tag:blogger.com,1999:blog-52505921243622482522024-03-08T16:40:01.549-08:00Mum on wheelswheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.comBlogger45125tag:blogger.com,1999:blog-5250592124362248252.post-43455551252994905562010-07-26T00:11:00.001-07:002010-07-26T00:11:15.462-07:00<br /><br /><br /><br />wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com0tag:blogger.com,1999:blog-5250592124362248252.post-17331107681227378532010-05-30T09:17:00.000-07:002010-05-30T09:17:00.893-07:00New challenges aheadBeen a bit under the weather last couple of weeks and find myself in bed today and y'day after having struggled through things for a while. Anyway, is nothing major but just makes the practicalities of family life more difficult.<br /><br />Amelie is coming on a treat, clapping, shouting, eating lots, playing and learning every day. It is both a joy and a privilege to watch. She's refusing to crawl but is starting to stand hence the beginning of new, more independent horizons. I am waiting for it but don't think I can fully prepare myself until we're in the thick of it. Obviously there are things to do in preparation, like the safety at home stuff but managing it myself on a physical level and feeling capable in my management once she's properly on the move are things I'm hoping I will master,probably<br />proceeding a greater period of trial and error than most!<br /> <br /><br /><br /><br /><br />wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com0tag:blogger.com,1999:blog-5250592124362248252.post-61062126316029873562010-05-05T11:31:00.001-07:002010-05-05T11:31:11.578-07:00Overcoming obstaclesI have decided I need to start taking playing with Amelie a bit more seriously. When I say seriously, I don't mean strict ahendas and lesson plans are to be implemented but more that physical play between a mother and child becomes a little less conventional when one of you can't get down on the floor. We have put a booster seat on a chair by the dining room table so today for the first time, I used that with her so we could play together just us two. It worked well apart from she's at the learning-about-gravity stage, hence everything she touches falls on the floor where I can't go which means I have to involve a 3rd party for retrieval. Am aware that some days this will infuriate me greatly but it is already teaching me that the best way to the journey towards achieving what you want out of life is to keep calm. Surely this can only be a good thing? <br /><br /><br /><br /><br />wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com1tag:blogger.com,1999:blog-5250592124362248252.post-20449453476273987092010-05-04T12:42:00.000-07:002010-05-04T12:53:11.753-07:00Bit more progressI do like it when people make progress. It uplifts the spirit somewhat. As per last posting, I am trying to manage my reluctancy to look awkward when doing things with my child in public, so I can actively participate in all areas of her life. This includes feeding solids from a wheelchair to any highchair the respective visited venue deems fit for service. I fed her her dinner in a restaurant for the first time, swallowed my self awareness and got on with the feeding, only to find that we both really seemed to enjoy it and much fun was had by all involved. I've always had instances of feeling awkward since I became disabled, getting out of a car, having to have my food cut up in restaurants etc increase self awareness in a negative manner. I am now learning from my child that if I want to be hands on with her, I have to swallow my pride and dignity and just get on with it and be as hands on as possible as actually it's the best way forward for all concerned!<br /><br /><br />wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com1tag:blogger.com,1999:blog-5250592124362248252.post-20336257936590271972010-05-01T08:19:00.000-07:002010-05-01T08:39:53.434-07:00Out and aboutBeing out and about with Amelie is 2 things: 1. Hard work 2. A lot of fun<br />The getting out of the house routine seems, in general, to be easier, as we've got more organised, more adeft at coping with everything and we are doing it all the time. It took quite a lot of time to get there, but I feel mainly this part of things is sorted and it's less stressful, so that's great. The bit I feel we have to concentrate on now is me being confident with her when we are out and me finding ways to manage her better so I don't feel that I'm relinquishing some of my responsibility, allowing respective able bod to play a bigger part than I'd like as it's easier. It's much more difficult when we're out and about as equipment such as highchairs etc make it difficult to get a chair round because they are too low or too bulky or whatever, when we are invited to peoples houses, she gets put on the floor where I can't go etc. I feel that this in turn makes me look like I'm not actively participating in my daughter's development and like I'm not really all that bothered and am not in control. I am very aware that people might think that but more importantly that Amelie might start thinking that Mummy is more interested in having a nice time when she's out and that someone