Monday, December 15, 2014

Three Wishes

Some times these kids just blow my mind... Today, Sky brought a paper titled "Three Wishes" home from school. I'd seen it hanging on the wall outside his classroom a month ago when I went for his parent-teacher conference. As I stood waiting for my turn to meet with his teachers, I read 20+ wish lists from the fourth-graders in Sky's class. A lot of the kids wanted things like new puppies, televisions, and gaming consoles. When I got to Sky's, I stopped short. 


Back when he was in Catholic school, Sky asked his classmates to pray for his dad every single day. He believed that God could hear his prayers and make Ren's back better. I believed that, too (still do). But, I also believe sometimes we don't get the answers we hope for.

As it has become clear that the back isn't going to get better, my conversations with Sky have shifted to an ongoing discussion of how life doesn't always go the way we want. This is a hard one for my boy who only sees the world in black and white. There's no good social story for this universal truth.

Ren's back is not going to get better, Sky will always struggle on some level with his difference, and, yes, those two realities means we are all sometimes more stressed than we'd like to admit. But, like I tell Sky whenever our conversations turn to questions of why, the why doesn't really matter because in the end it's up to us to find joy in the hard stuff.





Tuesday, December 9, 2014

On Being Strong...

Awhile back, I wrote this post about having my hands full. Then, I was sure I'd reached the limit of what I could carry. It was a metaphor, of course, for dealing with Ren's unexpected back issues while working full time and parenting three young kids who happen to have a whole host of allergies and developmental challenges.

It turns out, I had no idea what I was talking about in that January 2012 post. Because after I wrote it, Ren had four spine surgeries, including one 6 weeks before my dissertation defense, and we learned not only that he has permanent nerve damage that will forever impact his ability to walk but also that the back isn't done, yet.

The back is bad.  I mean, really, really bad. See, Ren has congenital spinal stenosis. In other words, he has an unusually and severely narrow spinal canal. As a result, the nerves in his spine are highly susceptible to impingement, whether it be from arthritis, disc damage, or bone spurs. In practice this means that one day he can feel like things are getting better and all of the interventions have helped, and the next he can be laid so low by some other something going slightly out of whack that he can't even get out of bed.

Last week, when were visiting the spine doc to follow up on an MRI, I finally got the courage to voice the questions Ren and I have been subconsciously grappling with for months—you know, the ones that made us buy a house with minimal steps required to get in the front door and a master suite on the first floor.

I love Ren's doctor because the first thing he did was apologize--I mean sincerely tell us how sorry he was that all of this is so difficult. It's hard when you know you're making your doctor feel bad. It's not his fault the back is what it is. We know that, and I told him so. But, we also really need to know how this might go. So, I kept asking questions. And he kept answering them.

"Will Ren become unable to walk?" I asked.

"I hope not," he answered, exhaling sharply. "We will keep on top of it so that doesn't happen."

"Will the pain become so debilitating that he won't be able to function?"

"There are things we still haven't tried," he said, this time reassuringly. "They should help."

"Will there be more back surgeries?" I asked, already knowing the answer but wishing I didn't.

"Yes. At some point, the whole spine is going to go."

"When?" I already knew the answer to this question, too, but I had to ask just the same. Sometimes I can't help but be optimistic.

"I don't know," he said, "but we need to hold that off as long as we can. He's still young."

He's still young....

He's still young, you guys. At least young enough that none of this should be happening to him. But it is. It's happening to him, to me, to all of us.

It turns out that having a spouse with a somewhat rare, chronic, life-altering condition is a lot like having a kid on the autism spectrum. Little by little, the reality of what you face opens before you. It's not a dramatic shift, so for a long time, you hope you aren't seeing what you think you might be seeing. Then, slowly, in increments, you start to understand the nature of your new reality. It's incredibly disempowering and frustrating. At first.

But then you figure out how to get up and face each day. You figure out how to do whatever it is that you need to do. You learn to laugh. Sometimes you cry. But most of all, you just keep going.

