The first time.

I've been writing a lot of stuff. Maybe one day it could be a book, maybe one day it'll just be a bunch of things I wrote, that I hold dear to my heart. Either way, I've been writing a lot of stuff lately. 

One of the most important things that I ever wrote, was my first plea of help to the girls who are now my neighbors across the country, my friends, my team, my sisters.
I think it's important for those donating to our cause, rallying for our team, and joining our fight of awareness and acceptance to read the first thing I ever wrote. 

It's still hard for me to read it. Mostly because of hearing the urgency in my tone. That horrible feeling of, "I need answers and I need them now", and that fear, that gut-punching nauseating fear. I remember how weak I felt. How scared, alone and really, really sad. Here is that first message from March 2009:

"Hello.

I'm not sure where to start, so please excuse me if I ramble a bit. I have a million things running through my head yet can't seem to grab hold of a single one..

Here is my story, the quick version...

I'm 37 weeks pregnant. Today I had my routine weekly check-up, I had mentioned a few things I was experiencing and my doctor wanted to rule out both preeclampsia and placenta previa, so I won myself some blood work and an ultrasound.

After a day full of work-ups my doctor calls my husband and I into his office, quite bluntly he tells us something very unexpected was found on our ultrasound.

"Your baby has hydrocephalus with an apparent lumbar spinal meningocele."

He then went on to say that because it's such a rural little hospital my baby would need to be delivered someplace else.

The closest place that has a neurosurgeon (That would take the insurance-less middle-class scum that we are) is 3 hours away. which is fine, It's an amazing hospital and I if it means my son has a better chance, I'll make the drive.

My reason for writing...

My small-town doctor offered absolutely no guidance, no direction, no clarification on what my child has. Wikipedia tells me it's a form of spina bifida. A term I've heard of many times through my life, but never once in his office.

I'm going to meet with many, many new people tomorrow and I have absolutly no idea what questions I should ask, what I should do, what I should expect or where to go from here.

I'm begging for a little help. What should I be aware of? What should I know? What does this mean for my son?

Please, any help. I'm absolutely lost. and for once the Internet yields very little results."

Jason and I thought this would ruin our lives. We didn't think we were anywhere near strong enough to handle it. The truth is, we didn't change that much. We became stronger and we're happier people.

It was hard, the hardest thing we've ever done. But clinging to it and wrapping ourselves within it, becoming advocates, sharers, telling our story and raising money for the causes dearest to us is what helps us heal. It helps us move on.

Roman has a condition called Spina Bifida, and since it's never going to go away, we're never going to stop our fight.

So, THANK YOU for joining in this fight with us.

THANK YOU for seeing that there is a little known condition that needs your donations and your attention. 

THANK YOU, for being our friends, being our supporters, being there for us when the sad stuff becomes a little too much for us to bear.

Your donations, your thoughts, your support is what drives the thousands of mommies like me and the daddies like Jason to keep going. To run marathons, to have walk-a-thons, to have fundraisers. To fight for their kids...and win.

This March marks the 3 year anniversary of the day our lives changed forever. 3 years of laughter, happiness, giggles, tickling, a family growing and a family coming together. But, it also marks the 3 years of constant doctors visits. 10 surgeries, scars, wheelchairs, walkers, legs that feel no pain, toes that feel no tickle.

That's why we do this. Because it's not hard to love your child, whether he or she has Spina Bifida, freckles, or green hair. That's the easy part. Loving is always the easy part.

The hard part is getting strangers to do it, too. Getting them to love your child enough to donate money, to rethink the things they say, to feel inspired, to feel better about their battle, to feel stronger just by meeting one child.

And I think that's what we've done here. 

 

From these three tiny Potters, and their Potter parents...thank you.