A Few Thoughts About Andrew

A few weeks ago, my little brother Andrew died rather unexpectedly.

I shouldn’t say unexpectedly; we’ve kind of been waiting for his body to give out for the past few years. He’s been in and out of hospitals most of his life. Cardiologists have been impressed his flawed heart has made it this long—even half this long.

Still, that almost made it more unexpected for me. I’ve been living my life with the understanding that Andrew was a medical miracle, that he would stay until he died, and that I had no way of knowing when that was. When he was actually dying, I only really had about two days’ notice.

Mom sent out a text from the hospital (where Andrew was staying, again, and nobody seemed to bat an eyelash, because he’s in the hospital all the time.) Anyway, Mom sent out a text talking about how difficult it was to watch her son struggle to breathe, and she felt like he might not have much time left. She hadn’t slept all night, watching by Andrew’s bedside. I assumed she was overreacting and sleep-deprived, and called Dad to find out what was going on. Dad confirmed what Mom had said, though; Andrew didn’t have long to live.

Ethan came home from work early and drove me down to the hospital, then waited with John while I went up to say my goodbyes. Andrew was ornery, mildly sedated, and unamused by my comments about the cute nurses. Eventually, I got a smile, a hug, and an understanding that he wanted me to go back to Provo. Which I did.

The next morning, my parents gave the okay to take out his IVs. I came back the next day, just to see how he was doing, and walked into the room just as he was taking his last breaths. I stayed to hear my dad give him a final father’s blessing, then to watch him die. It wasn’t as fast a process as I thought it would be, but it was also more peaceful than I had expected.

Over the last two weeks, I’ve been blessed by friends and family willing to help me clean, talk, cry, and laugh. My cousins’ children learned enough sign language to perform a musical number in ASL at the funeral. My aunt and uncle stayed while Andrew died, and then stayed in town throughout the next week. We’ve received a lot of support as a family.

It’s been an unusual grieving process for me; when my cousin’s wife died last year, I had a harder time accepting it. She was young, healthy, and had a husband and child to take care of. My brother, on the other hand, probably took a step up by leaving his body behind. His health was crap, and has been getting worse for years. As his pain levels went up, his personality clouded, and he got crabbier and crabbier. Besides all this, he had special needs, and looking at the afterlife raises interesting questions there.

I have never doubted that there is life after death, or that we will be the same people there (wherever) as we were here. But leaving behind his physical body means, technically, my brother might not have Down Syndrome anymore. I don’t know whether he’s autistic now—I don’t know enough about it to feel out whether that’s a physical-body-only thing, or whether that’s a personality thing. At any rate, I do have a strong impression that he’s much better able to think, function, and express himself now than he has been for the past twenty-four years. I just wish I was as able to listen.

We had a remarkable opportunity on Saturday to meet with a General Authority from the Church, Elder David Warner, who was in town for a stake conference. Apparently, my parents’ stake president told him what we were going through, and how much our neighborhood had banded together around my parents. The two of them arranged to meet us at my parents’ house.

I was expecting to be intimidated, or at least to feel a little guilty. I’m pretty sure that was anxiety talking, though—he introduced himself as “David,” chatted with my parents about favorite cars, and ate cookies while trying to make friends with my son, who was running circles around the room and chattering like a monkey. He asked about my brother, listened to our funny stories, laughed with us, sympathized, and assured us that Andrew was uniquely equipped now, more than ever, to sympathize with people who had led difficult lives. “You have a missionary in the field,” he told my parents,”and you should expect blessings to come to your family as a result of that. Andrew can now share the gospel with those who’ve already died, and he has experiences to draw upon that few others do.”

I was also struck by the reverence with which he looked at my  parents. “You’re doing this right,” he said. “There’s joy in this room. And that means you appreciate the time you were given with Andrew. Don’t feel guilty for being happy without him—he’s still here.” He then gave each of us a personal blessing before leaving us with a smile and a request to stay in touch. Mom, of course, gave them cookies for the road.

I’ve had my faith and my endurance tried over the past few weeks, but one thing I know for certain: God loves me. He loves my brother. And my brother—who is just the same person he was before he died—loves me, too. It’ll take some time before I see him again, but I have no doubt that I’ll recognize him, and we’ll finally be able to sit down and have a good, long chat. ♦

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I Wrote a Book!

Hey, everybody! Remember my brother, Andrew?

(If you don’t, try these articles:

Well, he’s hilarious. And in addition to being hilarious, as a small child, he was also destructive. You know that kid in the neighborhood, who seemed to get into trouble every two seconds? Yeah, Andrew was that kid.

So I wrote a book about him! One day, he may forgive me for this. (I deliberately avoided any dating stories, or other “seriously, I may kill you for this” topics.) And this post is my shameless plug; I figure if you read my blog, you might enjoy my writing at least enough to read it. So here’s the information about the upcoming book:

It’s being “prettified” right now (which means once I get over the croup, I’m fixing the typos.) It will definitely be on sale through Amazon by the new year, but I’m hoping to get it up and running by Christmas.

