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
- March 6, 2014 // 0 Comments
- March 3, 2014 // 2 Comments
- February 28, 2014 // 4 Comments
- February 25, 2014 // 8 Comments
- February 17, 2014 // 2 Comments
- By Mama Lewis, March 6, 2014
- By Zvon, March 6, 2014
- By Rv, March 4, 2014
- By Mama Lewis, March 4, 2014
- By Claire Stockton, March 4, 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 you haven’t heard from me…
Sometimes life with May is no picnic. This week has been a crashing disaster. I’ve been reticent to write about just how awful it has been because I don’t want the other special needs parents who read my blog to think life is a misery. And I don’t want to rehash it in a flood of phone calls from concerned family and friends (who I love, so thank you anyway).
First of all, we have no clue what is wrong with May. Which is what everyone wants to know. We’d like some insight ourselves. Because if she could tell us, we could fix it – or help or something.
That’s the trouble with May. We never know. When she goes into these marathon sessions of pain and fevers and fits, I don’t even know for certain she will pull out again. Instead, I am literally inches from her while she screams every waking moment – now going on five days – and all the while the dishes pile up, cartons of Chinese food litter the kitchen and my schoolbooks sit in front of me never marked. In between worrying over how I will ever complete anything again because May refuses to let me put her down, I wonder if this day is going to be the day that she never comes back to us.
I miss my May-May so much.
Sometimes, she falls asleep and that is bliss. Because while she is asleep, she isn’t in pain. When she is awake we have to contain her heavy frame while she thrusts and heaves under the agony of whatever is punishing her. She chokes and sputters and finally vomits out the one thing that does help her, some liquid pain relief. And then she screams some more, all the while kicking out and thrashing her body. She has only consumed half her seizure medicine, so her seizures are more frequent as well. My body is bruised, my back is in agony and my arms are strained with lines of burst blood vessels.
So, I’m exhausted and terrified. Not a great combination. When my lovely 15-year old bottom set girls asked me if May was better yesterday morning, I said, “No.” And, then one quietly asked me what an adult never would: “Is she getting worse?” And, I found myself choking back the words, “Yes.” I shuffled out of my classroom before I broke down in front of them.
Is she getting worse? We won’t know until she gets better. If it is her hips – dislocated 50% let’s not forget – causing her pain, then hopefully her surgery in a few weeks will fix that. But, we aren’t certain that’s it. It could be that. It could be a virus. Or, a tummy bug. Or, any number of things.
It is agony for us as well.
And that, my friends and family, is why you haven’t heard from me in awhile.
PHOTO: This was taken accidentally on a trip to a petting farm last weekend. I don’t go out of my way to take photographs of my child in pain, but as long as I had it, I thought it might go some way to explain how May has felt this week. (Don’t reuse it. Copyright: Stacie Lewis, 2013)