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Retreat

Here's what I think happened:

When things fell apart with school last year, it was a bigger shock than I anticipated. I thought I had been holding the outcome loosely. "We're just going to see what happens," I told people when they asked how it was going. At every step forward, I cautioned, "It isn't over till it's over." But then when it was over, the result felt like a confirmation of what I had feared all along: that there is no place for Collin. No place for us.

And without realizing what I was doing, I retreated.

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Attack doesn't make me retreat. That's when I stand my ground or make plans to advance and overcome. It's disappointment that makes me want to circle the wagons, and I was deeply disappointed. So, I pulled back. My writing on the blog became less personal and less frequent. I stopped talking about homeschool in particular and sometimes felt reluctant to talk about Collin at all.

When I first realized what had happened, I felt ashamed. To retreat is to admit defeat. I'm supposed to be Collin's warrior mama, never taking no for an answer. But as I journaled one day, I noticed that if you take the word 'retreat' from verb to noun, its tone changes. To retreat is to give up, but to take a retreat, to go on a retreat, is to withdraw with the purpose of coming back better.

* * * * *

Collin has outgrown a lot of the shows he watched as a little kid, but he is a long-time devotee of Yo Gabba Gabba. In one of his favorite episodes, Muno and Brobee build themselves a clubhouse. When their friends, Foofa and Toodee, come to play, Muno and Brobee won't let the girls come inside. They claim there is a secret password, but they won't share it.

Toodee and Foofa are surprised and hurt to be shut out when they thought they would be invited in. They get angry and want to make their friends do the right thing, but ultimately realize there's nothing they can do about it. So what do they do? They leave. They go somewhere else and build their own club house to their own liking. While they're learning this hard lesson, they sing "Do Our Own Thing," which I admit chokes me up from time to time:

We'll do our own thing, we'll have our own fun.

We'll do our own thing, we'll laugh, play, and run

We'll do our own thing, that's what we can do

When you want to play, but you get left out

When you want to go along, but get left behind

When you want to fit in, but there's no more room,

It's better not to let it get you down, and that's when we'll

Do our own thing.

A lot of Yo Gabba Gabba lessons are a little on the preachy side for my taste, trying to convince kids to act the right way through guilt or self-interest, but I love this one because it offers practical advice for what to do when you can't control a situation. When you can't make someone do the right thing. Which is always.

And now I realize that that's what we did. When the door was closed, we decided not to bang on it. We left. Yes, I was sad and didn't want to talk about it for a while. But we didn't spend much time sitting still. We were busy building our own place, finding our own people, doing our own thing.

Living With It

The nurse for the second surgeon was kind and motherly. When I balked at the impossibility of our situation, she advised us to make the best decision we could with the information we had and then not look back.

Which is much easier said than done.

The most common question I've been asked since deciding not to do this hip surgery for Collin is: Are you relieved?

Yes, I'm relieved to have the decision behind us. I'm relieved that he will not have to endure the surgery. But we also went into this knowing that there were substantial risks either way and that with either route, we were choosing the set of risks we could live with. And that's exactly what we have to do with this decision: live with it.

Because the answer is also no: I'm not relieved. Every time Collin seems to be uncomfortable and I don't know why. Every time his right foot rolls worse than normal or his legs scissor while he's in the gait trainer. Every time the thought sneaks up on me. I worry that we made the wrong decision.

Of course, I would be second guessing our choice even if we had gone the other route. So the crucial part of living with this decision is using my doubts as an opportunity to remind myself. I remind myself not only of why we made the choice we made, but also of the things we were reminded of in making that decision: our big picture, our approach to Collin's childhood, the pattern we have laid out for ourselves with all of the decisions we've already made and lived with.

Deciding

Even if there are no good options, you still have to make the decision.

When we left our appointment with the surgeon, we went for ice cream and agreed not to talk about it until we had had some time to process. It took three full days.