else can look after her needs. I guess I just need to be more patient with myself and persevere more even if I am very aware of how awkward it all looks to other people. I just have to get over that and know what is most important as we develop and grow together as a family.wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com1tag:blogger.com,1999:blog-5250592124362248252.post-7577087108084452882010-04-27T12:48:00.001-07:002010-04-27T12:48:21.732-07:00Weekend awayWe've been away in Somerset since Friday night. So far, so good. Have done the rounds and seen friends and family and it's been really nice. I just wish I had more energy so I could get up at 8, push myself around all day, look after my baby, travel to and from people for social stuff, hold it all together and still be able to spend more time with my husband instead of having to go to bed and straight to sleep because I'm knackered. Mostly I find it easier being at home with<br />Amelie at the moment than travelling away with her for a few days or more. I hope<br />I won't feel like this once we've had a bit more practice. The thing is, at home, i'm the boss. I know what needs doing and when. Granted, I have help<br />but ultimately, as 2 women, one of whom works for the other, things get done the way I need them and we both know it works well. When I'm away, I'm with my husband who I dearly love and respect but he has a different way of doing things and even after my days of list writing and organising pre trip, once we've been away 1 night things have been moved and I can't just tell him that I need X which is in the corner of such and<br />such a bag. That stresses me out as I really think it's easier<br />even for most able bods to know where stuff is so they don't waste time and get stressed looking for stuff, never mind when you throw a spinal injury and a 10 month old baby into the equation! More practice definitely needed, just hope that myself and AMP (Alpha Male Parent) can work this out. And no, that doesn't just equate to him saying 'yes dear'! <br /><br /><br /><br /><br /><br /><br /><br /><br />wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com2tag:blogger.com,1999:blog-5250592124362248252.post-59241053925192162032010-04-17T11:01:00.000-07:002010-04-17T11:15:50.233-07:00FrustrationIs hard going at the moment. We're both really tired and I feel like my tiredness is just going to go from bad to worse. We don't even seem able to manage to plan a night out, let alone sort out the 2 week holiday we were meant to be sorting out for end of June. We have also discovered that Amelie has a temper and is starting with proper tantrums already hence spending some of last night reading up on various behavioural strategies. Sometimes, like currently, I wonder whether I'm going to be any good at this or whether sheer exhaustion and frustration is going to get the better of me and I'll end up in floods of tears on Supernanny with a screaming, uncontrollable toddler. MY screaming uncontrollable toddler. Then I'll just want to shoot myself. Need to find more energy from somewhere. Quick.wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com1tag:blogger.com,1999:blog-5250592124362248252.post-30783701931753327542010-04-09T19:27:00.001-07:002010-04-09T19:27:24.752-07:00Writer's blockWas doing so well with blog then seem to have developed writers block hence current lack of postings. Am hoping inspiration will soon return, once again enabling me to report back in such a witty manner! <br /><br />wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com1tag:blogger.com,1999:blog-5250592124362248252.post-75864726010408229672010-03-25T15:15:00.001-07:002010-03-25T15:15:08.497-07:00Life with babyHusband and I constantly fighting, intimacy is a dark and distant memory. Both exhausted in different ways. Am super stunning at min with huge great cold sore and massive spot under nose. Joy. 9pm is late to bed for me at min. What kind of a life is that??<br /><br /><br />wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com1tag:blogger.com,1999:blog-5250592124362248252.post-61826949241303513272010-03-20T11:59:00.000-07:002010-03-20T11:59:02.932-07:00YukAmelie and I are poorly<br />sick. Bloody awful tummy bug, sickness and diarrhoea. Not nice. She was sick all day y'day and today. Think she's on the up. I haven't been sick but horrible tummy. <br /><br />We've done really well, it's the first time we've had to take her to see a doc. Not bad for 9 months. Is horrible watching your little honey be so sick and miserable when all you can do is watch, comfort them and follow doctors advice. Is all part and parcel of life tho.