tag:blogger.com,1999:blog-5236350969303953933.post3484390156027128938..comments2023-07-20T05:51:48.258-04:00Comments on Ten Squares, Three Squiggles: More Positive ExposureJessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-5236350969303953933.post-73002654724695217652009-07-02T13:32:18.024-04:002009-07-02T13:32:18.024-04:00Thank you for thinking of me. I have read this poe...Thank you for thinking of me. I have read this poem before and have not found another that strikes to the heart like this one does. I hope your friend can also connect with it. By the way, the author worked for Sesame Street and her son was the first child with DS to ever be featured on the show. She is quite the barrier-breaker! Good to hear from you and thanks again for thinking of me!Jessicahttps://www.blogger.com/profile/09568225602565669985noreply@blogger.comtag:blogger.com,1999:blog-5236350969303953933.post-41434629821181731502009-07-01T15:17:31.324-04:002009-07-01T15:17:31.324-04:00Hi Jessica-
I came across this poem recently, tho...Hi Jessica-<br /><br />I came across this poem recently, thought you might appreciate it! I thought it was so cute!<br /><br />Welcome to Holland!!<br /><br />by<br />Emily Perl Kingsley<br /><br /><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 many never be free to enjoy the very special, the very lovely things ... about Holland.<br /><br /><br />BR in Northern VABRnoreply@blogger.comtag:blogger.com,1999:blog-5236350969303953933.post-63205131371309536112009-05-07T12:59:00.000-04:002009-05-07T12:59:00.000-04:00Hi Jessica-
Thanks for your response! I will pas...Hi Jessica-<br /><br />Thanks for your response! I will pass the information along to her! Yes, they had 1 surgery to insert a shunt and are still kind of touch and go with the oxygen levels etc so once they get through the VSD hurdles (at least 1 more big surgery soon!), they can actually start enjoying their little boy/very special gift! They are definitely positive about the future like yourself and see the DS/Trisomy 21 as a way he is special versus a burden and it is nice to see all the available resources and support online and just in general! My husband went to UVA so even though my daughter is only 6, we are already having the discussion about where she will go, he is set on UVA of course and his whole family went there so I may have a tough time convincing him to even let her apply to VT lol! Keep up the positive influence on everyone who has the pleasure of stopping by your page! Thanks again for being so open about your life and Caden's situation! So encouraging! I will definitely keep on reading!<br /><br />BR in VABR in VAnoreply@blogger.comtag:blogger.com,1999:blog-5236350969303953933.post-18086769421533131812009-05-06T23:44:00.000-04:002009-05-06T23:44:00.000-04:00BR, I'm glad you mentioned that my email was no lo...BR, I'm glad you mentioned that my email was no longer up. I used to have it listed on the sidebar but the box mysteriously disappeared. I'm impressed that you are doing research for your friend. That's touching. Please let her know that she can contact me if she'd like (or you as well) at: cadenrox@yahoo.com<br />Especially tell her congratulations! She may not know it yet but she has been given an amazing gift. I once heard that getting the diagnosis was like having your heart ripped out. But then your child hands it back to you triple the size and gold-plated. I don't know what health issues the baby may be facing, I'm assuming a surgery with the VSD. I hope all goes well. Those initial hurdles are the toughest. Thanks for your kind words and I'm glad you found my blog! Oh, I must say VA Tech stole one of my younger sisters. After all those years of brainwashing to have her become a 'Hoo, she had to pick the Hokies?! It was a deep wound.Jessicahttps://www.blogger.com/profile/09568225602565669985noreply@blogger.comtag:blogger.com,1999:blog-5236350969303953933.post-1559783198445707712009-05-06T16:19:00.000-04:002009-05-06T16:19:00.000-04:00Hi Jessica-
I came across this blog when doing so...Hi Jessica-<br /><br />I came across this blog when doing some DS/Trisomy 21 research for a friend who recently gave birth to a baby with DS and VSD a few weeks ago. I have not been through what you have and have no idea what it is like. I am a mother of a 6 year old however. I just couldn't leave the site without telling you that your son is AMAZING and the cutest thing I have EVER see! If there were more people like you who would embrace the differences in people and life, the world would be a much better place! Please continue with your website and stories as I am sure they are motivational for in your situation and even for those who aren't like myself. I can't say much for your love of UVA as I went to Virginia Tech lol but you are the type of person who makes the world a better place! If we lived in your neighborhood, we would hope that we would be lucky enough to have a play date with Caden:)<br /><br />PS: Sorry I left this as a comment, I didn't see a contact section or e-mail address!<br /><br />BR in Northern VA<br />(runbre0131@gmail.com)BRnoreply@blogger.comtag:blogger.com,1999:blog-5236350969303953933.post-92145055321632617702009-04-24T08:53:00.000-04:002009-04-24T08:53:00.000-04:00I wish that all geneticists, ob's, doctors would g...I wish that all geneticists, ob's, doctors would get to meet kids, adults and families of people with Ds. I went to a presentation by Dr. Brian Skotko recently and he said he has a teenager or adult with Ds speak to each incoming class of Harvard Medical School....they talk about their lives, their interests, etc and have made lasting impressions on the soon to be doctors....just as Caden did with this geneticist.Sharonhttps://www.blogger.com/profile/17574042485403799310noreply@blogger.comtag:blogger.com,1999:blog-5236350969303953933.post-22724217616820146882009-04-23T22:38:00.000-04:002009-04-23T22:38:00.000-04:00What a great story...What a great story...Lisahttps://www.blogger.com/profile/17347490959410472081noreply@blogger.com