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. ♦

Merry Christmas, From David

Last Saturday, I had a prenatal “Coping With Labor” class. It was basically an extensive “how to keep from freaking out when you’re in pain” workshop, and I was kind of feeling alienated. For one thing, Ethan had his final graduation project due in a few days, and couldn’t come to class with me – so I was the only person there without a partner. I hadn’t slept well, and I was trying really hard not to fall asleep throughout, and my voice was way lower than usual (because I was half asleep), and I didn’t think I was looking too hot (because I was half asleep)… basically, I wasn’t feeling too social or too confident. And when you combine an unsociable mood with 8 months of pregnancy, you seriously just don’t feel like talking to people.

When the nurse mentioned that some people like to listen to more “peppy” music than others during labor, my brain immediately started playing “Dirty Deeds (Done Dirt Cheap)”. That was stuck in my head until the class concluded, at which point my brain switched over to “Highway to Hell.” Wow, I thought. I’m ready for motherhood. I was starting to think I was a total freak.

On top of all this, I’m usually a very active person, and I try to go out of my way to help people around me. During pregnancy, however, I apparently Animorph into a gigantic slug. I have zero energy, and not enough brain power to finish a sentence. Over the past few months, I have become a vegetable of sorts. I’m here. I live. I just don’t usually feel like I contribute to society. And when I try, I usually end up hurting myself.

Long story short, Saturday morning I was on autopilot – and by about noon, when the prenatal class ended, I was kind of feeling sorry for myself. I stopped off at Arby’s on the way home (the baby was driving, apparently), went in, and ordered more food than I probably had room for. I tried to smile and be friendly and all that, but I was also avoiding talking to anyone unless I absolutely had to. I got my food and went to a back table, where people would be less likely to see me.

That’s when a guy came in, sauntered over to the corner table across my way, and dropped his backpack on a chair. He sat down for a few minutes, looked around him with a smile, and then stood up and walked around the restaurant. He walked in a circle around the tables, glanced at the menu, ordered nothing, then sat down again. A minute later, he got up and walked another lap around the Arby’s. I began to suspect he had some kind of mental disorder, but he was enthusiastic enough that I started smiling.

After taking another lap, he came up to me, pulled a receipt out of his pocket, and wrote something down on it. I wondered if he were Deaf, and needed me to order his food. (But why wouldn’t he just write it down for the cashier? I thought.) He handed me the receipt, and I saw the words, “Corn Chex” neatly written in the corner.

Dude, I thought. You are in the wrong establishment. I must have looked confused, because he took the receipt back. When he returned it, it said, “Corn Chex, 1.49.” “Cost,” he signed – and said, with a thick accent.

I was still confused. The price wasn’t the problem, I thought. I signed, “You bought it already?”

“No,” he signed.

“You can’t buy that here,” I signed back at him. He laughed at me, took back the receipt, and wrote, “Maceys” on it.

At this point, I figured it out. My brother has Autism, and he sometimes brings us scraps of paper with lists of his favorite things: Swedish Fish, M&Ms, names of girls he likes…. I realized this guy was just really excited that Corn Chex were on sale. I looked up at him, and he signed, “My favorite.”

Suddenly it made sense. This wasn’t a question; it was just awkward small talk. “Oh, I see,” I signed. “That is a good price. My favorite is Peanut Butter Crunch.”

He seemed to think that was a fine choice. He introduced himself: his name was David. I gave him my name. He then told me all about his three brothers, which of them were Hearing and which were Deaf, which were “real” brothers and which were step-brothers, in addition to his place in the family (firstborn). He also told me about his ex-girlfriend in Wisconsin, his opinion on Oreos, and how much he liked talking to pregnant women.

By this point, I was actually out of my self-pity shell and enjoying the conversation. There’s something extremely relaxing and low-risk about talking to someone without having to physically verbalize anything. It’s also refreshing to talk with someone who won’t judge you if you change the subject suddenly and almost violently without warning. We discussed quite a few of our favorite foods, and I advised him not to put Arby’s sauce on his Oreos. (He doesn’t; don’t worry. Just milk.)

