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!
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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 10, 2014 // 3 Comments
- March 6, 2014 // 0 Comments
- March 3, 2014 // 2 Comments
- February 28, 2014 // 4 Comments
- February 25, 2014 // 8 Comments
- By Madgew, March 10, 2014
- By Mama Lewis, March 10, 2014
- By C Smith, March 10, 2014
- By Susan Bell, March 10, 2014
- By Mama Lewis, March 6, 2014
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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
The night we learned May’s fate, I imagined I would be incapable of feeling anything but fear and anxiety for the rest of my days. I struggled to speak. I found it difficult to articulate anything, but repeated over and over to my husband, “I don’t want to feel like this. Tell me I won’t feel like this forever.”
It was sometime in the second week, when we were given the news. I remember the room as dark and low-lit as if everything glowed in a jaundiced yellow – but that can’t be true. The lights would have been dimmed, but the machines also had their own lights and blinking readouts. My memory must have corrupted the event.
It was all an accident anyway. We asked if the MRI test results had come back because if they had, we there was a big meeting the following day about them. A female doctor, in her 40s with cropped, ashen hair glanced down at May’s chart and said flippantly, “Well, of course you know about the brain damage, but…”
Did she continue? I just remember the wave of nausea and utter despair that flooded me. It surged up through my stomach and throughout my whole body. I physically ached with the magnitude of her passing comment. I looked up at my husband and saw that he had heard it too, and that was how I knew it was real.
It was after 10 pm; there was no specialist neurologist to speak to us in detail about the MRI. There was just this ominous statement and the achingly long wait until the following morning when the head of the unit gathered us into her office and relayed the news again.
That night was the worst night of my life. That isn’t an understatement. I never thought I would ever feel joy again. One second I was a mother with a sick child. The next, my life was over.
But, the worst night of my life ended. It led into some of the most challenging and miserable weeks I have ever experienced. But, they ended too. The oft-used phrase, ”This too shall pass,” was not only fitting, but actually did comfort me.
It is five months later. Nothing we have experienced directly with May compares to that night. May is the exact opposite of everything that night was. If I write about it now, it is only to highlight this. If I had known then, that the pleasure of raising May would out way the fear I had for her future, it would have been a gift. I hope someone experiencing something similar will read this, and maybe they will see some hope.