kids I don't think earning £250 a week is rich! Maybe I'll leave more about her for another time.<br /><br />Now I remembered what I was going to put but now I've started to type I forget again! Ahh yes, yesterday was debt sorting day. J has a couple of catalogue debts and a credit card debt that he's not been dealing with, every time they phoned he'd agree to pay some stupid amount just to shut them up but ended up promising in total more than he had coming in. I said that I would take over dealing with them for now, make arrangements for a short term reduction of payments until he can work, set up payments on his bank account etc then pass things back to him. I typed up letters which we both then signed and posted yesterday. The catalogue people have been great. I fully explained the situation and once they get the signed letters they'll speak to me about payments etc. Credit card company was another matter and if we get any more phone calls asking to speak to him after promising 5 TIMES that they won't ring and me having to explain everything each time, they'll be getting reported to whoever I need to report them too. Last woman I ended up shouting at to shut up and listen because she was talking over me and I was getting upset, hope her ears are still ringing. Put in a complaint to the company anyway about the phone calls and the one yesterday who refused to put me on to a manager/supervisor.<br /><br /><span style="font-weight: bold;">OUR MARRIAGE!</span><br /><br />Hours and hours of talking over the past couple of weeks led us to make the decision that we've got into a rut and as a couple were spending time in the same house doing different things in the same room but rarely doing things together. J admitted he was very confused at first and did say he wasn't sure if he loved me or if I loved him but with so many talks, tears and hugs we're moving forward together properly. <br /><br />One big decider was a doctor at the hospital seeing us both and me asking, after he kept referring to <span style="font-style: italic;">this type of depression</span>, what he actually thought J's diagnosis could be in the long term. He said <span style="font-weight: bold;">personality disorder and depression.</span><br /><br />After a quick google of personality disorders the description of Borderline Personality Disorder leapt off the page and gave me goose bumps - it could have been written about him - apart from the bit about gender confusion! I printed it off and took it into the hospital and it was a revelation - J was stunned and could only say "it's like someone has met me and written about me". Another doctor he saw when he was first admitted referred to him having a mood disorder which often occurs with BPD.<br /><br />If he does get that as a long term diagnosis it'll have implications - it's a serious condition sort of slotted between Bi Polar Disorder (manic depression) and schizophrenia. Some studies are starting to consider it as on the Bi Polar Spectrum. Here ends the lesson on BPD - useful links I've found so far if anyone is interested are:<br /><br />http://www.nimh.nih.gov/health/publications/borderline-personality-disorder-fact-sheet/index.shtml<br /><br />and<br /><br />http://www.nimh.nih.gov/health/publications/borderline-personality-disorder-fact-sheet/index.shtml<br /><br />So, as you can see it's been a hugely busy couple of weeks. Hopefully we'll get some good news tomorrow.<br /><br />I'm busy trying hard to be there for J but not take over things. After spending the days before he went into hospital worrying myself to the point of making myself, literally worried sick, it's hard to do but I'm getting there.<br /><br />If you got this far - well done and sorry for the really long post.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-463422131272978940?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com5tag:blogger.com,1999:blog-1367744521396057585.post-43324071546882716122009-05-07T22:23:00.002+01:002009-05-07T22:31:01.479+01:00Where to start?<br /><br />Today has been the day from hell. J has been up and down and acting strangely and then I was waiting for his bus to come in and heard some girls nearby mention his name, then they acted strangely when I walked off with him. Then he gets a text saying "is that your wife why didn't you tell me about her" and more strange behavior.<br /><br />Long story short, I got his phone and gave him mine while he was still working and sent texts back to the number and it seems she thinks he's in love with her and she's expecting him to move into a flat with her any day! He later admitted he'd seen her twice but nothing further and she's a know fantasist. I found that bit out from someone else so I know she's really expecting him to marry her within the week and live happily ever after. <br /><br />More strange behavior and he's acting like it's an everyday thing to be having some girl following him around and making plans. After a huge row he called his mate to see if he could stay there and then everything came out - how he's desperatly mixed up, doesn't know if he loves me but thinks he probably does, how he desperately wants to get a knife from the kitchen and slash himself or take the car and drive it into a brick wall.<br /><br />I called the doc, doc called back, went to see the doc, she called the mental health crisis team and they were here this evening. They decided he should be admitted to hospital for his own safety so here I am with my head spinning having waved him off from our local hospital in an ambulance. <br /><br />How do I feel? Relieved he's finally getting treatment, upset because he's ill, glad he's safe, upset at his behavior but also knowing he doesn't seem to have been aware of what he was doing or why. It's almost as if he's been starting to set up a double life but didn't see it as odd.<br /><br />Tears from us both, talking a fair bit, not sure what to put now, words there dancing around in my head mixing up my feelings. Tears are dry for now but I think before long I'll go sob myself to sleep then start afresh tomorrow. Important thing is to get J better first then see if we can repair our marriage afterwards.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-4332407154688271612?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com6tag:blogger.com,1999:blog-1367744521396057585.post-89557094555756353232009-05-06T10:56:00.002+01:002009-05-06T11:11:04.417+01:00I finally managed to get the link to my Just Giving page on here. This Saturday evening I'm doing the local Cancer Care Starwalk, 1000 women walking 9 miles! I did it last year and it's a great charity, helped my parents hugely. Please sponsor me if you can.<br /><br />I was thinking of doing 2 posts but then I thought I'd end up pushing the bit about the Star Walk to the bottom of the page as this is going to be a long outpouring, got so much wanting to burst out and nowhere to let it out.<br /><br />Hubby, J, was diagnosed last summer with depression. Self harming and feelings of worthlessness, helped a lot with anti depressants and 'short term talking therapy'. That was great, but it's limited to 8 sessions and he was just making progress when he had the 8. With our wonderful health care system he was then put on the long term therapy waiting list, can't go on the list until after the short term therapy and the list is about 9 BLOODY MONTHS LONG! Would the NHS take the cast off a broken leg when it started to heal and say "sorry, you still need treatment but you'll have to wait???<br /><br />After progressing slowly he then started to go downhill slowly, meds upped twice, most recently about 3 weeks ago and GP said then he can't up them further, that can only be done by mental health team - the ones at the end of the 9 month wait! The past few days have been hell. He seems to suddenly switch off, all facial animation goes and so does all emotion except for a deep despair. He says he has no fear, no worries for his safety and just gets and overwhelming feeling of wanting to escape. Sunday night he took off, told me he was off to fix his mates pc but certain things didn't add up to I told him I didn't think he'd been there so where was he for 2 hours that evening? 2 hours, he sat in a car park crying and then driving around thinking several brick walls looked tempting to drive into. What the hell can you say to that?