WARNING: Week of surgery + 4:30am Lyla alarm since Daylight Savings Time + PMS = Emotional post.
Somehow the flood gates of mommyhood have been able to close a bit, so I’ve been getting in a little more reading lately. Love that it only takes the simple steps of cracking open your laptop, hopping onto Amazon, and clicking away on titles like Road Map To Holland: How I Found My Way Through My Son’s First Two Years With Down Syndrome, or the relatable title of The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery. Ok, now these publications were bound to be more inspirational and less scary medical talk like my first books were. Screw possible death sentences on paper, I wanted motivation on pages. Those damn “You Might Also Like” features on these websites…I ended up with 6 books in my cart. Well done marketing wizards of Amazon.
There are many life-shakers that can happen to anyone during the course of our delicate continuance. Heart attacks, car accidents, cancer, laid off. Divorce, DUI, death, dammit can’t think of another d-word. And no, I don’t want to use our D-word right now with all of these negatives. When these attention-getters take place, support groups of every kind are out there. Like our heavenly 100 Acre Wood park just around the corner, as it went unseen until we sought out the embrace of some fresh air only the way a park can provide. Support can show the new “What Am I Going To Do Now?” you, that you’re not the only one that had their Life Plan taken away. There’s a certain kind of comfort to know that someone else graduated from this same daunting challenge before you, that you’re going to get all of their old test answers to get you through it, and lastly you’re going to pass the knowledge onto a newbie through the hallways of this unfamiliar school. I’d call myself a sophomore, testing the waters of the different kinds of support that work for me. The class of Memoirs 101 has begun. I’m sliding into the wooden chair front row & center, carving Lyla Rulz into the graffiti desktop. Tales from moms on how they were told their child has Down syndrome, how they looked like hell through the first 2 months of being a first-time mom. How their houses had a toy tornado rip through and they never get to use the hair dryer either. Tales of the road to acceptance, how their world had changed for the better. I love it. Makes me feel like a part of the cool in-crowd versus the awkward new transfer student. It’s funny listening to all of these teachers (authors), in that they were previous writers or photographers seeking out a career in journalism before these special births. And you can tell. Their words flow like a calm creek through the pages, gently rolling down a slight hill that eventually falls into a collective pond to end the chapter. The colorful sunset scenes are painted through black and white text that secrete feelings of awe into my eyes. I have never been much of a reader. Hello?! A major in Engineering doesn’t scream “Yes, I would love to have that 255 page book on a boy turning into a beetle read by next Tuesday so that we can debate for 3 weeks on if it was all a dream or not.” (Can you tell The Metamorphosis was not my favorite?) I guess I was just never really a fan of fiction. Now I have stories to read that rip the still-fresh emotions straight out of my memory from when I was in that dark hospital room, stories of how it happened the exact same way to a fellow naive mom that I had never met thousands of miles away in Missoula, Montana. But through reading the first chapters of her book for 45 minutes I suddenly felt like she was my best friend for having gone through it with me?
These previous writers that I envy have stepped up their game a notch to turn their careers into best-selling books. Previous photographers now have in-home angels to capture on film that spiral their studios into fame because their heavenly images have leaked, and everyone else wants a piece of it too. Me? Have I decided to halt my career of selling pumps to hotel basements and focus my creativity on writing a blog? For now, yes. I know, nuts. But I’ve become in tune with what really matters – being the best teacher for my daughter during these first critical years and changing the cold-shoulder view on Down syndrome.
It’s pretty simple for me to do actually. Just snap my Sony at the beauty that exists in my cuddle bug and write about how appealing our life is. There’s nothing to be scared of. Nothing to look away from. Nothing you need to consider when your OB tells you there’s a chance that your unborn child may not be like everyone else.
I have to believe that our common life-shakers make us step it up a notch. Make us go from watching MTV to The Discovery Channel real quick. Really tune into what matters most in life, and you just want to tell the world “Hey, wake up! This is the stuff that really is important! Not your designer purse or the impressive car you’re envious to have. It’s just LIVING.” Some trendy folks might think I just don’t get the upscale world. No, I get it alright. The greatest pair of designer genes are right here in my lap.
Our roles in life can lie in the ascent of the mountainous challenges that we face. Real characters come out. The layers of what society wants us to be are melted away by the sweat dripping to get to the top of that peak, one flimsy overlay of makeup after another. With the climb some come out as shy, some are over-confident. Some climbers are angry and some are quiet. Jessica’s character turned out to be a voice. We always knew she was loud when she had too much wine, but this is a whole different level. Uh oh, I’m talking in the 3rd person. Time to get off my soapbox.
Point is, I can see my words in the memoirs I hold in my anxious hands. If these books can reach millions, I hope to reach even just my circle of amazing friends and family on how our world is not that different. How this is all a blessing. How my hair will never look as styled as it was 2 years ago. And how powerful it is to focus on the positive in life.
Take these words with you as we embrace this week…to fix our daughter’s heart on Wednesday. Let’s not look at this event as a curse, but a miracle of science to operate on a heart the size of a strawberry. That craftsmen out there exist to repair the blemishes that one forgets to mend while a little girl is being formed in womb. Let my beliefs of technology and spirituality blend to create a sense of healing. (This paragraph sounds like a prayer, so I will finish up with a Can I getta AMEN!?)
Here we go again with another pre-op day tomorrow (Tuesday). A little less of an ordeal than the first: a chest x-ray, blood work, EKG, physical, surgeon consult, anesthesiologist consult, surgery consult, & cardiology consult. A little less haha. But no echocardiogram + no yucky sedatives = no fussiness. Woo hoo!