Nov 3, 2013: Boo!

Well, this blog title has two meanings. First, boo for Halloween! Because Halloween is fun and spooky and one of my favorite holidays. So boo! But more about Halloween in a moment… The second meaning of boo is boo to illness! Apparently I spoke too soon last week when I said that we were sick again, but it was minor this time. Um…not so much minor. Nothing major in the grand scheme of things, but not as minor as I thought.

I didn’t feel great last Sunday—scratchy throat and general cold symptoms, but nothing awful. And Sam had been coughing a bit for a few days, but also nothing awful. No runny nose, not even coughing all that much, and just some mild fussiness. No biggie, right? Well, we put him to bed Sunday night, and he woke up at 10 p.m. to nurse. Nothing unusual about that—he typically does. But I put him back down, and he woke up coughing and crying ten minutes later. He sounded slightly croupy, so I told Chris I might be doing the steamy-shower thing if it got worse. The next 4.5 hours were…lovely. Every time I put Sam back down, he’d wake up coughing and crying in 10 minutes. Okay, we’ll try bringing him into bed with me. Same thing—woke every 10 minutes crying and coughing. The cough got progressively more croupy-sounding, so at 11:30 I woke Chris and asked him to clean and set up the humidifier while I took Sam in the little bathroom, turned on the shower, and sat in the steam. Whenever Theo had a croupy cough, a little shower steam was all it took to clear his airways. Simple, I figured…

Only not. After 20 minutes or so in the steamy bathroom, when the hot water was running out and thus we weren’t getting much steam anymore, I took Sam back in the bedroom, nursed him again, and tried to put him down. He woke up crying and coughing. I brought him into bed, propped myself up with pillows, and held him upright to sleep, figuring at least he could sleep, even if I didn’t. Didn’t work—he was still awake every few minutes, coughing and crying. And getting hotter. He hadn’t had a fever before I took him in the bathroom, but he pretty quickly spiked a fever in the wee hours of the morning, and his breathing started getting pretty rapid. And I got nervous. At 1:30 in the morning, I was on the phone with Kaiser, trying to figure out when croup turns into something that needs to be treated in the hospital. As it turns out, we were okay. I gave him Motrin to bring the fever down, and the nurse had me count his respirations per minute and turn on the light to see whether he was turning blue. Although his respirations were high, they weren’t high enough to necessitate a trip to the ER, thank god. And his lips were still pink, so that was good. She instructed me to take him out in the night air (it was freezing!) and give him a little honey mixed with water to try to calm the coughing. Well, he won’t drink water, so I just gave him a little honey on a spoon…and surprisingly, he actually swallowed a small amount. That plus the Motrin plus the trip out in the frigid night seemed to ease his breathing and coughing enough for him to fall into a restless sleep at 2:30 a.m. He was up for the day at 5:30 a.m., but at least we got three hours of sleep. Yawn…

Chris came in to say goodbye before leaving for work, and I told him I wasn’t feeling well, but that I thought it was probably from being up most of the night with Sam. Um…not so much. Sam and I took Theo to school, then I took Sam in to see the doctor. By the time I got home from that, I was running a fever of over 100 degrees…again! I thought I got my fever quota out of the way with the flu, but apparently not. I had the chills and was aching and feeling pretty awful. Not nearly as bad as with the flu, but still bad enough that all I wanted to do was climb into a warm bed and sleep…but I couldn’t. Yuck. What timing!

Sam’s doctor visit was relatively uneventful. He finally reached 20 pounds—at almost 21 months of age. Tiny but mighty! (Theo reached 20 pounds before he was a year old, which is pretty typical—he was an average-size kid.) The doctor could still hear the croup in Sam’s breathing but said she didn’t hear any pneumonia. However, she didn’t like the looks of a rash on him, so she sent us for bloodwork. I know all too well what that’s for—looking for leukemia. Sam seems to be prone to the petechial rash that can indicate leukemia, though it can also come for any number of other reasons. So this is not our first time with bloodwork to check for leukemia. Nevertheless, it unnerves me every time. Luckily, the results generally come back the same day, and this week was no exception—I knew the same day that the results were fine. Slightly unusual, as they always are, but not indicative of leukemia. Thank god. I don’t believe I will ever get used to the stress of that. Ugh.