<br /><br />Came back with a scratched hand, told me at first it was from the pc fixing but then admitted he'd done it but unlike previous times he didn't care and it didn't bother him. His lower arms are a mess, gouged himself with his nails reguarly and has tramlines of red scars marking them now. <br /><br />Last night he wanted to go for a drive but I wouldn't let him, suggested he go for a walk instead so he did. Told him to ring me if he'd be more than an hour. An hour passed, no call and he wasn't answering his mobile. I was sat here worried sick, where was he and what was he doing? Finally got through to him half an hour later and he was heading back this way through town so I went and picked him up. It was very windy and raining on and off so with the traffic he probably couldn't hear me phoning but not sure if he could or not. My mind was running wild last night, you do when you're sat at home worrying about someone not knowing where they are. Who do I ring if he doesn't come home, how long would I wait? Trying to keep a calm face on because E was upstairs doing her homework and the other 2 were asleep.<br /><br />Why is it so damn hard to get help with mental health problems? Do I have to wait until he is on the verge of killing himself before anyone will do anything with any urgency? Why can I get no help for him? Rang the local MIND and their counselling service is full, no surprises there really. Where do I turn next? I have visions of me having to call the docs for help one evening because he's given up trying. Why when someone needs to feel the professionals care so desperately do they say "sorry, you'll have to wait"? I love my husband, I want him back to being himself, I want someone to take him seriuosly before it's too late.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-8955709455575635323?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com5tag:blogger.com,1999:blog-1367744521396057585.post-44948812565531388482009-04-22T15:31:00.002+01:002009-04-22T15:37:25.951+01:00Yesterday I went somewhere very special. Yesterday I joined lots of other people in saying a last goodbye to a special little girl who died quietly a couple of weeks ago. I witnessed the love of many people, the pain of many people and the pain of a mother so severe it was visible. I thought the death of a child must be the most awful pain I could imagine, I now think saying the final goodbye must be worse. <br /><br />Today I am still so very sad and feeling so much for all the mums I know who have lost a child recently or further ago. Today I know how lucky I am to have 3 kids with me, today I hug them closer than normal and tomorrow I hope I remember that.<br /><br />The music was a mix of old and new, all with words that were so fitting and so right but so heartbreaking at at the same time. Someone read Heaven's Very Special Child, I hadn't heard it before so I went and found it on the web and here it it is for anyone who doesn't know it.<br /><br /><span style="font-weight: bold;">Heaven's Very Special Child<br /><br /></span><span style="font-size: 14pt;">A meeting was held quite far from earth<br />"It's time again for another birth,<br />Said the Angels to the Lord above,<br />"This special child will need much love."<br /><br />"Her progress may seem very slow<br />Accomplishments she may not show<br />And she'll require extra care<br />From the folks she will meet down there.<br /><br />She may not run or laugh or play<br />Her thoughts may seem quite far away<br />In many ways she won't adapt<br />And she will be known as handicapped.<br /><br />So let's be careful where she is sent<br />We want her life to be content<br />Please Lord, find the parents who<br />Will do a special job for You.<br /><br />They will not realize right away<br />The leading role they're asked to play<br />But with this child sent from above<br />Comes stronger faith and richer love<br /><br />And soon they'll know the privilege given<br />In caring for this gift from Heaven<br />Their precious charge, so meek and mild,<br />Is Heaven's very special child."<br /><br />By Edna Massimilla<br /><span style="font-weight: bold;"></span><br /></span><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-4494881256553138848?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-10663119764602110712009-04-10T15:58:00.003+01:002009-04-10T17:39:09.950+01:00I always think Good Friday is an odd sort of Bank Holiday. The only one always on a Friday instead of a Monday, then there's a normal Saturday before Easter Day and another Bank Holiday on Monday. J is off work today, was yesterday too, works tomorrow and off Sunday before working overtime on Monday. Might have to take a trip with him on the big bus he's driving then, into the heart of the Lakes.<br /><br />A mixed week this week. Friends over on Monday, firstly one who is an English teacher and who was giving some advice to E on maybe doing an English degree after her A levels then going into teacher, she's decided Law is definatly boring and doesn't want to do it any more.<br /><br />Then some Special Kids friends in the afternoon! R was fussing all day about what time they'd get here, where B's wheelchair could go if they watched tv, where would M go in his wheelchair and what else could we do! Next time anyone is coming I'm not telling her!! A short walk in the brisk wind, a few minutes at the park them back again for a while before loading up the bus and going again. I really must get my photos uploaded to the interwebby to share.<br /><br />Wednesday we trundled off to Ducky's Farm, myself, R and S. E declared herself too old to go with us and stayed at a friends for the day instead. A fab day catching up with friends and tiring out the kids.<br /><br />Some sad news this week though, a lovely little girl who had the most amazing smile sadly didn't wake the other morning and is now with the angels RIP T xxx<br /><br /><br /><br /><a href="http://www.justgiving.com/carlarichardson" target="_blank">http://www.justgiving.com/carlarichardson</a><div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-1066311976460211071?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com1tag:blogger.com,1999:blog-1367744521396057585.post-80307919045298094282009-04-06T13:34:00.003+01:002009-04-06T13:37:44.537+01:00I'm co owner of a local Freecycle group and help on a couple of others. As well as approving messages I also deal with pending members and we often have a chuckle at what some people put, they obviously don't read back what they've written. One application lately stated:<br /><br />"I am interested in recycling and i have 4 horses with my husband" Hmm, interesting lady!<br /><br />A post I considered editing then approved as it was because I was sure it would give members a chuckle too was:<br /><br />"wanted <span class="il">rabbit</span> hutch for my little girl" Hope they got one big enough for the girl to move around in!<br /><br />:D<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-8030791904529809428?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-78619233456639736012009-04-02T13:57:00.006+01:002009-04-02T14:20:14.625+01:00It's a lovely sunny day today yet strangely it feels colder than it did yesterday when it was cloudy. I should be out in the garden doing jobs that need sorting. I'll be heading out later though to do some cutting down of bits that need taming before the summer. The sheds and the fences need treating, we bought the stuff and borrowed the sprayer from my parents last autumn but never had a day when we both had time to do it and it wasn't wet or windy! The wind seems to blow here more than average, probably because we are quite high up above the town, more than you realise until you walk towards town and look down on it.<br /><br />I love pottering around in the garden, seeing things grow and just relaxing with a coffee and a book to read. I've got a small veggie patch, needs weeding and digging over before I can plant anything there this year, I must get that job done too or it'll be too late to dig in some paper at the bottom of the bean trenches.<br /><br />On the windowledge in the kitchen the seeds are planted and starting to sprout, all except the sweetcorn that I forgot about and left the packet in the shed over winter, I don't think they're going to grow.<br /><br />*goes to take photos*<br /><br /><span style="text-decoration: underline;"><a href="http://s6.photobucket.com/albums/y214/CarlaBump/Misc/?action=view&amp;current=March09011.jpg" target="_blank"><img src="http://i6.photobucket.com/albums/y214/CarlaBump/Misc/March09011.jpg" alt="Photobucket" border="0" /></a></span><br /><br /><br />Now I can't remember how I made a photo smaller last time I posted one!