This whole time, David hadn’t ordered anything. After about ten minutes, a woman approached me and said, “Hey, since you can talk to him – will you ask if I can buy him lunch?” He ordered a number 9 combo, and thanked the woman, who wished him a merry Christmas. By the time his food was ready, his brother had arrived, and the two of them sat down for a few minutes to eat. I eavesdropped while David told an elaborate pantomime about deer hunting. He was a very funny storyteller.

They left after a few minutes, and I finally started eating. By the time I was almost done, David came running back in, got my attention, and asked, “What’s your name? I forgot.”

“My name’s Rachel,” I signed.

“Merry Christmas!” he signed. Then he turned to the manager and said out loud, “Merry Christmas!” while signing it. His speaking voice wasn’t great, so the manager looked at me for a hint.

“Same to you,” I said (and signed). “Merry Christmas!” The manager figured it out and repeated the sentiment. Then David bounced happily out the door, and I finished my meal. I took a pit stop at the restroom, then came out and asked the manager for a water cup.

“That was really nice of you to talk to him,” said the manager as he handed me the cup.

All of the awkward came back, and I didn’t know what to say. “He started it,” I blurted out like a guilty six-year-old, then realizing that didn’t make any sense, I muttered, “Thanks,” and went to fill my water cup. Then I headed out to the car and just sat there for a while, thinking about what the manager had said. Why wouldn’t I have talked to him, I wondered?

Well, if I didn’t know sign. That would’ve made things difficult. So I guess there was that. I was probably the only person in the store who knew ASL. And then it occurred to me that David came and talked to me because I was noticeably pregnant. I was the only in the store who fit that criteria. And that woman wouldn’t have been able to offer to buy him lunch if she hadn’t seen me signing. And then I realized that most people didn’t have any experience carrying on a conversation that had absolutely no rhyme or reason. I might have been the only person in the whole store who had the skill (?) to start a conversation with the price of Corn Chex.

“God,” I said (to God), “Thanks for that. I mean… I’m awkward. But apparently, there are some other awkward people out there and I can still brighten their day.” It made me feel good to know that even when I’m feeling useless and weird, God still knows I want to help. And He can send somebody to help me, too – maybe someone who fits in about as well as I do.

Merry Christmas! ♥

“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? ♦

A Few of the Strange People I Met on Wednesday

I got a job a few weeks ago, working at a day center with Autistic adults. We pick up our clients at their homes, drive them to the day center, and often take them on “field trips” to the community: bowling, trampoline jumping, and such. I’ve heard it’s supposed to be a challenging job, working with people with special needs. Since my only sibling has Downs and Autism, I kind of feel like I’m just being paid to go bowling with friends. Life is good.

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So on Wednesday, we went to Wheeler Farm in Salt Lake. It’s basically a working farm exhibit for small children. Imagine the greatest two-year-old birthday party you’ve ever seen. Ducks. Chickens. Sheep. Horses. Geese that look and sound like they belong in Jurassic Park. (I spent a lot of the time carefully staying between the geese and my clients, just in case. The geese didn’t seem to be aggressive, though.)

And also, there’s a working blacksmith. As in, some guy named Mike with a ponytail and a short biker beard is just chilling there, waiting for groups of toddlers to come watch him get some iron red-hot and make a chain with it.

Mike: “What kind of things can you make with metal?

Kids: “Um, bikes! And nails!”

Mike: “Right! So let me get this hot, and when it gets hot, it’ll get soft, and then I can bend it!” (Bang, bang.) “Now, what does this look like?”

Kids: “A hook!”

Mike: “Yeah! Like, a fishing hook? Or maybe Captain Hook’s hook? Or maybe a metal candy cane? Or a runner on a sled?”

Mike was like a kindergarten teacher, I tell you. The man would be the greatest grandpa in the world. We watched Mike freak out some kids by letting them touch the cooled metal, and he looked like he was just happy to be a celebrity to a one-year-old.

Then Mike looked over at my client, who is nonverbal (doesn’t talk). The client was signing, joking about killing Mike, cutting him up, and cooking him with salt. He would be delicious, he signed. I told him that was gross, and the appropriate response was to say “thank you.” As I encouraged my client to thank the kindly kindergarten blacksmith, Mike looked over, saw my client signing, and signed, “no” at him, telling him he couldn’t eat people. Then he started signing to him, asking if he was going to kill the farm chickens and eat them with salt as well. My client was tickled pink. I was stunned. This blacksmith was bending every stereotype I had in my mind. A signing children’s blacksmith. I wanted to ask if he did birthday parties, but then I thought it would be weird if I asked a complete stranger to come and… smith… for my unborn children’s life events.