But, if you’d care to try your chances, you can also enter the Goodreads giveaway:

Goodreads Book Giveaway

Applesauce on the Ceiling by Rachel Unklesbay

Applesauce on the Ceiling

by Rachel Unklesbay

Giveaway ends December 31, 2015.

See the giveaway details
at Goodreads.

Enter Giveaway

More details to come, as I get this thing rolling! ◊

Why I Don’t Teach Sex Ed

I’ve been staying with my family for the last few days, and by this point, I have little modesty left about breastfeeding/pumping. So I was just sitting on the sofa with a pump on my right breast, talking with my parents, when my brother came wandering by.

My brother is 22. He has Down syndrome and Autism. He’s seen the baby. He’s seen me feeding the baby. He’s seen me pumping milk for the baby. But apparently, he’s never really taken the time to figure out what I was doing, and apparently I’ve never taken the time to explain.

He stopped mid-stride and froze, like Bigfoot. His face was frozen in blank horror, and his eyes went from my face to the bottle on my breast, slowly filling with milk, as he connected the dots. After a few very long minutes, we explained with some comment like, “This is where I get the milk for the baby.” He was beyond weirded out. I couldn’t find any non-weird way to explain any further. “Boobs make milk, man. That’s why mommies have them.”

He went to sit down on the recliner as we laughed at his reaction. He leaned warily away from me, eyeing the contraption attached to my chest. Dad told me that, shortly after little John was born, Andrew signed, “Baby. New. Throw up.” I laughed.

“I didn’t throw him up,” I said to Andrew. “It’s more like I pooped him out,” I said, reflecting. Then I saw that look come back onto his face and realized this was not accurate, nor was it any less unsettling than the idea of throwing up a baby. “Well… the doctor helped…”

“…”

“…He’s okay now. The doctor helped me get John out, and everybody’s okay.”

Andrew was looking at me with a face that said something like, “I really don’t want to believe you – but I just saw you make food out of boobs, and at this point, I’m really not sure what kind of world I live in anymore.”

A few minutes later, he was on the couch, giggling, holding his shirt up and pointing to his own nipples. I offered to let him use the pump, but he didn’t follow up after I finished pumping, and I figured it was best to just leave it at the explanation we’d offered him: only moms make milk.

Meanwhile, I feel like I’m failing miserably at teaching sex ed, and I haven’t even touched the subject of how the baby got there in the first place. I’m just gonna leave that one to my parents. Oy. ♦

“Politically Correct” Does Not Mean “Correct”

politically-correct-monsters

Let’s talk a bit about political correctness.

I’m a grown woman. If you were being politically correct, you would assume that I’m an independent, sexually active woman who takes no orders, climbs the corporate ladder, demands equal pay, and plans to become CEO of a major organization.

You would, however, be incorrect. I am a happily married housewife, unemployed (outside the home), pregnant, and often found barefoot in the kitchen making sandwiches for my husband’s lunch. I would make a terrible CEO, and I feel I’ve always been paid the same as my male coworkers. I am an adult. You’ve got that right. The baby inside me attests that I’m sexually active – although I was (by choice) a virgin until my wedding day, so I probably don’t fit the feminist mold there, either.

Now let’s take a look at my brother. My brother is a grown man with Down syndrome and Autism. To be politically correct, you would generally assume that whenever he does something well, he has overcome great challenges, and should be praised. Whenever he’s done something wrong, however, you should give him some slack: he’s doing the best he can.

My brother can navigate you from here to Disneyland, if you’re willing to let him choose which streets to take. He’s driven the route once. (He wasn’t driving, actually – but you know what I mean.) But he didn’t overcome great challenges to learn to do this. It’s just a talent he has. He’s got a map in his head. He would look at you funny if you praised him for it. You’d also be incorrect if you assumed he was “doing his best” that one time when he threw up in my dad’s soda when Dad wasn’t looking. That wasn’t because he didn’t know any better. It was because he had a sick sense of humor.

It would be politically incorrect to assume any of these (correct) things about either of us, however, because we’re minorities. (Women aren’t actually a minority, but we’ve somehow gained that political status.) But are you really being politically correct if, in your effort to be so, you end up incorrect? At that point, you’re just political. And frankly, given the way politics go in this country, that means you’re dishonest, backbiting, manipulative, and blame someone else for everything that goes wrong.

Of course, I can’t say that about all politicians – it would be incorrect.

Do you see my dilemma here, though? I don’t want to offend people – but there’s something wrong if I’m not allowed to tell the truth about someone just because he’s gay, or she’s black, or he’s an illegal immigrant, or she’s a feminist. If my special needs brother does something stupid, I reserve the right to tell him to knock it off, because he’s not actually stupid. If my female friend wants to major in Home Economics, she should be applauded for seeking a college education in a field she enjoys, not torn down because she’s choosing a stereotypical field. If my gay coworker takes money from the till, he should be sacked for taking money from the till. If watermelon is delicious (which it is), I should be allowed to serve it to my black friends – because I like all my friends, and they all deserve to eat watermelon.