<br /><br />That's my kitchen window sill, wonderful south facing space that fits plenty of plants and seedlings.<br /><br />Right, the sun is out and I'm off for the garden shortly.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-7861923345663973601?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-71134463802636088992009-03-30T10:03:00.004+01:002009-03-30T10:27:35.335+01:00Organised is not a word you'll hear using about me, unless they are drunk, don't know me or just plain mad. My house is untidy, not dirty because I do clean - when I have to - things get left until the last minute and it all needs decorating.<br /><br />A bit over 2 years ago we had workmen in for about a month while things were done as part of the Council's 'Decent Homes' thingamibob. It meant new electrics, new kitchen, new bathroom, etc etc. The new heating system was done badly, new boiler and hot water tank taken out but they did put a radiator in it's place so in the winter I do have a lovely warm airing cupboard. They didn't replace any of the pipework going around the house yet put new radiators in each room. The pipes protested loudly and more than one burst on switching on, made for an interesting evening of electrics throwing a wobbly and the fuse box cutting out several times while the men tried to fix things by torchlight.<br /><br />Anyway, the kitchen was tiled and the only room that they decorated - needs redoing because they stuck magnolia paint on the untiled bits and only used a cheap matt emulsion that of course can't be washed down. It does just need a coat of paint though, unlike the rest of the house. All the rooms had new radiators, all the radiators are smaller than the old ones so every room in the house, apart from the kitchen, needs decorating. When we moved in 4 years ago we knew the works would be done in the near future so had only slapped on a coat of paint in each room. Now things are really looking tatty.<br /><br />I can decorate the stairs and landing now that the huge patch of plaster that was falling off was replaced and the pointing to the outside of the house has been redone, only waited 16 months for that to be done. Worryingly though, the ceiling at the foot of the stairs is now cracking and looking dodgy so do I get wallpaper and decorate the stairwell or wait god knows how long until it's done? Of course it'll be done quicker when I get around to phoning the council and reporting it - and the hole in S's bedroom where the plaster has fallen off and the strange disintergration of the wall around the window in the girls room.<br /><br />We bought the wallpaper to decorate the living room with the grant the council gave us to decorate - every room needs redoing because of the electric work and new radiators and they gave us £100!! Should we bow down and be grateful!? It was just enough to buy paper for the large living room we have, first will have to remove the woodchip circa 1960 and it's layers of paint and hope that not too much plaster falls off or walls fall down. At least the ceiling is a blank canvas, that had to be redone before the other works were done because it was in danger of falling down.<br /><br />We bought the paper a few weeks after the work was finished, unfortunatly the following Monday morning I slipped on the stairs and slid down, catching one leg under me. I landed up the bottom pretty much upright still but knew something wasn't right with my right leg - I confirmed this by looking down and seeing my heel where my toes should have been. I don't do things by halves, I'd broken 3 bones and totally dislocated my ankle - blue light ambulance trip to Lancaster and surgery 2 weeks later, I still have a metal plate and 6 long screws holding it all together. Anyway, that meant the decorating of the living room was put off, the paper etc are still sat in the walk in cupboard under the stairs and bits of the living room have bare patches where the woodchip has come off. It's a big job that I keep putting off but we really do need to get it done this year.<br /><br />I used to write lists for everything - lists for daily stuff, lists for weekly stuff and lists for big stuff that needed doing around the house. Not sure when I stopped doing it but I think I need to start again and try to get myself sorted. I realised the other day I spent on average 5 hours a day on the pc doing Freecycle stuff alone, being co owner of the local group and back up mod on 2 others I've been busy. I think I need to start mapping out my day and appoint certain times to turn on the pc, do what I need to do and not get distracted by Scrabble on Facebook!<br /><br />I think I'm going to dig out my last list book and start doing that again, I might one day be more oganised, I might - honest - I might.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-7113446380263608899?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com2tag:blogger.com,1999:blog-1367744521396057585.post-63819303141236569292009-03-26T17:41:00.002Z2009-03-26T17:48:19.952ZHad a busy week. J finally got his 'snip' on Monday so he's been home, only in bed for a day and dressed yesterday and up and about pretty much normally, just got to persuade him to be unmanly and shower DAILY! At least with stitches in he's not spending half his days with his hands in his pants scratching around like only men can. <br /><br />E wasn't speaking to me yesterday, her fault for acting like a spoilt brat of a 17 year old. I know I get too soft at times with the kids, it does mean when I put my foot down hard they get a shock - never mine, she'll get over it. For more than a week I said I wanted their bedroom sorted out and hoovered, R went up twice and put her clothes away but with all E's books etc all over the floor she couldn't do much until E had been in and sorted her stuff. Yesterday E came in from school late after staying to do some German work. She stomped in the door saying "my life would be so much easier if Germans would just speak English all the time"! Well, I suppose that's teenage logic. Then she said was it ok if she went out for someone's birthday last night, I said "no" because she had homework, the bedroom was a bombsite and it was a weeknight, but mostly the bedroom and me being fed up of her going around the house like a human snail - trail of crap wherever she goes. <br /><br />An hour or so later she came down and said the room was spotless, could she go out now. She just didn't get that when I said "no" it couldn't be changed to a "yes" because she belatedly did what she was supposed to do in order to do what she wanted to. Lots of stomping round, one word answers and generally being ignored most of the evening by her. This morning the kitchen table is covered in her files and school work, a wet towel and my hairdryer from her having been in there until late last night doing stuff. Wonder if she'd put things away if I let them on her bed? Funnily enough I think they;'d just end up on the floor. TEENAGERS with PMT!!!!<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-6381930314123656929?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com3tag:blogger.com,1999:blog-1367744521396057585.post-55331035243250604532009-03-17T20:07:00.003Z2009-03-17T20:16:07.947ZSitting here wanting to cry but not wanting to. Why does a not too bad appointment bring up all those horrible emotions from over the years again? R needs surgery again, in the next couple of months she's have a balloon dilatation of her trachea and vocal cords followed by an application of topical mitomycin. Lovely!<br /><br />I should be happy that it's 3 and a half years since they did it last, which is great because at one point she was needing things stretching once a year, but I'm sitting here feeling totally pissed off that she has to go through it all at all and I can't do anything to help. My Mum always used to say "things could be worse" which I used to bite my tongue to until they moved up here and Dad was ill and Mum started to realise it's more than physical work looking after someone who's not well. She brought up that saying then and I told her outright that it might help her deal with things but it didn't me, I was always fully aware things could be worse but saying that just made me think "yeah, but they could be a whole lot better too!" Yes, she could be far worse, she could have worse disabilities and affected worse with 22q11 but she could also have been born with full set of normal chromosomes!