During my second stint at TIRR, my therapists were doing everything they could to prepare me to return to my crazy little (then) 3 year old and 6 year old boys. They called in a former TIRR patient who, aside from being on the wheelchair rugby team and doing marathons on his hand cycle, was also a dad. He told me some great stuff, but then—
Me: So what do you do when your little (5 year old) girl takes off running?
Him: Well, we’ve worked with her, and she understands and really doesn't run off.
Me: … *cough*(crickets chirping) Um yeah, that may not be my boys...
Motherhood, or “momming,” as I call it (if anything should be a verb, it's momming, right?), isn't easy even under the best circumstances. It's long hours and LOTS of heavy lifting. It's rewarding and infuriating, often from one moment to the next. It’s hopelessly dull and completely enrapturing. Being a parent is not for the faint of heart. To add to all the crazy, most of us don't have perfectly ideal circumstances. For every family, there's something outside the “norm,” whatever that is.
For us, the “normal” parent experience ended at day 2 when the doctors told us Ayden's platelet count was super low. For any who don't know, both our boys were born with a genetic disorder called
Wiskott-Aldrich Syndrome and needed bone marrow transplants to survive. Right about the time we were finally coming out of the woods from Ayden’s BMT, we discovered I was pregnant again, did an amniocentesis at 16 weeks, and found out it was going to be another WAS boy. Two BMTs, a stem cell top off, and a major move to a new city later, things finally seemed to be settling down. Even on the verge of Ayden getting an Asperger’s diagnosis, we were living the most “normal” version of life we’d ever had as a family.
So guess what happened next?!
Momming from a chair is a definitely a different experience than momming in “normal” circumstances. I’m not gonna lie: there are some serious disadvantages. For one thing, as a quad, it's a whole lot harder to grab them. Kids often need to be grabbed for a variety of reasons—to keep them from running out in the parking lot, to catch them before they fall down, to hold them still when they're in trouble so you can get right in their faces and do that scary growling kind of talk instead of yelling…
Eh hem.
ANYWAY, it's also harder to bathe them, make them food, help them get dressed, pick them up if they fall, etc. But, like anytime you deal with any abnormal situation in your life, your choices are to give up or adapt. We’ve chosen to adapt. Or rather, I’ve chosen to adapt and the boys have just done their thing because they're KIDS and kids can get used to just about ANYTHING. I’m also fortunate that they are at ages that they're learning how to do most things for themselves anyway; I’m sure it's harder with a baby.
Now they climb up into my lap when they're hurt instead of me bending down to pick them up. If there's something on a high shelf they want, we work together to get it. When I help them wash their hair in the bathtub, I lean way over the tub (thank God for my seatbelt) to rinse the shampoo from their heads. We give hugs from the side of my chair and big hugs when they climb on my lap. And as for that scary growling voice when they're in trouble, if I can get them close enough, I can lock my arm around their waists and achieve the same effect. 😉
There are some unique difficulties as well. For one thing, if you think Legos make it hard for YOU to get across a room, try doing it on wheels! Less painful, but just as frustrating. The boys’ room is between our room and the rest of the house, and every time I need to cross it, they have to do a clearing job. Ayden has issues that make raising him especially difficult at times, namely Asperger's Syndrome and ADHD. Most problematic is their tendency to ignore me when I get onto them. I don’t know for sure that it's because I’m in a chair, but they sure do straighten up when Daddy shows up and cut up in front of me, no matter how consistent I am with discipline.
The fundamentals of being a mom, however, haven't changed. Some things are harder to figure out (I just built a Lincoln Logs cabin with Caleb. Let me tell you how touch-and-go THAT was.), but most things worth doing take figuring out and practice anyway. All I know is that 2 years years ago today I was sitting in my mom’s kitchen unable to do much more than watch Netflix with my kids and now I can build with Lincoln Logs. I can make them lunch. I can wash, dry, fold, put away, and help them pick out their clothes. I can take them to the playground, and I can hold them when they cry. And I don't know any mom worth her salt who wouldn't fight to do the same. Momming is hard no matter your circumstances. When the choice is between giving up and learning, I can’t believe any of the wonderful moms I know would make a different choice than I.
