tag:blogger.com,1999:blog-8669889792701619840.post5667312063635213344..comments2018-07-25T19:19:19.502-07:00Comments on Seraphina's World: Just stuff really..Carolinehttp://www.blogger.com/profile/05768108015010129927noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-8669889792701619840.post-23310184788884338642009-01-24T01:16:00.000-08:002009-01-24T01:16:00.000-08:00Dear Caroline!I'm one of Claire's friends and have...Dear Caroline!<BR/><BR/>I'm one of Claire's friends and have been following Seri's story, your troubles and your struggles. My heart goes out to you and your family for all the hardship you have been through, and for all the hardship that you are facing. You are doing a magnificent job raising your family!<BR/>I am the mummy of a now 4-year-old boy with spastic diplegia. While each child is different, the shock and sorrow that hits a parent after receiving a diagnosis (even when it has been floating around for a while first) is the same. I went through many of the same thought patterns that you are going through now. The grief you feel is real and acceptable and understandable. So is the loss! And so is the worry and the fears for the future. Most of this will never go away, but it will change, and you will find ways to cope with the CP world, the support networks, and the medical establishment. Please allow yourself to express this grief, and to feel the grief, and talk about your situation to people who will listen. <BR/>I will be more than happy to talk to you, if you are interested, and I am sure that Claire can provide you with my contact details!!!<BR/>Lots of love,<BR/>Rikke.<BR/><BR/>You may know this poem already, and it may make you cry (I cry when reading it), but still it is highlighting the beauty and joy in life with a 'special' child:<BR/><BR/>WELCOME TO HOLLAND<BR/><BR/>by<BR/>Emily Perl Kingsley.<BR/><BR/>c1987 by Emily Perl Kingsley. All rights reserved<BR/><BR/>I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......<BR/><BR/>When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.<BR/><BR/>After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."<BR/><BR/>"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."<BR/><BR/>But there's been a change in the flight plan. They've landed in Holland and there you must stay.<BR/><BR/>The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.<BR/><BR/>So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.<BR/><BR/>It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.<BR/><BR/>But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."<BR/><BR/>And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.<BR/><BR/>But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.Unknownhttps://www.blogger.com/profile/02813196194215864668noreply@blogger.comtag:blogger.com,1999:blog-8669889792701619840.post-35980206198841428292009-01-19T16:47:00.000-08:002009-01-19T16:47:00.000-08:00Dear Caroline,I can't tell you how deeply I feel f...Dear Caroline,<BR/><BR/>I can't tell you how deeply I feel for you.. sending you the warmest of thoughts and love.<BR/>Regarding being in touch with other parents of children with cerebral palsy, I really think this would be a good idea for you - I mean, you have been through a very very traumatic time and you need to have a support network set up for you and someone to listen to your heartache and worries, who truly understands and has been there, and can maybe guide you a little.<BR/>I did a quick Google search, and found this charity: http://www.scope.org.uk/ there's also http://www.mencap.org.uk and there's a whole plethora here: <BR/>http://www.disabilityuk.com/masterpages/links.htm (scroll down for all the links)<BR/>There are many other charities and organisations out there for practical help and socialising/networking, I hope you can find one that suits you.<BR/>My friend is involved with a disabled charity (Enable Ireland) for her premmie son who has had neurologial issues. They've been terrific in organising lots of therapy for him, getting him the equipment he needs and getting her on specialist courses and so on (she's just finished a speech language course paid for by them). They are also very active socially. I hope there is something comparable where you are ((hugs)).<BR/>Thinking of you Caroline,<BR/>love, SiobhanHenwenhttps://www.blogger.com/profile/08740577914911520909noreply@blogger.comtag:blogger.com,1999:blog-8669889792701619840.post-59167861819297747682009-01-16T18:08:00.000-08:002009-01-16T18:08:00.000-08:00Caroline, I feel for you so much. My heart absolut...Caroline, I feel for you so much. My heart absolutely goes out to you. Your love for your darling Seri just shines through in everything you say. You are just the most amazing Mummy.<BR/><BR/>The couple with the six-year-old: Do they have five other children to care for? Are they still reeling from a shock diagnosis? Does their little boy have several other additional medical issues? I'm not trying to be horrible, I just want you to see that you have sooooo much on your plate sweetheart. I take my hat off to you. I cannot imagine how you cope day-to-day and with no sleep too!! You well deserve to wear those Superwoman pants :)<BR/><BR/>Those toys sound lovely. You're doing such a great job stimulating her, and I'm sure it's doing her more good than you can imagine. <BR/><BR/>I see where you're coming from with the autism. I don't think you're being silly. Only time will tell, I guess :(<BR/><BR/>I wish I could take some of the pain and hurt and responsibility away. It's just not fair that you have all this to deal with. I feel like crying myself. xxx<BR/><BR/>P.S Why am I reading your blog at 2am? Lol. Love you <3Hazelhttps://www.blogger.com/profile/16894270282560207618noreply@blogger.com