<br /><br /><br />wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com1tag:blogger.com,1999:blog-5250592124362248252.post-953650174530008562010-03-18T13:54:00.000-07:002010-03-18T14:01:13.910-07:00ExhaustionJust needed to post that I passed out a couple of nights ago and am completely and utterly exhausted. Feels like I really have nothing to give at the moment yet I must still give to my husband, daughter, parents, friends. I hope it will stop soon. It just hit me like a bullet from nowhere. I have to have bloods done by my GP. I hope it's nothing bad. I don't have the energy to worry right now. Please God, let me get better soon so I can function again, as a wife and a mother.wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com1tag:blogger.com,1999:blog-5250592124362248252.post-49986294001891176832010-03-13T07:20:00.000-08:002010-03-13T07:43:04.797-08:00Impatience and solutionsOk, remap look very cool and will hopefully bear some fruit but yesterday I was having a look at the Disabled Parents Network equipment list and ended up finding something called a comfort carrier which is basically a papousse for babies from 3 months up to 2 years. Check it out here http://www.babybjorn.com/en-gb/Eng/products/Mobility/BABYBJORN-Comfort-Carrier/ The nearest stockist to us is JoJoMamanBebe in Hale who have ordered one in for me which should be in at the end of next week. I had to pay for it upfront and at £130 it's not cheap but I explained my situation and they said I could try it and if it's not right they'll refund me straight away. Let's just hope Amelie's not sick in it when we try it out! Maybe I should create a new career in reviewing disability aimed independence products with a heavy slant on parenting and cooking aids.<br /><br />I know as Amelie gets bigger she'll be moving around more and more and probably want to be strapped in less and less but I figure we can use it as an alternative to a pushchair when we need it. Trial and error is an expensive business, especially as a disabled person buying products to help increase independence but I figure as long as it's not extortionate it's worth buying in the vein hope that it really will help in just the way I need. Am hoping my optimism will pay off in spades :-)wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com0tag:blogger.com,1999:blog-5250592124362248252.post-7554338634152128262010-03-12T04:39:00.000-08:002010-03-12T04:52:33.265-08:00Friday feelingLooking forward to the end of the day so we can spend some time with Scruff. Been a successful week but will be nice to have him home for a couple of days. Drive still being done, nice workers have said they can make me a makeshift ramp if needs be. We can just about manage to get in and out without it for the weekend. <br /><br />Mother's day on Sunday. Is a very special first for me. Becoming a mother makes you realise that it is important for a lot of people that these things don't just go by unnoticed, even if Scruff does think such events were invented by Hallmark to boost sales between two more significant dates in the calendar, such as Valentine's day and Easter. <br /><br />Have also written to a charity called Remap who are a bunch of very clever engineers who design one off equipment for disabled people, the type of stuff not to be found on the market. I've put in a request for them to make me something that fits to my chair that I can use to take Amelie out in and that is more comfortable than a sling. Let's see if they get back to me. Fingers crossed.wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com1tag:blogger.com,1999:blog-5250592124362248252.post-38928927889348028122010-03-11T04:57:00.000-08:002010-03-11T05:14:50.433-08:00HmmmmmOk, bit stumped now. The sling worked really well with the electric chair but am not needing to use it so much anymore as I can now drive from my manual chair etc. So for the most part I am much preferring using my manual chair. But, as in everything in life, it has it's downsides. The sling catches on the wheels and because I'm not just pushing a little joystick to zoom around the place and am actually physically exerting myself, Amelie feels heavier in the sling hence it becoming an unsustainable option for more than a couple of hours at a time. So, back to the non pushable pushchair it is for us. Am trying to think of more satisfactory options for the future as I would prefer to have her with me when we're out and about, naturally, as her mother.<br /><br />Other current focus is our drive is being resurfaced. Normally that wouldn't cause all that much disruption but they have had to take my ramp away until Sunday which allows me access from the house to the outside world to let the concrete set. Joy. Never a dull moment when living with paralysis.wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com1tag:blogger.com,1999:blog-5250592124362248252.post-51782592183206530742010-03-08T13:04:00.001-08:002010-03-08T13:08:09.237-08:00FreedomWent out to see a friend today with my gorgeous girlie on my own for the very first time. Driving to go and meet her with amelie in the van made me smile and grin lots. Was the bestest feeling ever. Know I won't be able to do it all the time but as much as we can would be totally fab. Thankyou so much hugsband for playing such a pinnacle role in all this. Love you heaps and heaps.wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com0tag:blogger.com,1999:blog-5250592124362248252.post-34396713062966832672010-03-07T12:57:00.000-08:002010-03-07T13:06:24.412-08:00Big news today....actually got in van and drove with Amelie in van, just me and her, for the very first time ever. I was far more nervous on the run up to the