The doctor also gave Sam a dose of steroids to ease the swelling in his airways, so he wouldn’t have another night of difficulty breathing. This was a good thing and definitely worked, but the downside was that they made him cranky!! Ah well, at least he could breathe; he just wasn’t particularly fun to be around the next day!

As long as we’re on the subject of doctors, I had my annual dermatology check this week, and I’m very excited to report that I only had to have one biopsy done! Woohoo! Hopefully it will come back clear. So far, they always have. As it turns out, I’m an exceptionally mole-y person. I hate that. I’m not a vain person, but I do not like my moles. They’re gross. Alas, there’s not much I can do about them. However, because so many of them are irregular, I usually have to have a couple a year biopsied—and they pretty much always come back “atypical, but not cancerous.” I’m assuming this one will be the same. Let’s hope, anyway. I had to laugh, though—my ever-cheerful dermatologist tried to sell me on the fact that it’s actually a good thing I have so many moles! Something along the lines of, “Well, if you didn’t have so many, it would be worrisome when you had an unusual one. But since you have so many and this is common for you, it’s not really cause for worry, right?” Well…okay. I suppose that’s one way to look at it. I’ve never found them particularly charming, but okay….

But anyway! Back to Halloween. Sam and I were both feeling human again by Halloween, which is cool because I love Halloween! This year, Theo was invited to go trick-or-treating with one of his friends from his preschool, who we just found out lives right near us. His best pal, Gavin, was going too, along with a few other kids from his preschool. All in all, it was a lot of fun. We had a few tense early moments where Theo was darting off into the street and then getting a real attitude when we insisted he walk with us for a few minutes, but he settled down and decided to cooperate rather than go home (yes, I threatened—and I would’ve followed through!), and we ended up having a lot of fun. He actually didn’t trick-or-treat much; he and Gavin preferred to dance at the house in our neighborhood that was playing loud rock music and had disco lights all over the driveway!

Sam and Theo were both Elvis, by the way. I saw the baby Elvis costume and had to have it for Sam, and then I decided it would be fun to dress Theo the same. And given that Theo really likes Elvis and all things rock music, it was a very easy sell. The pictures don’t do it justice—he looked adorable in his costume, as did Sam.

Speaking of pictures, Theo surprised the heck out of me by bringing home an awesome school picture! Usually posed pictures of Theo are…interesting. He either grimaces or makes a “cheese” face or looks like a deer in the headlights. So I had very low expectations for his kindergarten picture, and consequently I pre-ordered the smallest possible package. But lo and behold, his picture is adorable! It totally looks like him to me, right down to the little mischievous smirk. I absolutely love it! I think I will order a few more. 🙂

Our weekend consisted of one low-key day and one adventurous day. On Saturday, we stuck close to home—after soccer we went out to a pizza lunch (at a place that has good cheeseless pizza slices for Theo) and then to a park. When we came home, I made homemade pumpkin pie out of fresh pumpkins we had gotten in our CSA box. Truthfully, I hate pumpkin pie, but I didn’t want to waste the pumpkins. And a friend/former boss had sworn to me that if I used her granny’s recipe, I would like the pie. And what do you know—it was good pie! Chris loved it, but he likes pumpkin pie anyway. And I really liked it, too! I need to play with the crust—I made a coconut-flour crust to avoid gluten, and it was slightly weird. But the filling was absolutely delicious, if I do say so myself! I think I’m going to use the leftover filling and bake our neighbor a pie tomorrow. I’m told she loves pumpkin pie, and I hate to see the extra filling go to waste.

