Tuesday, August 13, 2013

My Fancy Schmancy ABC's - An Alphabet for Your Girly Girl

Copyright Sweet Leigh Mama 2013 *All Rights Reserved*

The Aftermath of a Baby Born with Birth Defects

It's been about 2 years since I've blogged regularly. WOW. That is hard to believe! So why did I stop? The answer is a bit convoluted, but hopefully you can follow...

Let's just say things got a bit too real for ole' Sweet Leigh Mama.

After Deacon was born with his condition - Craniosynostosis - I became consumed with making sure he was ok and planning his surgery. After his surgery, there was his recovery to focus on. I somehow brought myself to chronicle all of this in a series of posts you can read here: http://sweetleighmama.blogspot.com/p/our-journey-into-craniosynostosis.html

And then, to be completely honest, it was hard for me to "find the funny" anymore. I found it near impossible to express myself in regards to my emotions regarding Deacon's surgery. Me - the woman who could talk about anything, for hours on end - was speechless. The person with the loudest laugh in the world couldn't find much to laugh about. And because I didn't know how to express my emotions, I felt like I couldn't blog. It didn't feel authentic to talk about every day life, but not address the giant 500-lb gorilla in the room. Becoming a mom is life changing. Becoming a mom to a baby with a severe birth defect is a double whammy.


The truth is, I feel like the first Deacon died. There... I finally said it. Out loud. To the world. I feel like one baby went into surgery, and a new baby came out. Mentally, I know this isn't true. Obvi. But I was not mentally or emotionally prepared for the extreme difference of the "before" and "after". And it wasn't just his physical appearance that changed. EVERYTHING about my baby boy changed. From the way he looked at me, to the way he moved, to the way he ate, played, slept, acted and reacted. Everything was different. Dramatically different. Dramatically IMPROVED. Because now his brain wasn't compressed. Blood flow was better. He didn't have a constant headache. And don't get me wrong. I was SO EXCITED about these improvements. Deacon was (and still is!) doing AMAZING! And while I couldn't get enough of my cuddly, snuggly baby boy with the perfectly round head and alert eyes, part of my heart "missed" my original baby. Part of me was grieving for him. My little man with the bumpy head and the distant eyes. And my heart still aches for him. The "First Deacon". But that doesn't mean my heart isn't filled to the brim with love for the new and improved Deacon : ). He and Paige are my EVERYTHING! I am so proud to be their mama. They are cute and sweet and tough little boogers. But here's the thing: the change from the "before" to the "after" was just so sudden and so dramatic, my heart is still catching up with my brain. Yes, two years later. Deacon just turned 2! It's hard to believe how fast time has gone by.

I went to a therapist for a bit and she said it's a lot like Post Traumatic Stress Disorder (PTSD). Mentally you know something to be true, but the emotions of the experience cloud your thinking. I don't know if this is something all parents of children with reversible birth defects face. Or if it's exclusive to Craniosynostosis repair. Or possibly just exclusive to me. I don't know. Which is one (of the many) reasons I avoided writing about it. Because I didn't want to sound crazy. But I felt the time was right to put this out there. Out into the world. Just in case there is another mama feeling this exact same way, and reading this would help her know she isn't alone.

So now - 2 years later - I'm starting to come back out of my shell. To reenter the world. Writing a children's book with my parents (soon to be published!), creating and selling art in my Etsy store, and moving full steam ahead with my freelance PR business has helped remind me about life, and how it feels to live it.

Hopefully I will start blogging again, because I miss it like crazy. Stick with me, Mamas. I'll be back : ) In the meantime, here are some updated photos of the fam!