Friends tell me I am strong, that they can't imagine how I manage it all, that they would never be able to do what I do. I never know what to say in response. Often I say nothing. And, mostly I wonder if having the capacity to handle a great deal of adversity makes me strong or whether it is just proof that I have never, not in my whole entire life, known when to give up. I'm pretty sure there's a difference between the two, but, then again maybe it doesn't really matter.

Tuesday, December 2, 2014

Reno (Or Should I Say Demo?) by Pink P

When you become a parent, you develop a supersonic sense of hearing. From two rooms away, you can tell which kid is playing with which toy or whether the thud you heard was someone's head or a book. That's why when I heard a crash larger and louder than any I'd heard before, my instinct was to run downstairs to see what was wrong.

Pink and Stow were playing together so nicely, though, and since I didn't hear any yelling or crying, I decided it was just my imagination (Parenting Pro-tip: It's never just your imagination).

Fifteen (fifteen!!) minutes later Pink came to me and calmly said, "I think I made a bad choice." This was a whole new and slightly disorienting tactic for her.

"Why?" I asked.

"I was trying to reach a toy and the shelf fell," she replied just a tad too nonchalantly. Pink doesn't do nonchalant. Ever.

"Which shelf?" I asked, though thinking back to the large crash, I already knew the answer.

"Don't worry," she assured me. "It landed on something sturdy."

*****

Before we moved into our current house, we finished the basement.

It went from this:


to a space that includes a bedroom, a bathroom, a play room, and a "media" room. While I appreciate the extra space and (most importantly) the fact that the kids can GO DOWNSTAIRS TO PLAY, what I love more than anything is the playroom closet. When we were designing the space, the contractor came up with a conservative little 5 ft x 5 ft closet tucked away around and beneath the stairs. "That's nice," I said. "But it needs to be bigger."

See, I envisioned a closet so big that not only would it hide each and every toy in our house, but it would also provide storage for all of our seasonal items. I imagined a magical world free of toys in which I no longer had to climb down cellar stairs (or up attic stairs) to unbury boxes of holiday decorations. In other words, I imagined heaven on earth. It took a second opinion and  a different contractor to get what I dreamed of--a glorious 6 ft x 12 ft closet running the length of the room. When the basement was finished, the sight of the new closet brought tears of joy to my eyes (NOTE: I am only being slightly hyperbolic here; I mean a person can only take so much toe-stubbing and cellar digging before she's reached her breaking point).

The kids immediately took to the space:

The first day, begging to camp out.
Soon the closet was full of all the junk I imagined it would hold and more.

And everything was perfect.

That is, until Pink decided to try her hand at demolition. The good news is that no one was hurt and nothing on the shelf was destroyed. The bad news is that she pulled an 8-foot wire shelf out of the wall.

In case you're wondering, I questioned the contractor about the strength and stability of a shelf this long especially given its proximity to the ground, and he assured me it would be safe. Yeah, right.
Pink is the kind of kid who weeps when someone looks at her sideways, and who tends to overreact to everything. But, she did not make a peep when this monster of a shelf came out of the wall, bringing with it toys and Christmas decorations. This may turn out to be one of the greatest mysteries of my life.

*****

The detached shelf left us with 20 perfectly aligned little holes just like this one.


Ren and I have our skills--his being, by and large, more useful than mine--but neither of us had ever patched a wall before. That's the joy of having children, though. You always have opportunities for skill development and personal growth.  

After Ren was finished, we had a wall full of awkwardly-shaped (but perfectly aligned) blots of spackle.


Fortunately, most of the spackle spots were soon covered by the various storage containers that now fit nicely where the shelf once hung.


It turns out that Pink P's forced shelf removal may have been a stroke of genius. More things fit in the closet now, and now there is no tempting dangerous shelf for the kids to climb.



Need storage solutions for the holidays? We've got a nice 8-foot shelf to spare, and we're thinking about renting out Pink P's renovation and reorganization services. Who knows, maybe things will work out as well for you as they did for us. Then again, maybe they won't. After all, not knowing is half the fun.