<br /><br />Rant over, I think! It's rare for me to have a "WHY HER" and "IT'S NOT FAIR" moment but here it is, mine for this year probably.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-5533103524325060453?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com1tag:blogger.com,1999:blog-1367744521396057585.post-64039213089573739422009-03-16T23:26:00.003Z2009-03-16T23:38:31.311ZTomorrow, Tuesday, is the day of R's annual ENT check up. So I'll be trotting off down the M6 to Manchester for an update and a chat with her lovely doc. I think they are going to need to have her in for a day and put the old scope down her windpipe to see how things are going. She was born with webbed vocal cords, it meant she had only about 30% of a normal windpipe so couldn't breathe properly. After surgery things were so bad she had to have emergency surgery in the middle of the night then a tracheostomy the next day, all that was in her first week of life. She had several surgeries in the first couple of years then finally she had the tube out at 2 and a half. They left the open stoma on her neck until she was about 8, doc called it an emergency entrance if she ever needed to be retubed. Thankfully she didn't but it did mean years of wiping snot from her neck every time she coughed. yuk.<br /><br />Forward a few years and she had rather experimental work done, after several admissions where they stretched her windpipe they stretched it to break the webbing that insisted on growing back and applied a drug usually used in chemotherapy. The idea is that it stops cells dividing and regrowing and as it was unwanted tissue on her vocal cords causing problems it may work. It seems to have too! That was 3 years or so now and I think we are now looking at possibly having it done again. They did say she'd probably need it doing as she got to adult size and she's nearly 15 now and growing well.<br /><br />I've noticed a definate hoarseness lately, she often sound like she's just getting her voice back after a cold and needs to clear her throat, she's also commented on getting out of breath easier. I've been ignoring it for a few weeks now because I knew we had this appointment coming up and we wouldn't have got in any sooner. Time to take my head out of that oh so lovely sand.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-6403921308957373942?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com1tag:blogger.com,1999:blog-1367744521396057585.post-77519003537857922662009-03-15T20:45:00.009Z2009-03-15T21:08:29.944ZDefinately spring like today, not hugely sunny but nice, bright and not too cold.<br /><br />Today we went to see C, my best friend and Godmother to S who was my next door neighbour also for a few years before we moved here. It was her birthday on Friday, same day as my E who turned 17 - no wonder I feel old some days! Today we took choccies and flowers and card to C and had a coffee or 2 and a natter, myself, J and S. We used to have a cat, Speedy, I say used to because she got old and had to be put to sleep about 18 months ago with a poorly liver. Wonder if I can get a photo to show up just here in the right place? Hmm, best go find a photo of the cat and upload it somewhere and link it like I know how to do but for some reason had a mental block when it came to putting things here!<br /><br /><a href="http://s6.photobucket.com/albums/y214/CarlaBump/Cross%20stitch/?action=view&amp;current=blackandwhitelion.jpg" target="_blank"><img src="http://i6.photobucket.com/albums/y214/CarlaBump/Cross%20stitch/blackandwhitelion.jpg" alt="Photobucket" border="0" /></a><br /><br />Finally I got the photo the right size!<br /><br />Because we had Speedy for so long we didn't think about taking S and his allergies to see C and then sit with her two cats until he started with a runny nose, runny eye and then swollen eye. So after leaving her house we had to go to the nearest chemist and buy a bottle of Piriton. Then around the town we used to live bumping into several old friends. A nice half an hour passed like that, S was happy enough after he'd had medicine too.<br /><br />We decided because it was such a nice afternoon, and the traffic so awful, we'd come home via Bowness and have chips for tea by the lake. We stopped off for tea and parked up near the lake and found a nice wall to sit and relax and watch the boats, and a surprising amount of tourists, going leisurely by. Wish I'd taken my camera out, I really must try to use it more so I can post more photos. 30 swans I counted at one point, all happily watching out for food and avoiding the gulls that kept dive bombing them when people tried to feed them.<br /><br />A nice drive home through the back road way, snowdrops just about finishing, daffodils starting to break out and lambs in the fields leaping around and at nearly 6pm - not dark! Definately the first signs of spring appearing here now.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-7751900353785792266?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-19751594488206929172009-03-10T18:12:00.002Z2009-03-10T18:16:02.873ZHmm, I narrowly avoided a red face earlier today.<br /><br />S was invited to a birthday party, invited by Kai in his class. Forgot to reply saying he was going and warning about his allergies but message sent via J yesterday and all ok.<br /><br />Forgot it was Tuesday today so I dashed off to the shops to buy something and a card earlier before picking up S from school. I found a boys card and a great toy motorbike and back to pick up S before dashing home, wrapping and writing and getting him ready to go to the party for 4pm. <br /><br />On the way back I was talking to S about the party saying I didn't know who Kai was, when he piped up "she's in my class". SHE?!??<br /><br />Oh well, good job there is a corner shop 30 seconds from our house, had to dash there and buy a girls card, a skipping rope and some choccies to wrap instead!<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-1975159448820692917?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com1tag:blogger.com,1999:blog-1367744521396057585.post-48320020433538293062009-03-06T18:03:00.002Z2009-03-06T18:16:23.102ZYAY It's Friday! Hmm, not sure why I tend to cheer about it being Friday, the only good thing is I get woken by the kids instead of my clock radio for 2 mornings in a row. J is off rally marshalling tomorrow and is being picked up at 5.15am, not much of a chance I'll be surfacing that early, sleeping is something I have a natural talent for at that time of day. As long as S doesn't hear Daddy about and decide he'll get up too in which case his radio will go and and the toy cars will be smashing into the wall behind my head! Nothing on tomorrow morning, YAY! Why am I doing that again? I will have a mountain of washing to sort and a king sized and a double bed to strip too. I think the last grains of my sanity just sneaked out under the door.<br /><br />Tomorrow pm I'm taking R to some thing by a charity about short breaks for disabled kids. Hmm, how long have they been going on about this? Not seen any changes at all, just seems to be endless meetings about "who we can meet the needs of kids in this area". I know it's definately been at least 2 years since the meetings and discussions started because I missed the first meeting I was going to go to by falling down the stairs and smashing my ankle to pieces. Oh well, here's hoping we get something out of it. It's not Social Services tomorrow, what a waste of space they are for us. R has had no input for years apart from one temp social worker more than 4 years ago who appeared for 3 months to clear the department's backlog of cases then buggered off again never to be seen again. Oh, and he very kindly let me know he'd closed her file just before he disappeared because I hadn't contacted him, hmm, I'd been waiting 3 months for him to get back to me! At that time they agreed Direct Payments for R, still waiting! Wonder if I should add up the hours per month they promised and invoice them for 4 years worth at once? <br /><br />I know R gets on ok, she's not got any major health problems at the moment but she does have learning problems, she does have a scarred and narrow windpipe and she does have some minor problems physical problems. The hardest part is that she's almost 15 and isn't able to do things by herself! Most kids are perfectly able to get a bus into town to see their mates etc. R needs to learn how to do each bit one bit at a time, people don't seem to get that she has a weird way of seeing things. Example - she can go down the same road for a year by car, on foot or whatever. She could pass a river, a chip shop and a certain car each day. If you took her down the opposite way and passed the car she would not have any idea what would come next or a lot of the time even realise she was going down the same road. She's getting better but it's hard to try to teach her things we take for granted that we notice and kids pick up by looking etc. You can think you cover everything then realise you've missed showing her something obvious. This is where we want some help which DP would have been great for. Someone to take R out to places and teach her how to get about alone. It's hard going when you've got a 5 year old in tow as well to try to have to point out things R hasn't noticed that everyone else has a hard time missing.