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
Why I’m abandoning therapies for cuddles
At some point, towards the end of 2012, I fell into a therapy funk. I stopped doing as much physio at home as I should. I stopped giving May a spoon to hold during her meals. Stopped showing her bright lights in our darkened bathroom while she took her evening bath. It wasn’t conscious. I didn’t even realize about the spoon until someone at May’s nursery asked me about it.
“No,” I said, feeling a simple truth slip from my mouth. “I don’t do that anymore.”
But, why? Why has this happened? I think it is the surgery.
It was shock to learn that, despite everything we have done, there was nothing that really that could have been done. I am suffocating under this idea. I haven’t written as many posts because I think: what is the point any of the stuff I’ve been doing and, furthermore, of encouraging other people to do the same?
It is not enough to do more. It has to work. There is a realism there that is uncomfortable for many people to deal with. May is not like all disabled children, cognitively she doesn’t understand all the enriching activities we do with her. That is also uncomfortable to accept.
But, if it doesn’t work, it isn’t worth it. May deserves more than being stuck in the car and shuffled from expert to expert. She needs to be challenged. Yes. And we will continue to challenge her. But, not for the sake of it. It must work.
So my New Years resolution this year is not to do more, it is to do less. To spend more time reading to May, cuddling her, tickling her, singing with her and all the things she loves. And, doing less of the things that I’m not sure benefit her and do because I feel I must.
I must not.