Other World

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"She can understand some of what you say, but doesn’t talk."
"She is umming because she is happy."
"She won’t understand to not wiggle when you poke her in the arm with an IV, so we need to hold her still."
"She likes you and want’s you to hug her."
"She hasn’t had a major seizure for four years. She still has small ones."
"Yes, we’ve seen a geneticist."

We are back in the medical world with Farah. Lots of preliminary office visits and two kinds of short hospital stays to do tests. In this world, Ana and I are Farah’s interpreters and talking medical history encyclopedias. We are dreading the week in the hospital after her surgery.

The way she lives in the moment is an inspiration, but … in this case, there will be pain, and she won’t know why or that it will end. She can’t tell us about it and minimize it by packaging it up in words and turning it into a story about how much it sucks. I fear that she’ll just get wrapped up in it.

Her MRI was much more complicated because we can’t communicate. She can’t understand not to wiggle for an hour, and so she needed to be sedated. And so there was an IV, and she couldn’t know not to move as they fished around in her arm with a needle. I think it would be different for us if we knew she understood it better. It seems even more mean that she doesn’t, and instead just sees two people holding her arm while another stabs it with a needle.

And then they wheeled her off, asleep, into another room and we went to the hospital cafeteria to wait for a few hours, and the maze of wide hallways, fluorescent lights, and endless doorways reminded me of the two weeks I lived in the Children’s Hospital with her. After several days I felt like I was at sea, on a long passage, far removed from the normal world and instead stuck on board a weirdly quiet, sad, and tense ship, with Mom’s sitting alone and crying in the basement cafeteria.

I’m so glad we’ve been mostly away from the world of hospitals and doctors and tests. That Farah is not medically fragile, and that this will probably be over in a few months.

New Plan

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So the day we found out, Ana, Farah, Zelda and I went to a favorite Mexican restaurant and talked about what we want to do. We needed a new plan, now that sailing or traveling is out for the next while. What do we want to do?

We first talked about a giant RV. To drive around the country when Farah can travel, and come back to civilization as needed for her follow up appointments. But no — too chaotic.

Then we talked about houses, but where and how? A farm? A forest? A mountain? A desert? The ocean? An island? In a city?

And so over lunch we all talked and narrowed it down: a house with a small yard, nearby friends, a short walk to school, groceries, and nature. A house of our own, to stop renting. On the West Coast, to be in the same timezone as our family.

Over the next week we spent a lot of time on web, finding houses for sale and then driving through their neighborhood in Google Maps. Ana methodically looked at every city on the coast of California. I looked in San Diego, San Francisco, and Portland. Zelda looked in Albany and Berkeley.

Albany and Coronado both feel like home. But we can’t afford a house in either place and stay retired. Is a dream home worth giving up that freedom? Especially for this year where what I really want to do is hug Farah all the time? Her surgery is likely to turn out fine, but what if these are the last weeks that she can walk? Or how would I feel going off to work, leaving Ana alone to care for Farah, if the future is more difficult than we hope?

Portland stood out as both affordable and having the lifestyle we want. That Saturday morning we flew to Portland and spent the day looking at a dozen houses. All of them were very nice and we could easily imagine ourselves living in any of them.

Hedonic adaptation set in, and we tried to pick ‘the best’ of all the wonderful houses. One stood out slightly from the other dozen, and on Sunday we decided to put an offer on it. It was accepted that evening, our second day in Portland.

Maybe that was too fast. But we’ve lived in so many places: we are confident we know ourselves and what we like. A house is not going to make us happy or unhappy. A nice kitchen or perfect yard, or not, can’t make or break the big picture. Happiness comes from within ourselves, it is something we make up, and cannot be given to us by whatever giant box we live in.

The Explosion

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Ears ringing so loud I can barely hear. Everything is bright. My eyes look around like a bomb just went off.

But look calm. To Ana and Zelda and Farah. Be positive.

That was the first hour after hearing the news.

When Farah was one year old and first diagnosed with Angelman Syndrome, I found two awful things that could be in her future. Seizures that don’t stop and she dies. And scoliosis so bad she needs surgery.

We mostly dodged the seizure bullet. We’ve only had to call 911 and go for an ambulance ride a handful of times. By the second grade she was only having large ones when she was sick. I am so relieved and grateful for this.

Then ten years later Ana came home from the doctor with the news. And a new term to Google — ‘posterior spinal fusion with instrumentation’. I couldn’t even look at diagrams or photographs of the surgery.

Hours passed and then my ears stopped ringing and all that remained was this feeling that spiders were everywhere. I looked around and it’s like the whole world was hostile and alien and ucky. I looked at Farah and only saw an imminent tragedy.

But I knew I was freaking out. I remembered all the stories from other parents, whose children went through this. Most turn out OK, and the surgery is good. But I kept thinking about how it has gone horribly wrong for some kids. Infections that retreat to the metal rods and require a second back surgery to remove the rods, then, in one rare case, the child’s spine bent back. A fall that breaks the bones from the carefully arranged alignment before they have a chance to grow completely around the rods. Nerves that get damaged and result in less mobility or pain forever. Multiple surgeries that never fix it and the child never walks again. Something wrong that prevents the needed surgery from happening in the first place, and the child eventually dies from the spine deforming their body so much that their lungs and heart stop working.

Farah will most likely be fine. She will have a very tough week, then a slightly less tough second week, and second month, and etc, and in all likelihood, she will walk better than she does now and it will be a miracle and this will be a turning point for good.

Ana and I just have to put on our super parents hat and figure out all we can do to keep her comfortable and prevent complications. Complications that are more likely because she still wears diapers and will have a long incision on her back, and can’t tell us if she is in pain or feels tingling in her legs, or won’t breathe deeply when we need her to or follow other directions.

But I am hopeful. Something bad could happen, but it’s most likely this will work out fine; we don’t need good luck— just an absence of bad luck. The ringing and spiders are gone, and I am again focusing on the wonderful now.