On Sunday we went to Gilroy Gardens, which is a kids’ amusement park set in a botanical garden. I’ve wanted to go for years, but we never have. It’s a 90-minute drive and rather pricey, plus hot. But we had a mega-discount coupon from Theo’s school, and the fall weather was lovely, and the boys got us up very early (4:55 a.m. for Sam…ACK!) thanks to daylight savings ending, so we decided we’d give it a whirl. And what fun! We spent about five hours there, riding rides, having lunch, and watching a cheesy little show, plus going on the playground. Theo loved it and keeps talking about wanting to go back! He is definitely my son—his favorite ride was the fastest roller coaster in the park, and he insisted that we should go on it four times in a row. Truly, it was a fun coaster, so we were happy to oblige, trading off with Sam while the other one went on the coaster with Theo. (For those who’ve been to Disneyland, it was along the lines of Thunder Mountain—small enough for a kid Theo’s age, but still fast enough and exciting enough to be fun for adults, too. Theo shrieked in absolute glee at the fastest parts!)

It’s a really neat park, actually, with enough trees that I suspect it’s kept fairly cool and shady even in the hot summer. We’ll definitely go back! And it’s neat to see the “circus trees.” I have a feeling this may intrigue my aunt and uncle, so here’s a link to the circus trees (https://www.gilroygardens.org/things-to-do/circus-trees) as well as one to the gardens (https://www.gilroygardens.org/things-to-do/majestic-gardens).

It’s November now, so we’ve officially wrapped up Down Syndrome Awareness month (and you’ll see the last few kiddos I profiled in the album this week). But before my month of spreading awareness truly draws to a close, I wanted to talk about advocacy—specifically, why I advocate. Because I think people may wonder—obviously, I have plenty to do raising Sam and Theo and working part-time, so why do I spend time advocating, too?

A lot of it boils down to one saying that really rings true for me: “Be the change you want to see in the world.” I love that saying. Because there is change I want to see in the world, and I don’t think I can exactly complain about it not happening if I don’t step out of my comfortable little life and advocate for it.

Honestly, there is a lot of change I want to see in the world, but I have to pick my battles. I don’t have endless time or resources, after all. So what’s most important to me? Acceptance for my boys—both of them. I want to see a world where difference isn’t a big deal. People talk about celebrating difference, and that is great…but I don’t necessarily need it celebrated, I just need it not to be an issue, if that makes sense. I don’t need Sam held in higher esteem just because he has an extra chromosome, nor do I need Theo held in higher esteem because his brain processes things a little differently from many people’s. But what I do want is for them both to be accepted by others and not set apart because neither is the sort of typical, All-American boy.

It’s a little easier to imagine that Theo will achieve that—his differences are not terribly noticeable much of the time. And as he gets older, they get even less noticeable. I advocate for Theo, but it’s to a lesser extent because there’s not much I need to advocate for him. He’s in a mainstream classroom now and doing well. His teacher treats him just like any other student, and he’s thriving. His classmates seem to treat him as one of them, although he hasn’t made any real connections yet. (He gets along with all of them, but he doesn’t seem to play with any of them. I’m not too worried about that, though. He seems to like them well enough, and they seem to like him, so it’s all good.) And frankly, if I spent a lot of time loudly advocating for Theo, I’d just be underscoring that he’s somehow different from the rest, which is the last thing I want to do! So I advocate for him when he needs it, and I leave it alone when everything is moving along smoothly, as it is now.

But it’s a little different with Sam. As I’ve said on this blog before, the very first thought that crossed my mind when the doctor told me they suspected Down syndrome was a crushing feeling of, “Oh my god, I just brought this beautiful baby into a world that is going to be cruel to him!” I felt terrible about that. Because, let’s face it, being born with Down syndrome is pretty much being born with a bit of a target on you. So far, we’ve been lucky—our experiences have been almost all positive. We have a fantastic support system in both of our families and our friends—people adore Sam. (Honestly, I sometimes feel a bit bad for Theo because people are so crazy about Sam that poor Theo gets left by the wayside sometimes! It’s great for Sam to be so loved, but I hate to see Theo feel like chopped liver….) But I’m not naïve enough to think that we’re always going to exist in this happy little bubble where everyone loves Sam and protects him. It just won’t always be true. I’m quite sure he will face bullies somewhere along the way in school, but perhaps even worse than that, he will face prejudice as an adult.

