tag:blogger.com,1999:blog-1634443036491852586.post5267201146524577614..comments2023-09-10T14:39:45.979+01:00Comments on Maggie and Alice: The Days Are Just PackedPaul Saxton and Shannon Forbushhttp://www.blogger.com/profile/01147130606938558502noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-1634443036491852586.post-88114261293694632342011-03-20T21:13:05.489+00:002011-03-20T21:13:05.489+00:00I get people jealous of the fact we get DLA and mo...I get people jealous of the fact we get DLA and mobility for our daughter, and i frequently get told that although i have 2 children with disabilities my life is no harder than anyone elses,just different. Oh and i'm lucky i don't have to go to work (because it's brilliant that my husband has to work every hour god sends and i can't contribute !)<br />I often want to tell people to go...do something to themselves, but i never do.<br />I never want sympathy but the lack of understanding can just be shocking. Can really empathize with how frustrated you must have felt.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1634443036491852586.post-59931755211049840742011-03-19T10:21:54.505+00:002011-03-19T10:21:54.505+00:00I don't understand how someone could POSSIBLY ...I don't understand how someone could POSSIBLY think that their muddling through is like your muddling through - thats just mentalness, and unfortunately there is always mentalness in the world. Their lack of empathy must really impede them in everyday life, so you can rest assured that they won't have a fulfilled life, if they cannot understand something as obvious as that.<br /><br />I hope Maggie's new peg helps, and in a way I'm glad for you that Alice is in no hurry to walk, she'll be one of those that just gets up and walks properly straight away, but enjoy the non-walkingness (its a word) while you can!<br /><br />BIGGEST HUGS EVER from Muppet & mini muppet & coMuppetellehttps://www.blogger.com/profile/01934479511967435613noreply@blogger.comtag:blogger.com,1999:blog-1634443036491852586.post-47885893445241933932011-03-14T14:05:42.099+00:002011-03-14T14:05:42.099+00:00Heart rending and honest as always.
How do we hel...Heart rending and honest as always.<br /><br />How do we help Paul, is there a way?Nicknoreply@blogger.comtag:blogger.com,1999:blog-1634443036491852586.post-75714137432444033692011-03-14T13:03:14.747+00:002011-03-14T13:03:14.747+00:00I can't believe that anyone could think that y...I can't believe that anyone could think that your 'muddling through' is not that different to their muddling through (unless they too look after a severely disabled child). <br /><br />Without wishing to engage in hyperbole, I would hazard a guess that it's about as different as a Tsunami is from a leaking roof.<br /><br />For most of us, muddling through involves nothing more than dealing with a few trivial, inconsequential, inconveniences each week (about which we tend to make too much fuss and to which the best response is "get a grip!").<br /><br />The tragedy for Maggie was so huge and permanently life changing and the consequences for your family are so continuously heartbreaking and exhausting that it is hard to know how you begin to cope - let alone continue with so little support and so many ignorant comments.<br /><br />Your blogs are never boring - even when you do remind us how much you have to deal with - they help us keep a sense of perspective and empathy in our lives. That kettle that broke this morning after just six months - a nuisance but really nothing to blog or twitter about (though I won't be buying a De'Longhi again).<br /><br />I am glad Alice is doing so well (and that you are not worrying about her walking - she'll get there in her own good time). I hope Maggie's op helps her put on weight - and that the dentists can sort out her teeth without too much difficulty. The video was lovely - and poignant. <br /><br />I don't know whether Maggie can use a normal dummy but it might be possible to get special safety ones that encourages her to chew etc, and so help her teeth and jaws develop. It might also help comfort her in the car - but there again it might not and I am just speculating wildly because I would like to help but doubt I can do much that is practical. So I'll shut up for now.<br /><br />As always, thinking of you all.<br /><br />Cheers<br />HuwHuw Sayerhttps://www.blogger.com/profile/07973007356729575482noreply@blogger.comtag:blogger.com,1999:blog-1634443036491852586.post-985199452208081742011-03-14T07:26:44.927+00:002011-03-14T07:26:44.927+00:00Just to say, can you get referred to WCS about a b...Just to say, can you get referred to WCS about a buggy? My daughter Emma (18mths Athetoid CP) couldn't tolerate a regular pushchair, basically she was spasaming with the effort of trying to remain still in it, she now has a specialist one and it has changed our lives really. Best wishes Maggie for your upcoming operation.Anonymousnoreply@blogger.com