whole thing than when I actually did it, but then one almost always has more time to think on the lead up to important events than during the event itself. Did feel very freeing though and is definitely a great confidence builder, the hardest thing was just having the balls to do it in the first place. Now all I need to do is just keep calm and hold it together.wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com0tag:blogger.com,1999:blog-5250592124362248252.post-42518546611997273092010-03-06T03:48:00.001-08:002010-03-06T03:48:02.256-08:00NightsAt the moment I need all the sleep I can get. Being a mother is strange at times. You spend a lot of time in the very early days wishing your child would have proper periods of sleep lasting 4-5 hours at night and more. We don't have a clock in our bedroom so when I wake up in the middle of the night, I never know what time it is. Last night I woke up and couldn't go back to sleep for ages because amelie was so quiet and I got really<br />anxious and worried as I couldn't hear her. I had to wake<br />Scruff up because I was so worried but he just went straight back to sleep (I can't blame him, it's not like he hasn't waited long enough for her to start sleeping better!) It's the little things like that that remind me what a pain it is being paralyzed. Most mums would just be able to get out of bed and peek round the door, consider their neurosis and then just come back to bed and drift off. Must remind husband to bring baby monitor up tonight so I can see her on camera if I need to be reassured.<br /><br /><br />wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com0tag:blogger.com,1999:blog-5250592124362248252.post-30099487037960743162010-03-04T11:01:00.000-08:002010-03-04T11:45:18.558-08:00Quite a busy day today, well, last couple of days actually. Getting things sorted in the independence department. Fingers crossed, I will be totally fine to drive my van from my manual chair as from tomorrow which is great as I won't need anyone to help me transfer into my electric chair when I go out. Does mean am going to have to be more organised and take a spare battery with me when I go out as although my chair is manual, it uses assistive technology which helps me push. Must get out and about pushing all over the place to get my stamina up and try to stay ahead of Madam once she starts walking. Scary biscuits. So van main thing on agenda this week. Next week work should hopefully start on our drive so they can redo it and flatten it so I'll be able to get onto my tailift and into my van without any help. So by end of month, if all goes according to plan, I should be able to use the same chair all the time, let myself in and out of the house, get into my van and go out totally unaided, just like most 35 year olds do most days without thinking. Question is, whatever next...........?wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com1tag:blogger.com,1999:blog-5250592124362248252.post-59537885895557713302010-03-02T13:18:00.000-08:002010-03-02T13:27:25.488-08:00Great inventionsUsed the sling today properly out and about with Little Miss for the first time and it worked a treat. Went to quiet park to try it out as didn't want people staring but now have my confidence with it and am raring to go! Maybe I can start concentrating on being a better wife now for a bit! Wifedom and motherhood are both relatively new and demanding roles for me and I recognise the opportunity for growth and improvement in both areas. <br /><br />Was s beautiful day today and I enjoyed breathing in some good, fresh air with my little girl. Let's hope there are many more good, sunny days to come. Roll on summer!<br /><br /><br /><br /><br />wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com1tag:blogger.com,1999:blog-5250592124362248252.post-36471340991824660922010-02-28T14:10:00.001-08:002010-02-28T14:10:02.576-08:00Park life<br />Pushed Amelie today on her very first swing! Proud <br />moment for me seeing her enjoy<br />it and being able to push her!<br />Just a shame we can't be put for long as it's so bloody freezing! Me thinks the term should actually be global<br />colding. Any thoughts?<br /><br /><br />wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com1tag:blogger.com,1999:blog-5250592124362248252.post-70239585242934912942010-02-25T09:05:00.000-08:002010-02-25T09:34:11.883-08:00Getting sortedGood things about today.....my front door has now been sorted out so it opens automatically. Hurrah. First time in years I can get in and out my front door totally independently and I can let visitors in and out. Also good is that we have discovered that although not absolutely brilliantly, I can actually use the sling with Amelie so she can sit almost on my knee and I can cart her about like that so she can be with me instead of having someone else push a pushchair with my baby in it that I can't use. Also the engineers phoned about my van to tell us they can build me a clamping system next week which means as soon as they've done it, I can use my manual chair to drive from and my electric chair will be no longer vital to my life. Another thing is that the playpen I'd ordered