Tuesday, November 1, 2011

Dear Spina Bifida.

Dear Spina Bifida,

I still remember that March day, when you tricked us.  I can't believe how naive I was, I thought maybe my fluid was low or maybe Roman was getting too big. I never thought it could be bad news. I never thought it could be you.
I still hate you. I hate you every single day. My eyes sting when I think about how hard you have made things for my son, but they burn when I think about the struggles ahead.

Can you tell me if he'll ever walk? Can you tell me if he'll have kidney failure? Shunt failure? How many more surgeries will I need to sign off on? You put my child through hell, which in turn puts me through hell and then you offer no explanation, no time line, no warning. You lie dormant until we start to feel normal, until we establish a routine and then you come out of hiding and punch us.

Mothers are naturally wired to feel guilt. We always feel like we could have done more or said more. We replay situations wishing we could word something differently or handle a situation with more kindness or patience. In addition to everything else, you have riddled me with mommy guilt. You lurk behind every smile, every laugh. You sit as a gentle reminder; My son can't walk.

The lucky moms get to go to sleep at night feeling the pangs of mommy guilt caused from being too short with their children, not getting home in time to say goodnight or flushing the fish they forgot to feed. The unluckiest end their evening wondering what they did to cause this. Was it something I ate? Something I didn't eat? Did I take any medicine I shouldn't have? Did I skip a prenatal?

You stormed into our lives like a tornado and an earthquake all at once, an unstoppable force of nature. My brain was swirling with cloudy information while I was being whisked from one doctor appointment to the next. My whole body trembled with fear, when it should have been shaking with excitement.
You robbed me of that joy. I should have been excited. I should have been celebrating. I should have been happy. You stole it all. I wanted to be happy for my son, I wanted to explode with joy when introducing him to his big sister. I wanted to be able to brag about what a good eater or great sleeper he was. These chances were stolen by a brain malformation and snatched by apnea.

What I didn't know and what I didn't expect was that we would, eventually, be happy again. And not that "I'm settling" kind of happy, but the kind of happy that I had always hoped for. The rolling on the floor, face full of whipped cream, hot cocoa with a million marshmallows, wheezy laughing, dancing at noon, staying up late, extra scoop of ice cream, doggypile on the couch for movie night kind of happy. That swells in your chest, sore cheeks from smiling, sleep in on the weekend, nothing to do and nowhere to be kind of happy. The first day of school, first best friend and first sleepover happy. The splashing in the pool, rolling in the leaves and making snow angels happy.  The sharing big sister, first step in your walker, help feed your little brother kind of happy. Our happy.

You rerouted our lives, and stupidly I thought that was a bad thing. You can make things harder and you can make things sad and you can dump a world of hurt on us. You can mar some memories, you can hurt, sting, and scar but you will not take our happiness. You will not defile our dreams, you will not separate us or steal the things that make us family.
You can do a lot of things, but you can't do that. The saying "What doesn't kill us makes us stronger" really does apply and hold true. We win.

I still hate your filthy, stinking guts, though.


  1. Awesome.....so proud of this letter!!!! :) I like this so much!

  2. I straight up love you. Nice entry. Very nice, Party Pants.

  3. Love the letter.
    Nice to know I'm not the only one - start to finish!

  4. Thank you. You're a hundred percent right. SB can't take the happiness. You just don't let it.

  5. Love the letter. Love your blog!