This past summer I took the girls on a day trip to Austin. At the end of the day we found ourselves at a park with groups of kids in day camp t-shirts all around. At some point a few girls starting paying attention to Lamp, asking quesitons….you know, the usual. Well more and more...
I’m listening to moody fall music, looking at old pictures, feeling nostalgic and missing the east coast today. I miss our old apartment and the view overlooking the Hudson river–yes that picture above was taken from our apartment window. Sometimes I can’t believe we actually lived there. Right in the city, driving up the west...
So excited to finally have this project finished, but even more excited that I really like the outcome! As you probably remember I love this house. However, one of the downsides was the lack of a separate studio/sewing space. I knew the friendship room (as PSP named it) was big enough to separate and...
Hi My name is Meagan! I am the mother to a beautiful, energetic, strong willed 3 year old little girl and the wife to a hard working hubby! In my spare time I like to train and run races. I love spending time with my little family, extended family and friends. Reese is our only...
Last Wednesday was our annual appointment in Dallas at the amazing Texas Scottish Rite. That morning while in the hotel room getting ready Lamp decided to bust out a new move. One minute she was laying down on the floor and the next minute she was sitting up. Hey, how did you get up? I asked....
We watched the full 5 seasons of Friday Night Lights this past year. In addition to being a great show, I really loved the music featured on the show. So much so that I eventually downloaded the soundtrack. One of my favorite songs from the soundtrack is Devil Town by Tony Lucca. As I’ve...
Round Top is big ya’ll. OK? We probably didn’t see a tenth of what was there. It’s huge. That’s point number one. Point number two is that while I’m grateful I got to go at all since it was a little out of the way on our way home from Dallas (another trip to Oz)...
Hey, I'm Amy!
I'm an author, artist, and disability advocate. I live with my handsome husband and three beautiful daughters in Cincinnati, Ohio.
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🙂 Made me cry. People are good and your little family is pretty terrific too.
Thanks Cass.
I am happy for you. She is a darling girl (as is her big sister), and I bet she is simply irresistible, especially now that she is old enough to chat. :> My experience has not been the same – but my child has developmental/intellectual issues, not physical ones. (And I am not uncomprehending of the difficulty of our case, and that of others in similar situations.) I wish I could believe in 99% (or even a simple majority).
Anon–
I know. I get that…and I'm sorry. I can't remember where it was that I read a woman talking about people with disabilities/handicaps and she basically said something like "Oh and heaven forbid they're mentally handicapped…then they're REALLY considered 2nd class citizens." That has stuck with me probably because I know she's right.
I hope little by little people like us–with kids who are different, mentally or physically–can help change the world and the perceptions (and misconceptions) around us. Hugs to you.
That is so sweet. She just looks like a fun little girl. My son had developmental issues and behavior problems but he had a great personality. He was over friendly as well. He would win over about anyone when he was little. As he got older that changed. Rude comments and treatment. I am so glad that you have so much positive encounters. Those little girls on the first picture were precious.
Debby–
Yes, I do worry about her as she grows older. I worry that the "precious" factor will wear off. Even as I wrote this post I thought about the fact that someday I could be writing a completely opposite post (or that she could) on her experiences a child/teenager/young adult. Right now I'm trying to focus on the real goodness that is here in the present. Thanks for your comment.
is there a difference to how you perceive other peoples' reactions to Lamp now, as opposed to when she was a non-verbal little baby? was it the same, then? or is her adorable friendliness an ice-breaker, of sorts, that helps to eliminate potential weirdness? my little guy isn't talking yet, but I do notice that when he's grinning at folks, they're more likely to say kind things, even just "hey baby!" simple little greetings. and I love that.
Well I still remember taking her out in an open and very public place for the first time. We were very nervous–I think she was just 2 months old. She was still sleeping in her stroller and was usually covered like any baby. But as she cried and woke up and we picked her up–this was in the summer and it was a hot day too–so no long sleeves, etc–and right away, the first person I still remember was this woman who was just beaming and smiling at our baby, talking to her and truly did not bat an eye. It was very encouraging for us.
Overall, I can't really remember too much how it's changed…I would say I still feel like the positivity has always far outweighed the negativity. I can remember the times where people have been rude, staring and whispering and pointing (yes, pointing and whispering on the NYC subway!!) and that was hard. And what is still occasionally hard are the comments of pity "poor thing" "I feel bad for her" (usually said by children, but sometimes adults). I knew from the beginning it wasn't going to be perfect (like any childhood) but I guess I expected it to be harder (it being how other people in public treat her) but the fact that it has actually been no-big-deal/ great has been a pleasant surprise. I will say that yes, I think her dazzling personality adds to overall kindness. Sure there are people who maybe would have reached out to her anyway, but I do think that there are people who would have just quietly and "politely" stared without saying anything until her disarming "Hi!" catches them off guard and then they just light up and are reminded, 'oh… that's right, I guess she's just a regular kid.'
I don't know if any of that made sense…I could probably analyze for hours. 🙂
this post brought tears to my eyes. I am so glad for all these positive experiences for your family. My feeling is that Lamp is changing the world – for the better.
Thanks for the reminder, Miggy. The world can be a pretty great place sometimes, and it's always good to verbally state gratitude for that. It's good for the soul, I think.
Also, you're awesome and so are your sweeties. (They're cuter than you, though, as I'm sure you already know. They're adorable!) Loves!
Yes, I am well aware that their cuteness exceeds mine!
And you are awesome too…as are your sweeties.
Thank you for this! I have a three year old daughter born with a "frontonasal dysplasia sequence" (basically a rare facial cleft affecting her nose) and a "little hand" (she has two digits on her left hand). She is cute and sweet and, like your Lamp, she is a talker. I still find myself with my guard up constantly for when I have to answer questions, give the "she was born this way just like you were born with brown hair, etc" speech, and sometimes (maybe I am not proud of this) give dirty looks to the whispered (or not whispered) rude comments. BUT you are right, more often than not she is greeted with acceptance and love. Like you mentioned, we are known at our "regular" places and people who I do not remember often remember her — let's face it, she does stand out in a crowd. I think it is because she is so cute 😉
I also want to comment on what you said about the acceptance of these times we live in. I was reading a book a while ago and, while it was fiction, it was set in ancient times and a woman had a baby with a "cat lip" (cleft lip/palate) and they were horrified by the baby and knew she would be excluded from their society and even said it would have been better had the baby been stillborn. I don't even know what to say about the sadness in that. Thank you for reminding us all of the good!
Rebecca–
It's always great to hear from people who can really relate.
I think one of the great challenges of this particular circumstance is trying to focus on the good and rise above the bad. It's hard. Like you, I've totally failed at this. But I also like to think that from time to time I've excelled and have reacted well in the face of rudeness.
And yes, I can't even imagine what life would have been like for our babies all those years ago…I'm just so glad we've come a long way as a society. Hugs to you and your sweet family!
This was so heart warming! It's nice to be reminded that people are mostly good!