There are some motherhood "rites of passage" that I've wanted since before I was a mom. There were also some things I didn't realize I wanted until I couldn't have them. When we decided to pursue fetal surgery, my opportunities for some true motherhood experiences went out the window. For example, I'll never know 40 weeks of pregnancy. I'll never know labor. Contractions? What are those? I know that most people who have experienced pregnancy and labor would tell me to put these things in the category of "Stupidest things I ever wanted." But since my perspective is a 6-week premature baby, a 3-week nicu stay, 4 months of portable oxygen, 2 c-sections, and a limited number of children I can birth...sometimes I can't help but wish I had those stupid things in my life.
The grass is always greener, I guess.
Being independent, pulling bowls out of kitchen cupboards, dumping toy boxes, breastfeeding, messy self-feeding... When Evan didn't do these things I tried to convince myself that they were stupid things to want. I've tried to be grateful for everything Evan does. But really, I laugh when Seth opens the cupboards and pulls out the pot lids and throws them around the kitchen floor. I take pictures as he rips all the books off the shelf less than ten seconds after I picked them all up. I'm proud when he ravages through the toy box to find something to play with. These are legit motherhood experiences that I hadn't had before, and I'm finding joy in the many things Seth is able to do.
Someone just created a graphic for Spina Bifida awareness month (October) that says, "Our house is Spina Bifida strong." Although many of the experiences I've had with Seth have been easier and maybe more enjoyable than the experiences of raising a child with Spina Bifida, our family would not have the strength, bond, love, unity, and understanding that we have, without Evan. He is such a blessing! He makes me laugh, he makes me think, he questions me, he questions me again, he drives me crazy, and then he softens my heart and teaches me about patience, love, innocence, joy, priorities. At times I wish I could trade Evan's experiences for easier ones, but I wouldn't ever give up who we've been able to become through the harder experiences. Maybe Spina Bifida is the stupidest thing I've ever wanted, but I know we wouldn't be the same without it, so today I'm grateful.
In one month we are participating in our 2nd Walk-n-Roll for Spina Bifida! Last time Evan had his nifty silver walker. This time he'll be walking independently, and probably even running part of the course. All of the funds raised will go to the Spina Bifida Association, including money for our local chapter to host socials where Evan gets to meet other people who have Spina Bifida, shunts, braces. That's starting to mean something to him, though he still doesn't quite get why Seth doesn't have a shunt...
If you want, you can donate to this great group. And if you're local and want to join us on November 5th in Walnut Creek, register and make sure to choose Evan's team which he appropriately named, "Go Spina Bifida!"
Here's the link: Walk-n-Roll for Spina Bifida