I’ve read and heard a lot about what it’s like for adults with Down syndrome out in the world. Painfully low wages. Unfulfilling jobs. No job, despite wanting to work. Yes, there people who find success—the ones we hear about in the news. The man in Albuquerque who, with his parents, owns and runs a successful restaurant. The Kindermusik teacher. The lobbyist, for heaven’s sake! But for every “success story,” there are hundreds of adults with DS who are just eking their way through. And some are happy with what they’re doing, which is great. But others are living in less-than-great conditions, unable to make a better living because the opportunities for them are just very, very scarce.

We like to think that it’s all about inclusion now for people with Down syndrome, but the truth is that we really haven’t reached full inclusion yet. To have your child with DS fully included in a mainstream classroom, you have to really, really fight for it. You can do it—the school district has to work with you. But it doesn’t come easily, I’m told. And it doesn’t get any easier when you’re talking about trying to help an adult with DS find a way into the working world. For just one example, here’s a blog post I read this week: http://myshtub.blogspot.com/2013/10/im-coming-my-friend.html. It’s sad, isn’t it? John, who the blogger talks about, is supposedly included in the workforce—but he’s really not. He’s scolded every time he attempts to so much as say hello to anyone. That’s not inclusion. That’s having a token person with a disability in your establishment. (The blogger doesn’t fault Old Navy, nor do I. Truly, they probably don’t understand that it’s not inclusion when there’s unnecessary segregation. Honestly, before I had a child with a developmental disability, I probably wouldn’t have seen the distinction either.)

I want better for Sam. I won’t always be here to protect him and look out for his best interests, so I need to do my part to try to make the world a more inclusive place for him and others like him, who aren’t quite what our society considers mainstream or typical. Truthfully, I know my voice is a very small one in a very big world. But if I don’t try, there will never be change. I cannot expect the world to change if I’m not willing to put myself out there and say, “Hey, this isn’t right. This needs to change. What can we do to change it?” My voice may never be heard, but I at least need to try to make it heard. I need to someday go to my grave knowing that I did everything I could to be the change I wanted to see in the world.

I told Chris today that I planned to write a bit about why I advocate, and he said, “I hope you never think less of me because I don’t. It’s just not my personality. It’s not that I don’t agree with what you do, but it’s just not me.” I assured him that I don’t think less of him—that every couple needs one noisy person, and in ours that’s me. 😉 But I have to say that he doesn’t give himself enough credit. Sometimes he is the change I want to see in the world. I leave you with a very short story about Chris, who probably doesn’t even remember this day, but I do…

The day before Theo started kindergarten, we wanted to do something special with him. Theo loves to ride BART (our transit system), so we took BART from Pleasant Hill to Walnut Creek to go to Target. It was a five-minute ride and would’ve been easily driven, but he was tickled pink. We went to Target and then walked back to the BART station. A homeless man was sitting on the steps. I had Sam strapped in the Ergo and was walking a couple steps ahead of Chris, who had Theo by the hand. I gave a quick half-smile to the homeless man as I walked past, but I didn’t say anything. Theo said, “Hey, why is that man just sitting there?” Chris replied with our standard response to Theo when he blurts out a question that might make someone feel uncomfortable: “Theo, why don’t you say hello?” I turned around to see Theo look at the man and say, “Hi.” The man gave him a huge smile and said, “Hello,” then said to me and Chris, “That’s a very good boy you have there!” The tone in which he said it made clear that he thought highly of Theo for speaking to him, when so many (me included!) walked past without saying a word. In that second, I felt lousy about myself for walking right by…and immensely impressed by Chris, who hadn’t given a second thought to the man being rather disheveled and unkempt when he encouraged Theo to speak to him as he would any person. In that moment, he treated the man with dignity and humanity, which is something I should’ve done too.

So there you go. I’d like to think I’m the voice for the underdog here, but sometimes I need to be reminded of how to do that by my “I hope you don’t think less of me because I’m not an advocate” husband. We are both being the change we’d like to see in the world, even if I’m the noisier one about it. 🙂

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