Stacie Lewis’ experience raising hell…
... erm, raising a little girl with severe brain damage. The blog began in 2009 when May was 4 1/2 months old.
Currently, May enjoys bouncing and the dulcet tones of dub step.
Click on May's photo here to link to her best bits, including videos!
Email her or her mama at: firstname.lastname@example.org
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May in the news!
- March 19, 2011 // 56 Comments
- June 21, 2013 // 45 Comments
- November 25, 2011 // 37 Comments
- November 14, 2009 // 36 Comments
- July 18, 2012 // 28 Comments
- November 6, 2012 // 27 Comments
- April 23, 2014 // 1 Comment
- April 22, 2014 // 0 Comments
- April 18, 2014 // 4 Comments
- April 16, 2014 // 3 Comments
- April 15, 2014 // 3 Comments
- By Adrianne, April 23, 2014
- By Mama Lewis, April 22, 2014
- By Ellen S., April 21, 2014
- By Mama Lewis, April 19, 2014
- By Scott, April 19, 2014
Don’t understand a term?Click here: TO SEE MY GLOSSARY!
Posts about May on BabyCenter!
A bit of praise but is it art? CP Info Dealing with Doctors Fun with May Giveaway Hip surgery Hot Air Ieuan Kids all access... London Leukemia Life with a CP Baby Lycra (Supergirl) Suit May vs The Hospital May's History Medical Records Music Not special needs. More like NEED IT. Nursery Physio Potty Training Preschool Seizures Sleep So-called experts Success! This week I'm... Transportation Visual Impairment
I think I’m a bit of a hypocrite
Ever since I started writing on Mama Lewis, I’ve begged people to treat me no different because I am the parent of a disabled child. It hasn’t worked. I didn’t expect it would, but I tried anyway. There are still people who write in to me on a regular basis who I’m sure do it because they feel it is a public service. And, of course, there are very few people who write in to tell me they are insulted or horrified by anything I say.
Either everything I write, all my opinions – even all my photos – are wonderful, or people feel too uncomfortable to tell me that what they really think. My family doesn’t have the same reserve, so I am well aware that I can be offensive and disagreeable. And, frankly that’s how I like it. This blog is not a fishing expedition. I wish more people would tell me what they think. I find criticism far more useful, than flowery pity.
So, here’s the hypocrite bit.
The other week I wrote a post called Santa’s recruiting cute toddlers on BabyCenter where I showcased a family holiday video from The Sphors are Multiplying family blog. To be honest, though I didn’t say so in the post, I found it nauseating. However, I also thought it would appeal to BabyCenter readers. The post didn’t do too well. I blame myself and the manner I showcased it, not the video itself.
Usually, I read up in detail on anything I post. If it is a news story, I read the research that underpins it. Or, if it is the personal story of a family, I read their web site first. Like in this case, expect in this case I didn’t.
If you haven’t watched the video yet, this is the point where you should before you read any further.
If I had, I would have read that the toddler in the video is this family’s second child. Their first daughter, Maddie, was born prematurely and then, a year and a half later, died from a severe respiratory infection.
When I read that, I felt terrible. I realized that, viewed in that light, their video no longer appeared sacchrine to me. I can understand the desire to scream out to the masses that a healthy, happy child is a cause to celebrate every day. I can understand every impulse to do so in the loudest and silliest of manners. I can understand because that is exactly how I feel about Ieuan.
Even though I didn’t write a negative piece, I didn’t write it with any consideration to the context and I felt awful. I wondered if I should apologize, rewrite it – I spent a couple of days wondering what to do. Me. The same person that wants her readers to treat her no differently.
I decided the best thing was to change nothing. On my blog, I ask people to take me at my word and understand that I am more than how May’s disabilities have shaped me. Either I accept that some people will not appreciate my work – whether it is offensive, or saccharine – or I cater to people’s desire to pity me.
I can’t help but see the video differently when I know the context. I certainly appreciate it more. But, I can’t say I love it. I still can’t get that song out of my head.
What about you? Did you feel differently about the video after you read the back story?