We started off just saying some things out loud -- things we were afraid of, things that seemed so unfair. Eventually, details started to surface and shuffle around and settle down where we could see them. We felt ourselves leaning in one direction, but also saw the gaps in our knowledge. 

I did more research. I contacted doctors and therapists with more specific questions. And Kyle and I talked and talked and talked, first with each other and then with my sister and brother-in-law, who are Collin's guardians in our will. Here's what came out of those talks:

When Collin was a baby, we were new to impossible decisions and most of them pertained to Collin's survival. Since then, we've had years of practice making tough calls and when we looked back over them, we saw a pattern: we have aimed for maximum impact with minimal intervention. 

I call it a fortress of support. We build it around and under him with therapy and specialists, but also with down time and nutrition and lots of individualized attention. We try to give him every opportunity to go as far as he can and follow him as he goes (or stays), remodeling his fortress as needed.

With that in mind, we couldn't see doing an incredibly difficult and invasive surgery to prevent something that may never happen. If we lived in the land of trying to prevent scary things that might happen in Collin's future, not only would we constantly be subjecting him to procedures, but we would lose our minds with worry.

And so we decided not to do the surgery.

We are not afraid to do hard things. This is not a way to avoid difficulty. In either instance, we knew we would be accepting a set of major risks on Collin's behalf. These were the risks we could live with.

Relearning Lesson One

On the morning of my husband's first Father's Day, I sat hunched over my laptop, feeling something shift and desperately wishing I could stop it.

The video showed a baby doing the same jack-knife movements four-month-old Collin had been exhibiting. The video description advised packing up and going straight to the hospital. And the woman who posted the video wrote this:

"There are no more easy options for your child."

The words rang in my heart as unwelcome and true, though I didn't know the extent of it yet. It's a line that has both haunted me and provided a useful handle to grab onto when trying to explain what's so hard about this journey. 

But Collin has been thriving in recent months and years, so there haven't been many decisions to make. Consequently, I had forgotten the magnitude of that first lesson when we traveled to a reputable children's hospital for another surgeon's opinion on Collin's hip surgery. We went prepared to move forward, assuming the doctor would heartily back our first recommendation: do major surgery on both hips, and the sooner the better.

What we got, instead, was something much more nuanced and complicated. The doctor wasn't so sure this surgery would improve things for Collin in terms of function -- the sitting, standing, step-taking part of his life. Maybe it would, but maybe it wouldn't. This surgery was really about alleviating pain. But Collin is not in pain yet and we can't be certain he ever will be. If the pain comes more than 6-12 months from now, it will be too late to do this surgery. Then he might need a different surgery, one with a rougher recovery. There is no way to know for sure. With every question we asked, the answer seemed less clear.

When the doctor stepped out of the room to give us a chance to talk, I stared at my healthy, smiling, kicking boy. Then at my husband, also trying to wrap his mind around what we had just heard. Then at the nurse, her brow furrowed with compassion. 

I said out loud to the room, "So, we have to make an impossible decision and make it soon."

And as the words left my mouth, I flashed back to that moment seven years before, when I stood up from the wicker chair, clutching my laptop with its looping videos of seizing babies.  This was the same life I had been living all along, I told myself. Collin was the same as he had been yesterday, I told myself. But as I walked toward my waiting husband and son, I could feel myself stepping over a threshold I would never be able to cross again.

Good News Friday

The good news today is that April is National Poetry Month. There's nothing like a good Billy Collins poem when you're needing some good news.

Hippos on Holiday 

is not really the title of a movie
but if it was I would be sure to see it.
I love their short legs and big heads,
the whole hippo look.
Hundreds of them would frolic
in the mud of a wide, slow-moving river,
and I would eat my popcorn
in the dark of a neighborhood theater.
When they opened their enormous mouths
lined with big stubby teeth
I would drink my enormous Coke.

I would be both in my seat
and in the water playing with the hippos,
which is the way it is
with a truly great movie.
Only a mean-spirited reviewer
would ask on holiday from what?