Dear Spina Bifida, fuck you.

You are dirty.
You are mean.
You prey on small children.
You create worry. Doubt. Stress. Tears.
You disable.
You feed prejudism and bullying.
You make me blind to good, forgetful of His promises.
You create a need to isolate.
For all of these things, I more than hate you, I loathe you.

Today Dollie Mae is 3 months old and instead of spending her day picking out her cutest bow and throwing her 3 month sticker on her chest, she is getting an IV. Instead of talking about her milestones, i’m kissing away her tears and singing trying to soothe her terrified little self. Instead of napping in a baby carrier on my chest where she smells me and hears my heart, she’s asleep on a Nuclear Medicine table where they’re testing her kidneys.... to see if they work properly. To rule out another surgery.

She is my hero.

Spina Bifida my enemy. She will beat you down. I will help her.
#NationalSpinaBifidaAwarenessMonth how it REALLY makes you feel.

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so... about me.

I have been lost. In adulthood. In wife life. In motherhood. Where did I go? Me... Emily. The photo junkie, jewelry artist, music loving, traveling fool. What happened to date nights, or even late nights? Slow dancing to Billie Holiday with a bottle of red while fish tacos cook in the kitchen. I day dream of Costa Rica and shopping sprees, sleeping in with my handsome man next to me and having coffee in bed. Let's talk self care. It used to mean pedicures and massages, a weekend getaway or a girls night. It's no secret that life is hard and somewhere in the midst I've lost myself. I have forgotten who i am aside from being a wife, a mom, a friend, a daughter. I don't get my hair done or my nails. I would die for a massage or just a fancy bath where I could soak as long as I want. I could use a few strokes of mascara and could totally benefit from some whitening strips. I didn't realize I had abandoned not just these superficial things but also TRULY carin...

the Story.

As I sit in this hospital room listening to the clicking of the IV fluids and a sweet little teeny tiny baby snore, I endulge myself with a 16oz mocha and a chocolate chip muffin and think two things: Dollie is the toughest person I have ever met and this shiz has been hard. Yesterday at 8:00 am central time Dahlia underwent a 4 hour surgery to repair her grade 4 hydronephrosis of her left kidney and to release both of her Achilles’ tendons in her tiny baby feet. At 20 weeks pregnant I went in to Dr. Brody’s office for what I thought was a typical ultrasound. It was me and Brooks and it turned out it was my 20 week anatomy scan. As Robin scanned me she noticed that the baby’s left kidney was dilated but assured me that it sometimes happens and not to freak out. She continued to scan that baby and as she got to the brain she grew more quiet than normal. At that time Dr. Brody popped in and looked at the screen and I could see with the exchange of looks that something was wron...

dark as night.

Today feels blah. I am sad... tired... alone... depressed. It feels like I have noone to call, noone who understands and honestly I think my support system is just tired also. Supporting someone who is struggling is hard. There is so much encouraging, inviting and loving that goes into supporting a friend who's in a tough spot. It gets old... always having to reach out and check in. Always having to be the one to sprinkle some positivity, it can wear anyone out. Lately it has felt like a dark cloud is following me around. It feels like the enemy is constantly feeding me lies about myself and who I am. I feel distant from God, I am struggling to hear Him. I long for old relationships with friends and family. I miss playdates, jokes, getting a beer. I miss going shopping with my mom. I miss alone time with my husband. I miss My Morning Jacket. I want a weekend getaway. I'm worried. We have 9 days until Dollie's next surgery. It is on her clubfeet...

This Life as I see it

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