<br /><br />J has taken S off to see the cars that are taking part in the rally tomorrow, should be interesting, if the traffic isn't bad they'll be ok, if it is they'll probably get there in time to see half a dozen cars then an hour and a half drive home again. Oh well, rather them than me and I'm sure S will be happy as long as he sees one.<br /><br />Hmm, teatime!<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-4832002043353829306?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-4224987618342393262009-03-05T12:18:00.004Z2009-03-05T12:36:39.045ZWhy are there so many words going around in my head but I can't get them out? For some reason I've always been a thinker, but what I think rarely comes out right so I seem to spend half my life saying the wrong thing or having one of my feet in my mouth at all times. I just can't get the right words out! When I use online forums I end up typing a reply that I post which says things but rarely do they say what I feel, perhaps I think too much and end up putting 'safe' posts only. Shyness? Self doubt? I dunno. There I go again, thinking. A few nights this week I've read stuff online that's sent me thinking for hours so I've ended up oversleeping because I am awake so long with a brain that just won't shut up. Now I want chocolate, I blame my hormones, I think it's the time of the month for chocolate, if my hormones were more regular I'd probably know for sure but I think it's a good enough reason to head to the shop once I've finished this post to buy some.<br /><br />Yesterday I put in my application for this year's CancerCare Starwalk <a href="http://www.starwalk.org.uk/">http://www.starwalk.org.uk/</a> I did it last year with E but after the first couple of miles I seemed to spend more time stopping and trying to get her to keep up than I did walking! Time to open up my Just Giving account again, wonder if I can link that to my blog? Will have to look into that. <br /><br />I started help to fundraise for CancerCare after my Dad was diagnosed with small cell lung cancer in 2004. Ironic that my parents moved up here a couple of years previously to work less hours and almost be semi retired. Good that he did, the docs got him diagnosed and treated incredibly quickly, the docs where the used to live would probably have never acted as quickly and got him the treatment basically save his life. A few months they gave him, told him the treatment would put the cancer into retreat and keep it at bay but not cure it, if he was lucky he'd go into remission for a year or 2. He's still in remission now, done far better than the docs would have ever imagined but it's cost him a lot, his health will never recover, he's on so many medications for his scarred lungs and trachea, high blood pressure and diabetes since he probably rattles. My Dad who used to be in decent health who had given up smoking after years and years, apart from the odd one on occassions, has been left disabled by the treatment. Did I give up smoking? Well I did, it took a few months, funny how the added pressure of knowing having smoked was killing someone I loved didn't help me give up, it just made me hate myself for not stopping.<br /><br />Last year I started smoking again. J's almost breakdown hit me hard, marriage amost went out of the window and it was a bleak time. I didn't stop trying to stop smoking and after trying the stop smoking service via the docs I ended up buying the wonderful book by Allen Carr <a href="http://www.allencarrseasyway.com/">http://www.allencarrseasyway.com/</a> I just stopped. The fact that I think a lot helped me stop when I finished the book, it put the power into my hands to overcome a nicotine addiction that kept drawing me back in. I have been tempted to smoke again but the words of the book still ring each time I think maybe I will and I quash that craving monster in my head.<br /><br />Hmm, how did this end up so deep and depressing? Something lighter? My mind that was whirling before has gone blank now. I wish I was one of those organised people. S is often coming out with really funny one liners but after while I forget them, I keep saying I must write them down but forget! I think I've turned into my mother! She was always forgetting things then once she got past 40 she started to worrying about being forgetful so then she got worse. Now she's less forgetful and stopped worrying about little things.<br /><br />Right - choccy time!<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-422498761834239326?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-1376792112765786672009-02-26T09:56:00.007Z2009-02-26T10:13:25.842ZSo much for the good intentions to post on here! Still, I have been on most days reading friends blogs instead. <br /><br />R has new glasses, she's thrilled because they're Bench ones and that makes her happy "cos E likes designer things so she'll be jealous". The logic of R! We were lucky, no decent kids frames in Boots that would fit her so I said she could look at the ladies ones instead. The Boots own ones with lenses were going to be about £30 with voucher so I gingerly let her have a look at the designer ones that were half price and WOW we got some there for £53 with voucher! I said that she could have them towards her birthday present as she really did want them and she does wear them full time. No doubt by the time her birthday arrives in April we'll forget about that. <br /><br />Hectic week all round. Monday J was due to go for a minor op that only men who don't want any more children can have! Booked in last month, we sorted out the kids, then my parents changed plans and went to see my sister earlier than planned. The only way around it in the end at short notice was for E to finish school early, go pick up S then get home to wait for R on her minibus. Not ideal but it was the only way to get it sorted. We got there about 10 minutes early, it was half an hour away on a clear drive so didn't want to risk being late. We were told they were just waiting for the doc to arrive, a GP from our surgery as it happens that goes there every Monday for the clinic. Half an hour later they were still waiting for him and after 40 minutes they were muttering "he's been late before but never this late". At that point I told J maybe he should suggest that someone picks up the phone and tries to find out why he's late! He did, they didn't have his mobile number (nice to see they're organised!) so they rang the surgery. They surgery hadn't thought to ring the clinic and tell them that the GP was ill and had been taken to hospital! Poor bloke, they were all muttering about him being late and he's very definately not going to get there. So, a week off work organised for J and all the other stuff for a whole week organised around that and it was all up in the air again. J rang work, they said he could work this week and have the week off in 2 weeks instead as we rebooked. <br /><br />Today R has the dentist, third time lucky as it was postponed twice last week, once for a sick dentist and the second time for an emergency so she got bumped off the appointment list - note to self, don't book a later afternoon appointment there again! So, another knock on from J being at work now this week is that R should go to her dads after school Thursdays, E is off watching Othello today miles away so won't be home to go anyway. S has a dieticians appointment at 3.30, again fitted perfectly with J being off so he could be here when R finished school in case she didn't go to her Dads and of course as it's chaos this week he can't pick her up this week because he's got a docs appointment at 3.30pm! So, R is going to have to take a key and let herself in the house, she has done it once before but isn't that comfortable doing it. Will have to make sure the school tell escort to make sure she can get in before driving off.