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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- March 19, 2011 // 56 Comments
- June 21, 2013 // 45 Comments
- November 14, 2009 // 36 Comments
- November 25, 2011 // 35 Comments
- July 18, 2012 // 28 Comments
- November 6, 2012 // 27 Comments
- November 29, 2013 // 0 Comments
- November 25, 2013 // 3 Comments
- November 7, 2013 // 4 Comments
- October 23, 2013 // 12 Comments
- October 9, 2013 // 11 Comments
- By Katie B., November 26, 2013
- By Ellen Lewis, November 26, 2013
- By Madgew, November 26, 2013
- By tee, November 11, 2013
- By Alexa, November 8, 2013
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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
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Bet you didn’t know this either.
Something slipped my mind this week. Or, maybe I should say it never registered at all.
Sunday was National Cerebral Palsy Awareness Day. Yeah, I didn’t know either. I only mention it because it coincided with a couple of pretty horrific news stories. Not exactly cause for celebration.
In the first, LaKay Roberts’ mother is told by her elementary school that LaKay is forbidden to use her walker any more. You read that right. Forbidden. The mother videotaped the conversation – and it is edited, and there is definitely some animosity there between her and Special Education Director – but watch it yourself below and see what you think. I have always maintained – and said on occasion to people working with May - that it doesn’t matter what they think of me, their job is to take care of May.
In the second, Carolyn Jones discovers the beloved second child she is carrying may not live to term and, if it does, will suffer for as long as it does live. Terrible terrible news. She is already traumatized, but the State of Texas goes one further. After already enduring her sonograms, she has to have yet another – during which the fetus is described to her in-depth – and wait an agonizing 24 hours after it before she is allowed an abortion. (Read my BabyCenter post on her story.)
What is the point of a day of celebration, when people affected continue to be treated so barbarically? There has to be an entire shift in public attitude to stop these kind of things happening.
Having said that – and even though I have fought my fair share of battles – I am often surprised by the generosity of spirit that happens all the time, every day. Rather than focus on all this GRRRRRR, if a celebration is due, let it be about the every day people who help in simple ways. Here are some people we know who treat May – and everyone else they meet – with the greatest respect they can – normality:
- My nephew Connor’s school, Child’s Elementary in Ypsilanti, Michigan, where children with severe disabilities are integrated right alongside the others in the class. Or, Palmerston Primary School, in South Wales, that does the same thing. Both prove it can happen – and does - all over the world.
- Before I found our local, independently owned pharmacy, Sefgrove Chemists, I spent hours each week traveling to different pharmacies. One would stock a certain medication – and be the only one to do so – then we’d get back in the car to travel to another that stocked the other one we needed – only to arrive and find they had ordered the wrong thing. That NEVER happens now. Sefgrove even find mistakes the doctors make. Today, I happened upon a parent from May’s school there. She is not a local, but it didn’t surprise me in the least that she would travel there.
- The cafe near my house, O’Girasol, is always packed. It is the kind of place everyone goes to: elderly, babies, disabled – and those of us whose only disability is an inability to stop stuffing our faces with food. At O’Girasol no one cares when the disabled kid in the back screams with delight when his food arrives. No surprise the locals voted it their favorite business this year.
Want to become your local hero? Read my post: 5 very simple ways you can help the disabled