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I was even more stunned when, in the afternoon, Ethan and I saw three horses, saddled and packed and dusty, just chilling outside the bar on Center Street in Provo. There was a cowboy outside, tending his horses in the marigolds.

And then we drove to Salt Lake, where three Mormon missionaries (including my brother-in-law) were putting on a rock concert to raise awareness that Mormons have talent and good taste in music. An outreach to the awesome young crowd, I believe. And they were actually pretty awesome.

What a weird, weird, weird Wednesday. ♥

 

Pants Go In, Whales Come Out

My brother Andrew went through a no-pants stage a while ago. At first, he refused to wear them inside the house. Gradually, he started refusing to wear them at all. And when Mom cracked down, he got creative:

All of the pants in the house vanished. At least all of the pants in his size. My parents looked everywhere logical: under the bed, in the closet, in the laundry hamper, behind the hamper – and then started the less logical search: behind the chest freezer, in the fridge, under the garage shelves, in the backyard, inside the piano… no pants. Anywhere.

no_pants2

My mom gave it up as a lost cause. She called me at college to inform me that she was at Wal-Mart with Dad and Andrew, buying an exorbitant amount of pants to replace the wardrobe that had gone missing. The new wardrobe was to be kept in my old room, under lock and key, to make sure that he couldn’t “vanish” more than one pair at a time. Now that his pants were being rented, they became a precious commodity, and he kept better track of them.

Just a few days later, she was on the phone with me when she suddenly said, “Hold on a minute – where did you get those?!” She had turned her back for about 2 minutes. By the time she looked at my brother again, he had removed the new pants, produced one of the old pairs out of thin air, and replaced the new pants with old. The new pants were now missing, never to be seen again.

Now, here’s a switch. Ethan and I were reading through a news post the other day about an ignorant (and malicious) neighbor who had sent a letter to the family of a boy with Autism. I won’t post a link here, because if the letter doesn’t make you mad enough to throw things, you should get your head examined. Anyway, the basic gist was that the neighbor was furious this family would allow their son out in public, because he made the neighbor uncomfortable when he did things that other people don’t. Like making noises without words. The argument was that the kid should be locked up instead of “inflicting” his general appearance on others. (I personally feel like this neighbor should be locked up for being too ugly to “inflict” his or her face on the neighbors – but that’s a different story.)

Anyways. This isn’t about people who hate people. It’s about people with bad English who hate people. Because this particularly ignorant soul made a derisive comment about how this boy was always “whaling” in the front yard. That’s right. Whaling. Like with a harpoon, a boat, and a ship’s captain named Ahab. Whaling. And what Ethan and I want to know is, where did this Autistic boy suddenly come up with a whale – in the front yard – in the middle of landlocked Canada? We were puzzled immensely. “Timmy, where did you get that whale?!” (Timmy wouldn’t say.) Wailing I understand, but if I had a neighbor who managed to go whaling in the front yard, I wouldn’t even be mad. I’d be taking pictures.

“Thar she blows, mateys! In upper Saskatchewan!”

So this morning, we came up with a theory: Autistic kids have a void of some sort that defies time and space. In that void, they can produce or hide whatever they need to. That whale must have come from the same place to whence Andrew’s pants disappeared. It sounds crazy, but it’s the only viable explanation. It explains years of missing pants, car keys, CDs, and uneaten sandwiches (actually, those turned up in the VCR. If you were born after the 80s, go ask your parents. They’ll explain what a VHS tape is.)

Now, we’re on the hunt. We’re just watching and waiting, to see if we can catch him unsuspecting. Because if we can figure out how to use this void, the world is our oyster – or beluga, if we choose to take up front-yard whaling ourselves. Expect to find me in a few years, surrounded by 18 pairs of pants, some men’s briefs that the dog found in the void a few years ago, a collection of great rock music, and most of my life’s savings. Because I’m going after everything that’s disappeared in the past decade or so. And as soon as I find a way in, I’m gonna mine that thing dry. ♦