<br /><br />On Sunday we took R to an inclusive swimming training event to help train staff at local leisure centres. It went really well, it was nice that she could go to something with us taking a step back, I helped her get changed then went and sat in the cafe and watched. Afterwards we got talking to the woman who runs the local inclusive sports sessions and R is going on Saturday as her helper after we were saying there's not much for R that she can do without me having to hang around in the background. <br /><br />So that's this week, maybe by the weekend I'll have caught up on the cleaning. Expecting J to be home this week I'd put off a lot of jobs over the last couple of weeks so I'd get on with things while he was here. Oh well, it's only housework.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-137679211276578667?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-34428623624629926512009-02-14T17:41:00.004Z2009-02-14T17:42:59.778ZThis week E has gone to stay with my sister about 300 miles away. Not long ago I took her to the station and she boarded the train to London, she needs to then go on the underground then on another train to get there at about 10pm tonight. R is staying with my parents until Tuesday pm so just S home and I was thinking earlier how nice and quiet it'll be for a few days.<br /><br />So why am I sat here wanting to cry because my baby is all growed up??!<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-3442862362462992651?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com1tag:blogger.com,1999:blog-1367744521396057585.post-81646369726523897322009-02-11T16:19:00.002Z2009-02-11T16:56:17.526ZCarer, a word that I never really thought of until I had a child with special needs. Before that I was a mum, part of my 'job' as a mum was to care but I don't think I would have ever been referred to at that time as a carer. Care giver seems popular in some areas but again it's a pretty woolly description that could be given to anyone. Once I had R and she needed a lot of extra care I was suddenly her carer as well as her mum, most nights I felt more like a robot especially as she needed round the clock care for 2 and a half years and if she had a cold or cough that really was 24 hours a day. People often said to me "I don't know how you do it" or "I don't think I could do that for my baby". Well, if I didn't who would? If someone had told me before I had R that I would have to stick a catheter down a tube that she used to breathe to keep her airway open, sometimes hundreds of times a day, have machines in the house, on the buggy and oxygen on hand I would probably have run a mile and said there's no way I could do it either. I didn't see it as a choice, it didn't cross my mind that I wouldn't do this job that was handed to me without warning. I know some people choose otherwise and knowing just how tough it can be then I'd never judge anyone who had to do that. Funny how people talked to me differently if it came to things like abortion and pre natal testing. I'm not pro life, not pro anything as far as I think but in my mind you can't force a woman to carry a baby for 9 months if she doesn't want to, that's a cruel cruel thought.<br /><br />I'm rambling again! No matter what I do I always end up starting to dwell on the months leading up to R's birth and the first couple of years of her life, I suppose watching her stop breathing in front of me and turn blue thinking "that's it, I'm going to lose her" had a huge affect on me and it's something that'll never leave me.<br /><br />Gone way way off what I was thinking when I started typing and I'm on the verge of crying! Should stop typing I suppose but it's helping me to ignore the bickering of the youngest 2 behind me. Break time for coffee methinks, glad this thing saves as it goes along.<br /><br />I started this blog as somewhere for me to let off steam and generally ramble on about life and all the everyday crap and wonders in it. I should find more time to sit and type because it does help to put things down and read them back, even if I don't end up hitting that publish button. I alwasy assumed that blogs were written by someone just for other people to read but I think the writer gets more than the reader from it. I've noticed things on other blogs that show where people have come from to read, I don't think I want one or I'd start to worry how many people or how few visited and what they might think etc. I'm probably just odd. <br /><br />Hubby has said he doesn't want to know the URL and that he considers this blog to be my space to say what I want, he knows that now more than ever I need somewhere to let go - he's been struggling with his mental health for some months now, that's what started the whole thoughts on being a carer today. I do trust him not to look here now, last year I don;t think I would have, he wasn't acting like himself and it nearly cost us our marriage. Depression, self lothing, self harm, anxiety all rolled into one mixed up person. I stopped feeling like a wife, I was more like his mother. I don't want another child, I want a husband. Most of the time now he's here, occassionally he slips, he's quiet and just doesn't interact with anyone for hours. Doc was great, anti depressants, not sure they're working well at the moment, and a quick appointment with a therapist. That was great, except it took until the maximum number of appointments that 'service' allowed for him to finally open up enough for her to get to the bottom of how he was really feeling and now she's referred him onto another 'service' (probably in the room next door of the same part of the hospital damn I need some growly smilies) and their waiting list is 9 months!!! Great, just hold on a while dear and we'll get you the help you need. That reminds me, I don't think he's heard back from her to find out if he's been accepted on that waiting list, I think I need to nudge him to get back to the GP for a chat about that.<br /><br />I'm worn out now, done too much thinking for one day.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-8164636972652389732?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-17324603516773278712009-02-04T11:54:00.002Z2009-02-04T12:08:03.651ZYesterday I got some mince out of the freezer but forgot to get it out early enough to defrost yesterday, probably a good thing because J was working late, E was at sign language lessons and I had to go into town after school to buy new shoes for S.<br /><br />The Spag Bol is nicely simmering away on the cooker now, it's so much nicer if you make it in advance and reheat it later. YUMMY! I use a recipe that Mum was given by her Italian neighbours when I was about 5, it's not so much a recipe in as much as you throw in certain ingredients in the amount you want to and cook it. <br /><br />Mince<br />onion<br />garlic<br />dried basil<br />garlic salt<br />tomato pureee<br />chopped toms<br />and today I've added mushrooms cos they needed using up before they went totally manky in the bottom of the fridge.<br /><br />I've gone posh and bought some fresh spagetti yesterday from Morrisons, not sure why I think I just like a change, and the fresh stuff doesn't have to be forced into a pan like the perfectly straight hard dried stuff.<br /><br />Genetics - on Friday R has her occassional update appointment with the genetics people. They come up from Manchester once a month for a clinic in Lancaster, this time it looks like they've moved the Children's Outpatients from the purpose built bit in the 'new' bit to the 3rd floor of the womens unit! I'm sure that was part maternity, the bit the closed years ago and started to only use the floors below, thinking as I type now I think they'd closed it at about the time R was born almost 15 years ago - that was when they were building the 'new' bit. I think I'm getting old now, I think of things being new when they are clearly several years old now!