Today, the Punkymoms site published a piece on us!
My first experience with them was a playdate with the Dallas group in 2002, when I had two kids: a pre-schooler and a toddler. It was cold, windy and the park was loaded with other folks who looked like me. The next almost two years was spent attending coffees, learning to trust this group of people, and realizing it was both easy and worth it.
As the board grew from local to national, my family grew too. On a rainy January day when the sonographer simply wrote "massive hydrocephalus" on a piece of paper, I knew where to go: the Punkies. That night was immeasurably gut-wrenching. I learned about Dr. Google, and was reminded to trust my gut, which might well be the unspoken mantra of Punkymoms. I got honest "Hey this doesn't look good at all, but you can walk through this" feedback from the boards, which happens to be exactly what I needed.
Finding truth is rare.
The next day, the doctors at a high-risk sono clinic confirmed my fears: my kid had Spina Bifida at a fairly high level on his body, and would "almost definitely not walk. In fact, we can't rule out brain damage from the amount of fluid on his brain."
"I'm having a boy?!" I asked.
The doctor looked perplexed, so I told him about the evil unsmiling sonographer from the day before. He had only told me about the abnormalities, completely ignoring the one commonality for which I had the sono in the first place: I wanted to know what gender my kid was.
Side note: this was before I became far more aware of intersex kids, transgender kids and the medical profession's apparent need to pidgeonhole societal norms.
What I do know is that I found joy from other parents that day: bad doctor jokes and the reminder that all kids, disabled or not, look like aliens on sonograms. A decade later, I try to give back the humor, life experience and support I received, usually on an individual basis. The experience was the beginning of being humbled, and it happens daily. That's fine with me.
Look for the commonalities.
Monday, August 17, 2015
Sunday, August 16, 2015
First, here are links to how we are funding this SuperVan:
We're a family of five: two parents, three kids (and a mean cat.) One of the kids is Mr. Charming, AKA "#3", who is paralyzed, has epilepsy, is nonverbal, uses a pop-top feeding tube button thingy. Kids #1 and #2 are teens, and they also come with their own set of accessories, namely skateboards, musical instruments and backpacks full of books.
Or something. Frankly, I (Mom) am afraid to look in there, because small pieces of tech attack me when I do. DS3's hurt, but not nearly as much as a set of what appears to be spring-loaded ear buds.
I digress: we've been cramming all of us in a small SUV for three years now, and it's time to get a new-to-us minivan wit all the bells and whistles. If you travel with a disabled person and wheelchair, those "bells and whistles" are the basic necessities of a ramp and tie-downs.
Repeated lifting of humans and oddly-shaped durable medical equipment simply results in back strain (and complaining teens. You choose which is worse, but I'm going with sciatica. Trust me.) So here we are, telling our true tales, informing you, and yes...crowd-funding a van.