When I see
THIS...
It's hard to remember THIS...
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It's been nearly 4 months since my angel-bear underwent his Hemispherotomy and if you had told me then about the way he'd be now, I wouldn't have believed you...in fact the Doctors did tell us...and I didn't believe it. I mean, I know I described to people the results we were told we'd see and spoke confidently about it, but following surgery, I must confess, I lost faith...at least in the time frame of these great results.
Yet, here is my son: smiling,
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| laughing |
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| holding his own bottle |
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| talking baby jabber all day |
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| riding in the shopping cart |
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| paying attention at Story time |
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| getting excited because Daddy's home |
and rocking new teeth every other day, it seems.
When I see all these really amazing things he's doing, I just forget about the past. I forget he ever had seizures. I forget we spent weeks in the hospital, and I forget that he had his head sliced open and that half of his little brain is permanently snoozing. None of that feels real any more.
I was going through old pictures of the dark days and I felt nothing. The images that once terrified me had absolutely no affect on my emotional state because as the sad little broken baby on the screen stared up at me, the hilarious, happy, drooling baby on the floor looked up at me as well...and he let out a snorting giggle that told me: "Mom, I'm cool. Everything is chill here, now, so we don't have to feel sad. Let's party! Also, I just pooped."
So I'm glad I did follow through and start this blog shortly after the badness, because if I tried to write descriptively about my feelings then, now, it would be feeble and dimensionless at best. I can't remember how it felt then, and I don't wish to. I am so enormously blissful with my sweet baby man to play with every day. He is a champ, a superstar, an amazing, resilient, and silly guy and I'm so proud of the endurance he's shown as well as the hard work he's done to regain what he'd lost.
Rowan Edward, you are my everything and everything you do astounds me. You can do ANYTHING...and with only half a brain! Thank you for being my baby, you wonderful boy. I love you so.
(p.s. Row's on the floor at this very moment...and he just farted...comedy is all about...timing)
I feel like so many prayers have been answered! We are rejoicing that he was given a second chance for a normal life. Gotta love the Pediatric Neurology doctors in the epilepsy center at the St. Louis Children's Hospital.
ReplyDeleteNikki: your words are so inspiring and a testament to God's goodness and you and your husband's fortitude. You have been blessed with this special wonderful child, who just happens to have epilepsy. The following showed up in a Dear Ann Landers column and it has always given me comfort.
ReplyDeleteWELCOME TO HOLLAND
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It's like this ...
When you're going to have a baby, it's like planning a fabulous vacation trip -- to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo's "David." The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes and says, "Welcome to Holland."
"Holland?!" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Take care of you :-)