She Woke Up for Me 17 Years Ago. So I Do This for Her Every Day.
Seventeen-ish years ago, my daughter, Taylor, was born a healthy, typical, thriving baby girl. Three days later, she was dying. Her tiny body was lifeless, covered in tubes and wires. The doctors discovered she had meningitis that was caused by Group B Strep, a rare and preventable infection she contracted during birth. From me. Her mom. The one who was supposed to protect her.
Days went by and not much changed. Machines beeped, IVs dripped and the air pumped into her lungs. I read her stories, sang songs and watched the numbers on the monitors methodically tick up and down. Then the day came that the doctors wanted to have a meeting.
“Things are not improving,” they said. “It’s coming close to a time when you are going to have to make a choice.”
A choice for what? I didn’t understand. I crawled onto my mom’s lap and wept. How was this happening? I was only 17 myself; how was I supposed to make a decision for my tiny baby to live or die?
Luckily, I never had to. Later that night, Taylor coughed the breathing tube out of place on her own. Nurses and doctors rushed in as we were rushed out. What seemed like an eternity passed before the ICU doctor came to find us.
“The tube is out. She’s breathing on her own.”
I think I sprinted back to her bedside and there she was, propped up by a nurse’s hand getting a breathing treatment to clear her lungs. The way the mist was falling around her. She looked like an angel on a cloud, and for a brief second, she opened her eyes. To this day I will swear to you she winked at me.
She woke up for me that night. So I live every day for her. That’s the deal.
Things got better after that. Finally we had hope.
Life for Taylor will never be easy. The meningitis killed over 80 percent of her brain. She has since been diagnosed with spastic quadriplegic cerebral palsy, scoliosis, severe developmental delays, is nonverbal and blah blah blah…
She has had more surgeries than years on earth, but every time she bounces back stronger and happier. And her smile… her smile and her zest for life is infectious!
Sure, I have my days when I just want to lock myself in a room or scream at the top of my lungs or sob uncontrollably into a puddle of mush. And sometimes I do. But then I remember back to that day almost 17 years ago when she winked at me and I get up, brush myself off and keep it moving, because Taylor doesn’t need that. She deserves better. She is my life now and she needs ME. She doesn’t need a pile of mush on the floor. She needs a fighter, she needs an advocate, she needs a friend and sometimes she needs someone to be a stone cold b*tch!
Most importantly, she needs her mom. And I’m going to be there, every day, for the rest of my life. Not a day goes by that I don’t worry myself sick over her health or our future or over-analyze how I would singlehandedly try to rescue Taylor from a burning building, sinking ship or collapsed bridge (not exaggerating). But I’ll figure it out. Always have, always will.
Over the years of being Taylor’s mom, I’ve been called a lot of things. Angel, special, warrior, strong… you get the drift. Typically I just smile and nod or respond with, “I’m not doing anything you wouldn’t do yourself.” Parents in general tend to sell themselves short. I guess my point in all of this is to say that, as parents of special needs children, we aren’t better, stronger, smarter or any other comparison to be made with parents of “typical” children. We are just lucky. Lucky enough to have witnessed the miracle of a child with the will and determination that gives us very little room for error. My point is, our strength and will comes from our children.
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