<br /><br />I was E to be tested for the genetic deletion, the genetics people have always tried to put us off but now even E wants it done and at 16 I think they need to stop waffling about how it 'might affect her one day on forms even if it's negative' and concentrate on the fact that in some cases people with the deletion have no noticable medical problems when they are young!! I know this, I have met at least one adult who now has health problems whos son died after the complications post surgery who had the deletion and who went through hell for several years at the hands of the so called 'experts'. This lady is at uni now, and has no learning difficulties, no health problems at earlier ages but now has lots because no one believed her when she kept telling them something was wrong. Genetics seem to be sure that if E had the deletion 'we'd be able to tell, she'd show some signs even if it was the facial features'!! If that was the case why are they still diagnosing lots of parents after their kids. <br /><br />E doesn't plan on having kids yet, she's nearly 17. I didn't plan on having kids at 20 but still found myself pregnant when I was 19. If E had the deletion she would have a 50% chance of passing it on in each pregnancy, now I'd rather they test her and risk a potential problem with life insurance one day than leave it and have her end up with a child with disabilities without warning. If she did have the deletion at least it would be her decision to have kids if she wanted to run the risk and I'd be 100% behind her whatever.<br /><br />People see R and think the syndrome isn't that severe. Wrong, R nearly died as baby, babies do die because they have such severe heart defects sometimes, others because they don't have a working immune system, others due to complications after treatment, others don't make it that far and die before birth. R is one of the lucky ones, no severe heart defects, minor problems covering most of her body and dodginess in her windpipe - currently trying to ignore the fact her voice sounds a bit husky so could mean she needs more surgery this year! Appointment with ENT man in March already booked anyway. <br /><br />Best go check that spag bol and sort out some lunch!<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-1732460351677327871?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-170354076864835262009-02-03T12:13:00.003Z2009-02-03T12:24:49.133ZYesterday I had a title and something to type but no time to get it done. Today I have forgotten both the title and what I was going to put!<br /><br />Yesterday morning I got to go into town and have coffee with some internet friends from NI who I'd not met before but who I'd been laughing and chatting with online for at least a couple of years, probably more.<br /><br />I've got all sorts of internet friends. The first ones I met via the Channel 4 chat room and forums, followed closely by people I met via Special Kids both online and for real life coffee. Then there are the Forum Towers lot who I met via one of the above friends and some that I keep in touch with occassionally via the VCFS groups and some of those I met with at the annual conferences run by Max Appeal. I hope this year it's closer to us so we can get there again. The South West and London locations weren't practical for a 1 night stay or a 1 day visit, Leicester was bad enough for a 1 day trip! I must go look at their website and see if they've mentioned where the conference will be this year.<br /><br />SNOW! I think I was going to say something about snow yesterday? Or was I? Maybe it was Freecycle? My brain briefly blinked but it's gone again. I must sort out my camera, still got photos on there from just after Christmas and here we are in February! Snow has gone by the way, except on the high ground.<br /><br />I had a phonecall earlier from the Housing people, well 1 man from the housing office anyway asking if I'd take part in an Estate Walk later this week as I'd indicated I'd be willing to do so on a survey about tennants involvement. Waiting for him to call me back to arrange a day and time.<br /><br />I should probably be doing something domesticated, housework is a necessary evil in my book, although I do occassionally enjoy a good clean out of a room I'd rather only do what I really have to. I've been looking at the Roomba vaccuums that people are getting lately but they have a downfall, you have to pick up all the crap off the floor or they're not really worth it. If I've got to move stuff first I may as well just get the hoover out anyway!<br /><br />Oh well, I still can't remember the brilliant stuff I was going to blog about yesterday, I'll probably wake up at 2am in the morning and remember what it was.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-17035407686483526?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-23036508336448403132009-01-26T13:06:00.002Z2009-01-26T13:16:46.981ZHmm, well I managed to post twice last week, not bad considering I was so busy. <br /><br />I have finally finished sorting out the girls room!!! Several black sacks are now piled up outside, wheelie bin was already overflowing because I forgot to put it out last time they emptied the black ones. Of course it was ME that forgot cos no one else would notice!!!!<br /><br />Fed up with people today. Ended up crying last night after several days of feeling like no one else in this family does a single thing without being asked to. I can completely block a doorway with stuff waiting to be moved, do you think any one of them would take the hint??! <br /><br />Friday night was a girls night!! YAY!!! Great company, a few drinks, food and a late night of putting the world to rights before a crashing out there. I got home about 10.30 Saturday morning to find the computer chair busted, it used to be a high backed chair, tis now a stool! No arms and no back but at least it's still usable. The computer desk had the pull out bit pulled out with stuff still on it ok but leaning downwards at 45 degrees. "oh it was so funny" Yeah, course it was, I laughed to hard when I got home to find things in my house BROKEN and washing on the floor, why would anyone else think to put dirty clothes in the washing basket - no hope anyone would notice the 3 overflowing washing bins and actually think to put any of it in the washer!! No washing up had been done since I'd left the house, I don't suppose they would until they ran out of cups, glasses or plates. <br /><br />Yesterday, I spent hours in the girls room again, J said he'd help and do S's room as long as S helped. No problem! I shift another 2 baskets full of dirty washing, 2 black sacks of rubbish and 2 sacks of stuff for charity. They put toy cars away, fix one drawer, sort out some clothes on the floor and put some books on the bookcase. Probably would have got it all finished without the 45 minute break to sit on the loo with PSP in hand!!!<br /><br />I have the living room to tidy now before parents pick up S and then come back here while I go pick up J from work and drive him miles to an appointment. After that I think I'll go to bed!<br /><br />RANT OVER<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-2303650833644840313?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-62212638226829464252009-01-22T14:23:00.002Z2009-01-22T14:31:43.216ZSo much to say but when to find the time?!<br /><br />My parents are getting a new bed, not the first one they've got recently but hopefully one that will let mum sleep all night without back pain. The new one they've already got is going in the spare room, king sized both of them, and the older double bed that was in the spare room is coming here for S's room. 5 years old and he loves to have a double bed and sleep sideways. He's currently got a bunk bed with a double underneath and a single on top. I was planning on getting bunks for the girls so the bunk S currently has is going to the girls room, currently they have a cabin bed and a high sleeper. Actually, they DID have a cabin bed and high sleeper, I have just dismantled the cabin bed and it's now a pile of chipboard on the landing. <br /><br />I went out yesterday to buy some storage for the girls room, it's not a big room, width is just a bit more than the length of a bed! One chest of drawers, a desk and some plastic drawers is all the have but now I've emptied R's cabin bed they need more. I got more yesterday, 1 canvas wardrobe and some things to hang it it for shoes etc, 2 sets of bright pink plastic drawer things, a 3 shelf thing for some books and a pink basket with handles. Here's hoping it all fits and takes all their crud! Next step is to get the wardrobe up later today or none of us will get to our beds with all the stuff piled up on the landing in front of the other bedroom doors and E's bed blocked by all the stuff I had to move to reach the cabin bed. GIRLS!!! Teenager girls are neither delicate, dainty or tidy! I have filled a laundry basket 4 times since yesterday trying to get sorted in their room. They had fair warning and last night I told them I would be going in there WITH THE BLACK BIN BAGS!!! Ultimate threat, I will throw things away, I will sort things out and I will hide essentials like hair straighteners!! Evil me!