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Look At Us

I get versions of this question from time to time: Someone I know just received a hard diagnosis for their kid. What should I say to them? What would YOU say to them? 

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I remember the oppressive pain of those early days vividly, viscerally even. When bright hopes of a particular future are snuffed out, it’s like being instantaneously cold and alone. It’s dark. And the golden moments of your coming life haven't yet started to stack up in the corners of that cavernous darkness. 

There's no right answer, of course, for what to say when speaking into that kind of struggle. Just speaking is the main thing, so long as you mean what you say and don't lob platitudes.

But I've been thinking more about what I would say if I could only offer one thing to that terrified, despairing me of almost ten years ago, to any parent facing the previously unthinkable. And I think it’s simply: Look at us.

Not because we’re perfect at this. Not because we don’t have struggles anymore. But because we’re here, we’re real. And any future of your own you think you’re looking at isn’t really there. You haven’t made your future yet and what you’re seeing right now is mostly sketched with shadows and fear.

But look at us, with almost ten years under our belt. There is a lot of smiling around here. Lots of hugging and laughing. We do art projects. We watch movies. We pick pumpkins.

I don’t mean to downplay the difficulties. Hard things come. But we face them, solve what can be solved, and weather it all together. We keep on moving, and most of the time it’s not a trudge.

The picture above is from a morning after a long, hard night with Collin. I remember how peaceful that day turned out. How much we enjoyed just being together, cuddling and reading books and listening to music. And I had the thought: I wish I could have seen this day in the beginning. My early days as a mother were so strangled by fear for the future that it felt impossible to enjoy the present. But look at us. Happy on the heels of tough times. I think seeing that would have helped me to feel more okay. It may have freed me to focus on the day I was in.

Preventing Suffering

One question I've gotten surprisingly often over the years is: "Did you know about Collin's disorder before he was born?" Most of the time, the person wants to know, Did you have a chance to prepare yourself? But sometimes I can tell they're actually asking, Did you have a chance to avoid this?

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Three weeks ago, CBS News released a story about Iceland's extraordinarily low rates of babies born with Down syndrome, owing to a combination of prenatal screening and "heavy-handed genetic counseling." Approximately 85% of pregnant women in Iceland elect to have the screening and approximately 100% of the women who receive a positive test for Down syndrome choose to terminate their pregnancies.

This is not a post about abortion, so let's all take a deep breath. It's not even a post about the fact that in order for Down syndrome to disappear, people with Down syndrome have to disappear.

This is a post about suffering.

In the CBS piece, the reporter interviewed Helga Sol Olafsdottir at the hospital where over 70% of births occur in Iceland. She counsels women who receive news of a chromosomal abnormality on whether to "continue or end their pregnancies".

Olafsdottir tells them: "This is your life -- you have the right to choose how your life will look like." Her explanation of what happens when the woman chooses to terminate her pregnancy?  "We ended a possible life that may have had a huge complication... preventing suffering for the child and for the family."

We're preventing suffering. If only.

Of all of the troubling aspects of this story, the one that struck me most deeply was the idea that one grossly oversimplified piece of information -- a chromosomal 'abnormality' -- can be a key to avoiding suffering. The idea that avoiding suffering is the goal as a parent. The idea that, regardless of whether you have the right to "choose how your life will look," you have the ability to make your life look a certain way.

The suggestion that a child with 'normal' genetic makeup won't bring you suffering is an illusion at best. Make no mistake: when you choose to have a child, you choose suffering. You can't know what shape that suffering will take and there is plenty of pastel hullaballoo to distract you from the fact in the early days; but it will come.

Maybe there will be terrifying food allergies. Maybe there will be uncontrollable behavior issues. Your child's "huge complication" might be cancer or terrible life choices. 

So why the desperation to avoid this particular "complication", this brand of suffering? Because, as Olafsdottir's statement implies, in our society there is no suffering as undesirable as disability. We can easily speculate on reasons for this: disproportionately low representation of individuals with disability in the media, segregation in schools, lack of education and experience. It all adds up to make disability a frightening unknown, both practically and socially. 

But here's the truth: there's only one thing more certain than suffering in child rearing, and that is joy. You may not know what suffering is coming, but you can count on joy. Always. And, rather than canceling joy out, in some mysterious way suffering actually seems to strengthen it.

This discussion, of course, doesn't touch on the suffering that can supposedly be prevented for the child or the suggestion that it is better to be dead than to live with disability. If you're interested in some thoughts on the subject from the kids' point of view, Collin and his cousins shared this.

The ultrasound above is the first glance I got of Collin's face. Looking at it, I had no idea the suffering that lay ahead of me. I also didn't have the slightest inkling of the joy in store. None of us do in the beginning. We can't. But we can go into parenthood with our eyes open, knowing that our very life is getting ready to become a "huge complication" and bracing ourselves for the joy will inevitably surprise and overwhelm us again and again.

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.