Sunday, November 16, 2008
So who is reading?
The girls and I are very curious as to who is reading this blog and why. We suspect most are coming over from the brain surgery group, but we're curious none-the-less. Go to the comments and take a minute to tell us who you are, whyyou keep up with us, and maybe what you enjoy. We're definitely wanting to hear from the people in other countries - I speak a little German, and lived there when I was a kid, so I'm thrilled to see it on my map. Thanks for tuning in.
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13 comments:
Hi--I began reading your blog after you left a comment on my blog at http://www.colbylobrien.wordpress.com on an entry about my daughter with hand deformity learning to play the piano. I have enjoyed reading your site ever since and getting to know your family. I am from Kansas and usually read your site on Google Reader.
Lois
My name is Kerri..
I live in central Illinois. My niece has slow progressing R.E.. she's much older, 13. and I'm afraid the hemi window is closing for her.
I caught the link to your blog from Jessie's blog..
And a big part of what kept me coming back, was your writing skills.. Sometimes you crack me up. You even have me trying my hand a blogging..
More importantly, I like to keep up on the kids that have had the hemispherectomy (did I spell that right. there is no spell check here)..
My sister is not very open about my nieces R.E., and sometimes the only info I get is on-line.
So thanks for sharing your story, and letting the rest of the world peek in once in a while..
Thanks Kerri, Is your sister part of our yahoo group? We are very supportive - there is a boy in our city whose family decided not to have the surgery. I'm afraid the outcome is mostly the same though - without as much recovery time while growing. It is a terrifying decision to make. She can always email me.
Hi You, You know we're always reading it, but I thought that I would remind you so you don't think that you can get away with anything. ;-)
We're glad Blondie's cast is off. Keep up the good work kid!
Cris and Kristi
HI! I'm here, Theresa from Alaska.I'm here because you leave such nice comments on my blog (LOL!) and I used to be a middle school math and science teacher, so I feel a little kinship there.
Hi Guys,
Just me, Aunt Teresa. Found this to be a good way to keep up with the crew and all that's happenings.
Glad to see the cast is off. E-mail me and let me know what you want to bring to Thanksgiving dinner. See you soon!
Thank you Kelly..
I had emailed Cris and Kristi just before Jessie's surgery.. Cris was kind enough to offer all of his contact information for me to give my sister.. I don't believe she ever called him.. And probably if she knew I was even talking to anyone about her daughter, she would be upset..
I think part of her hopes that there has been a misdiagnosis..
I know more about Blondie and Jessie than I do my own niece.. Which is why I follow so close.. Strange how complete strangers make me feel more connected to my own family..
I speculate that since most hemi patients are so much younger than my niece, my sister doesn't feel like 'one of the gang' so to speak.. I'd love to get more involved.. Maybe look at some ways to bring the hemi foundation to Illinois..
Hi: I just came to your blog because I noticed a new "Lexington Blogosphere" link on my Live Traffic Feed on my blog. I live in Lexington, SC, and began blogging to build my home studio/embroidery business but found that I have had such a blast making friends and learning new sewing and craft skills. I hope your daughter is doing well. I'll have to read more of your blog now.
Hi!
My name is Julia. I have come across your website as a result of gabrielle's and jessies websites. My son was born with cortical dysplasia and has had two surgeries to remove his right frontal lobe. We have now been seizure free for over two years following his last surgery in 2006. He continues to progress nicely but I am always interested in seeing how other children are doing and finding any information that I can that might help my own!
Hi, my name is Jane and i live in Birmingham, England - so probably add to the flag selection when i log on!
I found your blog about a year ago when i joined the hemi yahoo group, and check back on and off, usually reading all the posts i've missed since i was last on!
I was an au-pair for 2 years, in chicago, for a wonderful boy who had a hemispherectomy at 18 months and i go back to visit as often as possible, and your blog has been great for offering ideas and support.... particularly with your videos - seeing your daughter swim has helped me ernormously in teaching George, who is now 11, how to swim.
I am training to be a Conductor for Conductive Education (an educational approach to teaching people with motor disorders how to deal with and overcome their movement problems) which George benefited greatly from and your 'therapy' pictures and info are also great for giving me ideas!
Jane.
I just wanted to thank you for your kind words.
I think u invited me to read from the yahoo group, i read becasue i like to see how your family is doing and how life is after surgery
My name is Julia. I teach public Pre-K in Canton, Texas. I started reading your blog this summer as a link off of Jessie’s. I have four children in my class who are mainstreamed through a PPCD special ed. classroom. My initial goal was to gain some insight and understanding into the kinds of emotions and experiences that their families had been through prior to arriving in my class. As a regular ed. teacher, I don’t really get a chance to know the families as much as I would like. There is an initial introduction and quick overview at the ARD meeting and then information communicated through the special ed. teacher or aide. I started reading because I wanted to see things from the other side of the ARD table.
I have kept reading because I feel like I can relate you as a teacher/mommy and because you inspire me - to be a better teacher and to be a better mom. I love reading about your family’s adventures!
Before I end, I want to share with you an example of how your words have had a ripple effect that has reached way out to East Texas. Recently, I sent home report cards with my students – much like you do. My class is a very hands-on, developmentally appropriate pre-k program, yet in comparison to many, it is VERY academic because our kindergarten program is very academic. My heart ached as I filled out one little PPCD guy’s report card because it only told what he couldn’t do – not what he could do. I though of your family – and so many others, and I tried to think of a way to let his parents know that even if he didn’t know his colors or letter names, that he HAD learned a lot this year – and most of all that he brought me great joy every day. On the day of report cards and our awards ceremonies, the idea and inspiration hit me. This little guy walked in, opened his backpack, pulled out his folder, grabbed his homework sheet out of his folder and started across the room. The aide almost stopped him because we just weren’t sure where he was going with that paper, but then we both watched – mouths open in amazement and joy – as he trotted over to my chair and drop his paper down with all the other homework papers then came back to put away his folder – all by himself. He had never done all of those steps before – all by himself – without prompting. Not a big deal to some, but to us – it was HUGE. Later that day, I had a chance to type his parents a quick note describing that incident and how much their child had grown this year in-spite of what the report card said. I didn’t hear back from them for several days. When I saw his mom at the Thanksgiving feast, she shared with me how much my words had touched her, her husband, and their whole extended family. It seemed “the letter” (as they all called it) had been passed around during a family gathering and read over long distance phone lines – over and over. It brought tears of joy and encouragement to a family who faced negative news about their son over and over again.
So, I want to say, “Thank you to YOU” for teaching me to be compassionate. Thank you for giving me the kind of insight and understanding that enabled me to touch the lives of this family. Without having seen things from your side of the ARD table, I might never have known how important those few words could be. You must be an awesome teacher in the classroom because you have taught me so much just by sharing your family's story through this blog! Thank you!
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