<br /><br />Oh well, best to sort the washer that's finished and load it up again, I think I'll be doing a lot of that for a couple of days.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-6221263822682946425?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-32007724534961377162009-01-19T18:47:00.002Z2009-01-19T18:55:52.618ZSometimes I wonder just how I manage to fill the days without actually going out to work. In honesty though, when I sit down at the end of the day I can list everything I've done and sometimes just thinking about it makes me tired. At the end of a busy day I might get around to listing it, still lots to do today.<br /><br />Girls are at their Dads, it's their auntie's birthday today so they won't be back until later. S is supposed to be putting his pj's on but in reality is glued to the tv half undressed. J is out giving blood, I was going to go earlier but had a cough last week so decided to wait until nex time, they're up the road every 2 or 3 weeks so it made sense to just wait for next time.<br /><br />I think I will have to start only blogging when no one else is here, every time I get interrupted my brain goes blank and I forget what I was about to type! This time it was S wanting to know if I'll make orange jelly tomorrow and also what time is Daddy back. My replies yes and I don't know.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-3200772453496137716?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-8073383412240077902009-01-18T15:31:00.004Z2009-01-18T15:44:43.505Z<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_tlkVtSRXuuw/SXNLwH62cKI/AAAAAAAAAAw/VASzGdDOIEY/s1600-h/Kids2.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_tlkVtSRXuuw/SXNLwH62cKI/AAAAAAAAAAw/VASzGdDOIEY/s320/Kids2.jpg" alt="" id="BLOGGER_PHOTO_ID_5292657277222154402" border="0" /></a><br />Another day, another post.<br /><br />Photo's today I think. Just got to work out how to put them up. Here goes.........<br /><br />Well, it's at the top of the post instead of where I thought it would go but never mind, it worked! That's the 3 little monsters, or not so little now for 2 of them!<br /><br />Who to give the link to my blog? Todays question. Everyone? Not sure, I thought that if I'm outpouring general stuff I would but I want this to be somewhere I let lots of things out so maybe not everyone? Or do I say everyone then if I put anything about someone do I depersonalise it? Something to ponder for a few days methinks.<br /><br />Death, there's been a lot of it this week sadly. R lost a classmate the other day, he'd been poorly for a long time but it's still hard for the kids and staff of her very special school. R coped really well, well she did on the surface and probably coped better than previously. She accepts things, often without question, and can come accross as uncaring. Death is one of those things she accepts. Someone dies, she cries for a minute or two then wants to know "how, why and where". This time she didn't, she was upset, then wanted to know if she could go to his funeral. School have been great, they sent home a letter with R on Friday saying she'd expressed a healthy interest in going and they thought she had discussed things in a mature way and requested herself to go. They will take her and bring her home afterwards, I was happy to take her before they offered but I think it would be nice for her to go with people who knew A and can help her cope and discuss her feelings about him more than I could.<br /><br />E was upset yesterday pm, I think I mentioned it here. Her Grandma was upset on the phone as she told E about her friend passing away yesterday. E told me later on in the day when she could talk about it, I think it was the fact Grandma was upset that made her cry and I think probably realising that Grandma is old. Then she told me that her aunt was visiting Grandma this weekend but was busy today visiting a friend who had just lost her husband to suicide. So much sad news in such a short space of time.<br /><br />Good news though in the form of a Special Kid receiving a much needed new liver! I suppose news like that has a sad side, someone else died for it to happen but they must have had a very special family who said "yes" when asked to donate organs. <br /><br />I think that's me done for now, I will have to make sure I don't run away with myself and end up with huge long posts every day.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-807338341224007790?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com1tag:blogger.com,1999:blog-1367744521396057585.post-14220921923794660012009-01-17T15:36:00.000Z2009-01-17T15:50:07.203ZStormy weather - that's what they said when I finally woke up today and put the radio on. 60% chance of severe winter weather they said, but never mind that's a 40% chance of normal winter weather. That set me to thinking, surely snow, wind and heavy rain is normal winter weather anyway?? Hope they've over reacted, J is helping a mate tomorrow marshalling at a rally event miles away in the NE, they're setting off at 6am! Rather them than me in January!<br /><br />I said finally woke up before, for the first time ever I had breakfast in bed brought to me by my lovely eldest daughter. I think she'd got fed up of watching the other two since they'd got up so came and woke me with fried eggs on toast at 12.20pm! Lazy moo I am! Not that I get to sleep in that late often, I could happily do it every day I think, a morning person I ain't. <br /><br />Emily had a call from her grandma asking her to go into town and meet her there, they'd had someone hit the side of their car, or her Dad's car at least (paternal grandma) and was a bit shaken up, calling from the hairdressers and no injuries though. Dropped her off after J had said she'd been crying upstairs so will have to spend a bit of quiet time later having a chat to see she's ok. Not easy to try to console anyone in the house with a mad 5 year old wanting to be in the forefront of everyone's business and a 14 year old with learning difficulties who starts to cry if she sees one of her siblings upset. :S<br /><br />R, 14, has a genetic disorder with a host of different names depending on which doctor or professional or even area you live. Velo Cardio Facial Syndrome, Di George Syndrome, Schpritzens Syndrome, etc. The latest name is now 22q11.2 deletion syndrome. Technical name that really and I think it's a rather clinical name aimed at the professionals rather than parents. I think I'll try to add a link here to a UK site and a US site about the syndrome, let's see if i can work this thing right.<br /><br /><a href="http://www.maxappeal.org.uk/">http://www.maxappeal.org.uk/</a><br /><br /><a href="http://www.vcfsef.org/">http://www.vcfsef.org/</a><br /><br />Hope that's worked. <br /><br />I had to go get some jelly out of a pot for S, now I've completely forgotten what I was going to put. Oh well, that'll do for now, back when I remember what I was going to put!<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-1422092192379466001?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com0tag:blogger.com,1999:blog-1367744521396057585.post-41322494508552551592009-01-16T22:30:00.001Z2009-01-16T22:30:59.804ZOk, here we go!<br /><br />To blog or not to blog? That's been a question I've been mulling for a while, thought at first I would just read others but decided to give it a go.<div class="blogger-post-footer"><img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/1367744521396057585-4132249450855255159?l=purplechimp.blogspot.com' alt='' /></div>Mumhttp://www.blogger.com/profile/08443155094903180270noreply@blogger.com1