Can we please stop focusing on being political and just start being correct? ♦

Expecting Adam

expecting adam

So, I’m writing a book about growing up with my brother. And, having never written a memoir-style book before, I thought it would be good to do a little research. I picked up a copy of Expecting Adam from the Provo City Library, remembering my mom telling me about it years ago. She said it was about a woman who used to be Mormon (which I am), talking about giving birth to a boy with Down syndrome (which my brother has). Great! This will fit perfectly!

Or not. In fact, within the first fifty pages or so, I found myself just kind of staring at the book thinking, “Who is this woman?” Don’t get me wrong – it’s incredibly well written. And I was expecting this pregnancy and diagnosis to be a real change of perception for Martha, the author. I just don’t think I was prepared for a perception change of this magnitude.

The problem was, she started off so confoundedly ignorant. And not in the “I don’t know much about Downs” kind of way. More in the “I didn’t know Downs people were capable of intelligent thought” way. And I sat there, completely stupefied by it all, and it slowly dawned on me just how abnormal my childhood was.

My brother has Downs. (He also has Autism, but we didn’t realize that until much later.) He was born when I was three years old. I grew up thinking Down syndrome was about as “different” as red hair. Uncommon, yes. An actual problem, of course not! So when I picked up this book, I was looking for ideas about the organization and style of my own book. By the time I was halfway through, however, I realized the gaping hole I would have otherwise left in my writing: I assume everyone is familiar with special needs.

And if Expecting Adam showed me anything, it is just how uncomfortable some people can be with the idea that a child is imperfect. I’ve always assumed that every child is imperfect; I was born perfectly healthy, with a reasonably high IQ, and I still managed to shut myself into my own locker in junior high school. I take for granted that everyone understands that we all have different strengths and weaknesses, and some of those – like Down syndrome – are more visible to others, while others – like a short temper or an anxiety disorder – can be hidden a little longer. But Martha Beck has pointed out to me that many people go their whole lives suppressing this, putting on a good face, and pretending to be perfect. And for some inane reason, they think they’re succeeding.

This book frequently made me want to throw things across the room. (See “short temper,” discussed above.) And then it made me just want to sit down with people and talk, and tell them about my own experiences. It made me want to tear down the walls people put around themselves and just talk to the real person inside us all, the one that’s so terrified of getting eaten alive that it never comes out to see the sunlight. And as angry as I was at all the people in Martha’s life telling her to get an abortion, or ignoring her new baby, or at Martha’s own doubts – which made zero sense to me, because I never went through this paradigm shift – I mostly just wanted to find all those people and give them a copy of this book.

I’ve frequently read the phrase, “If you’re offended by this, I’m offended by you.” And even though I wanted to throw eggs at the homes of some of the doctors and nurses and Harvard professors in this book who thought that Martha’s son Adam would never amount to much, this book has taught me that that phrase is ridiculous. I propose replacing it with, “If you’re offended by this, please tell me why. I’d like to share my own experience.” If you’re uncomfortable around people with special needs, that’s where you’re at. You don’t have to pretend otherwise. But please read this book. It will help answer questions, break down fears, and resolve confusions. And at the same time, you’ll end up with questions you never even thought of.

Well, there’s my soap box. Expecting Adam is a beautiful book, a sacred journey through the author’s soul, and a life-changing read. ♥

Birthday Wedding Cake?

My brother Andrew has Down Syndrome and Autism. He speaks using mostly broken sign language and English combined – when he feels like talking, that is. We met him today to give him a birthday present (happy birthday!) and he got a little worried. We gave him 3 1/2 pounds of Swedish fish. He immediately panicked, signing, “throw up” and “full”. He suggested we give them to Dad, because Dad wouldn’t throw them up.

While Mom and I were off paying for a train ticket, Andrew and Ethan chatted a bit. IT went something like this: “What did you get for your birthday?” Smiles. “Did you get anything?” Yes. “What did you get?” Smiling again. “You have to tell me what you got!” Cake. “Cake?” Yes. “What kind of cake?” Rachel. Wedding cake. “For your birthday?” Rachel’s wedding cake. All smiles.

After further consideration, we’ve noticed a pattern in Andrew’s storytelling. It doesn’t follow a chronological order; it follows a topic. Instead of telling a story about his birthday cake, he tells about all the cakes he’s ever enjoyed. Instead of talking about his visit to the hospital, he talks about all the things that doctors do. So, in light of this pattern, here are a few of the topics Andrew most frequently talks about:

  • Cakes I have eaten
  • Pizza I have eaten
  • Times when Rachel got married/will get married… still…again?
  • Times I have thrown up
  • Temples my sister has and has not gotten married in
  • Things I can put spiders on
  • People I know who have gotten an IV at the hospital
  • Times I have been bitten by the dog
  • Bad things the lawnmower can do
  • The price of Swedish fish
  • Anything that has ever happened with Alvina present

The list is growing slowly, but these are his favorite conversation topics. I recommend shaking things up at your dinner table by spending the entire time talking only about the creepiest spiders you’ve met, just as an example. And no chronological story-telling allowed – you have to follow up each spider with another spider. All spiders become the same. Let me know how it goes. So far, we like the style. ♦