from e-bay came today and although not brilliantly assembled yet, she seems really happy to be in it and it will work well with height and playing/interaction. So we are really getting there with independence/freedom aspect. Fab. So then at a time when independence is being achieved in leaps and bounds, do I have to feel bored?wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com2tag:blogger.com,1999:blog-5250592124362248252.post-86248089938056716832010-02-23T13:44:00.000-08:002010-02-23T14:17:27.782-08:00HOW much stuff?Today was the first day I went out driving in the van, baby in tow, with no papousse but a baby seat, a pushchair, a person to help us plus myself in an electric chair. In order to turn even thinking about leaving the house into a relatively calm and stress free exercise, I had to try and come up with a way of getting in and out as efficiently as possible. So....baby seat first goes in van, gets strapped in etc, then pushchair gets taken out of cupboard and assembled but out of way of my access to front door so as I can go and open up van when everyone is finally ready to leave house, then I go to loo, then remind person helping to go to loo, then when all shoes etc on, check changing bag is firmly on back of chair and my handbag is stapped across my front with bottle, milk powder container, bib, baby wipes and purse so that any rummaging for bottles etc in changing bag strapped to the back of my chair is kept to a minimum if baby starts to get distressed and needs bottle quickly, then ask person helping to put baby's coat on, then check baby wearing dummy holder with dummy attached so she can't lose it and people have to start rummaging around on the floor to look for it, then pick up disabled badges on way out and check that person locking up has house keys. Then go out and open van and get into vehicle before shouting to person in house that tailift now ready to transport baby in pushchair and person with pushchair up into van, after you've reminded them to lock your front door and before taking baby out of pushchair and putting into car seat and then reminding person helping to put break on pushchair so it doesn't run into the back of me in the event of an accident, then close up tailift and take off bag strapped across me so I can get to steering wheel. Phew. Am exhausted already. Hopefully will all become second nature very soon.wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com2tag:blogger.com,1999:blog-5250592124362248252.post-60713662479243199652010-02-21T16:08:00.001-08:002010-02-21T16:08:35.643-08:00Learning from othersWas talking to my friend on skype the other day. She's German and has been following my blog. We were talking about playing and the fact that I've been using the sofa so I can play with Amelie where I can reach her as I can't get down to her level on the floor. She told me they have these things in Germany called a Laufstall and that they are really common. Basically it's just a raised playpen that sits quite high off the floor so babies are safe and can play in it but still feel a big part of what's going on around them as they're at the right height to join in with their surrounding activity. I found one on eBay and bought it. Things like this can unfortunately sometimes result in a somewhat unsuccessful and expensive experiment but the thing is, you don't know till you try. So we'll see.<br /><br />Still waiting on more progress with the sling, am really hoping I can use it. Is always good to know things are possible if you're prepared to hunt things down.<br /><br />wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com0tag:blogger.com,1999:blog-5250592124362248252.post-14849438438946168522010-02-20T15:14:00.001-08:002010-02-20T15:14:24.594-08:00First highchair<br />Gosh, my little girl now has her own highchair and she's been sitting there this evening waving from it!<br /><br />Was worried it wouldn't be right height for me or the tray at the front for her food etc would get in the way of me feeding her but it's fine. I kind of just have to sit at the side of her and reach over and feed her that way but it works fine.<br /><br />Also, another interesting piece, a friend of mine told me today that in Germany they have these playpens that are raised up high so the child can play whilst being at an adult's seated height. How cool is that? Would be fab for us. Must look into availability here.<br /><br /><br />wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com0tag:blogger.com,1999:blog-5250592124362248252.post-71065549373141691442010-02-18T14:48:00.001-08:002010-02-18T14:48:34.502-08:00Slings and thingsFished out the aforementioned sling today. Seem to have mislaid instructions though so yet to see if it's.a hit or not.<br /><br />Also discovered today that with.a few engineered adjustments, I will be able to drive my van from my electric chair hence completely revolutionising my whole life. Am awaiting next step with baited breath. Things seem to be coming together so well at the moment. Not sure whether to be sceptical or to just lap it up.<br /><br />wheelierachhttp://www.blogger.com/profile/18022308789384863493noreply@blogger.com0