Tuesday, June 4, 2013

An Unbecoming Post in Which I Feel Sorry for Myself

There are probably thousands, if not millions, of ways life has not gone how I thought it would. And, for the most part, I've learned to let go of my expectations since things tend to turn out way more fun and interesting than how I imagined them anyway.

I mean, I didn't expect to spend most of my life in the Midwest. I didn't think I'd be a stepmom or end my tennis career with a torn ACL. I didn't expect to have a kid on the autism spectrum or to deal with life-threatening food allergies.  I could go on forever (but I won't) about all the things that I didn't see coming. I will say, though, that even when things haven't gone like I thought they would, something better has happened instead. I'm not a huge quoter of scripture, but I've often felt my life with Ren has been filled with the "immeasurably more than we ask or imagine" of Ephesians 3:20 (which happens to be the bible verse used in our wedding message).

Having a kid on the autism spectrum stinks, but it's also really interesting. Sky sees things so differently that it's kind of like living with someone on a never-ending trip. He's one non sequitur after another. And his quirkiness is often just enough to keep all of us on our toes.*** Despite his challenges, I'm sure Sky will become a functional member of society. Who knows, given the way he sees, hears, and conceptualizes the world around him, he may even do something amazing.

In other words, I have hope that Sky's ASD (and Pink P and Stow's allergies and asthma) are manageable and ultimately won't define them. But what I don't have much hope for is Ren's back. Ren's back is the shits, you guys. I don't think I'm exaggerating here. He can't stand for longer than a minute, and he can't walk more than 30 feet unless he's pushing something. He looks like a little old lady with a walker, which would be cool if he was old and if we didn't have three small kids. I mean, really.

Obviously, this means he also can't lift, which is totally awesome when facing an inter-state move. Yeah, it's inconvenient, but much worse than that is the fact we are staring down a much different future than we'd imagined. Ren and I started dating because of our shared love of hiking and camping. He convinced me that I wouldn't regret marrying an older man when he ran to the top of the mountain to check out the view for me (and then ran back down to tell me we should check it out together, which we did). I'm guessing we're never going to hike or camp again, so our kids will never know that part of our lives. Ren can't run or do judo or any other physical activity he used to love. He can't fly or drive for long distances. He can't give the kids piggy back rides or lift the baby. There are a lot of things he used to do that he won't be able to do any more, and it's heartbreaking to realize that the kids will never know those things about him.

Most days we try not to think about all we have lost since the back went south nearly 2 years ago. But with each back surgery (two so far) and the subsequent deterioration of his overall condition, it's hard to stay positive.  I'm not sure what to say to the kids when they tell me they can't remember Daddy ever being able to swing them around and carry them on his shoulders. All they know now is the daddy who can't come to their dance recitals and gymnastics demonstrations because he can't stand to sit for that long.

We haven't given up, not by a long shot, but I'm afraid it might be time to entertain the possibility that this is as good as Ren's back is going to get. And, I'm sure one day I will look back and be able to see that "immeasurably more" that I so wholeheartedly believe in. I'm just not quite there, yet.

***I'm not saying I'm glad he's autistic, I'm just saying that even though having an autistic kid is hard, it also leads to some really fascinating conversations.


viviane said...

And I feel for you, too.

Mama D said...

The "in sickness and in health..." become real rather than abstract. :( Wishing you grace and strength and patience to go with your love.