Sept 30, 2013: Flu…Ewwwww!

Well, after eight days of feeling utterly miserable, I went to the doctor. He congratulated me on being one of the very first cases of influenza they’ve seen this year. Evidently they haven’t even started recording data on flu cases yet because it’s so early in the season. Well, lucky me. There are certainly things I’d rather be first at!

The funny thing is, I always get flu shots for me and the boys right when they start offering them. And when I was at Kaiser with Theo a few days before (for something unrelated—a nasty flare-up of eczema that isn’t clearing), they had all their posters and flyers up saying, “Flu shots available 10/8! Mark your calendar!” Well, gee, that would’ve helped me much more if it was about two weeks prior!

So, truthfully, I didn’t know much about the flu. I always get my flu shot mostly because I don’t want the boys to get sick from me, and my mom’s immune system isn’t terrific, so I worry about her, too. And I guess I just assumed that the flu is pretty much like a cold, only you have a fever with it. So when I said last week that I thought I had the flu, I was basically saying I thought I had some sort of respiratory virus with a fever. Which I did, but it was specifically influenza—which, according to the doctor, is different from the “upper respiratory infections” that people get a lot during the cold/flu season.

So in case you, like me, have no idea what differentiates the flu from another type of respiratory infection, I’ll share what I learned with you. Evidently, the duration of the flu is actually shorter than a lot of respiratory infections—the cough doesn’t tend to hang on for weeks and weeks. (Though mine’s been going for 10 days and counting, so I’m not sure I believe that!) However, the onset is very swift, and the fever is higher. The doctor said if the fever is around 100-ish, it’s likely a respiratory infection of some sort. But if it’s actual influenza, you get a really high fever. (Mine was 103.4 at its worst. I felt like death!) And, he said, it comes on incredibly quickly—he said most people can tell you almost down to the hour when it hit. And that was indeed true for me. I felt kinda sick for a whole day before the fever hit, but it was about 3:00 p.m. last Friday, sitting in the dentist’s chair, that I was just overcome with achiness and shaking so badly from chills that I ended up with sore abdominal muscles for a few days afterward.

So there ya go—my public-service announcement for the week. If you feel flu-ish and you have a really high fever that came on very quickly, go to the doctor. Evidently if you go early on, they can give you medicine. By the time I went on Day 8, the worst was over and he told me to just take Sudafed and wait it out.

By the way, the doctor was shocked that no one else in our house got it, as it’s highly contagious. I’m pretty sure we must’ve had a guardian angel looking over us. Theo and Chris would probably fight it off just fine, like I did, but for Sam, getting the flu could quite possibly result in hospitalization. And I have no idea how Sam didn’t get it, since he’s a total mama’s boy and always crawling on me or wanting to be held, and I was hacking up a lung all over him. Guardian angel, I tell you! And I was rather glad that I’m still breast-feeding him, since perhaps getting my immunities kept him safe, too.

So the flu put quite a crimp in my planned activities for the week. I wasn’t feeling up to volunteering in Theo’s class on Monday, and I missed a free speech and feeding talk at the Down Syndrome Connection on Tuesday. I did manage to muster up enough energy to attend another meeting at the Connection, though! I joined a Medical Outreach Committee, and we had our first meeting on Wednesday night. (Keep in mind that I didn’t know I had the actual flu until Thursday afternoon, so unfortunately I spread my germs at that meeting…and while chaperoning Theo’s field trip the next morning. Yikes!)

So…the Medical Outreach Committee. There’s a big problem with the medical community providing a lot of outdated, negative information to parents who have or are expecting children with Down syndrome. So the head of the Down Syndrome Connection has been pondering for a few years how we can work on this. Thus the committee. And while I don’t have much spare time, this particular cause is really important to me, so I’m going to make time. We’re starting with new parents of babies with Down syndrome—parents who have just welcomed their baby into the world. We’re putting together materials that we want the area hospitals to provide to new parents—but that’s the easy part. The hard part is getting the hospitals to actually provide them. We can print up all the lovely pamphlets we want, but will they give them out? Not without some serious pushing. And honestly, I’m terrible at pushing. But I’m going to try, because I think this is really important. When you welcome a baby with Down syndrome into the world, you don’t know what to expect. It’s confusing. And being given unnecessarily negative or outdated information is not helpful! Seriously, some of the stories I’ve heard are appalling. Our experience wasn’t too bad, all told, but we weren’t really given any information about Down syndrome, and one nurse cheerfully told me, “You know, people with Down syndrome can live to be 25 years old now!” Which made me start bawling with the sudden realization that I would likely outlive my son. It wasn’t until later that I learned she was wrong—the life expectancy for the average person with Down syndrome is now about 60. (So I still might outlive him, but I’ll be too old to even know what’s going on! Kidding…but you get my point.)

So these are the kinds of wrongs we want to right. New parents don’t need to hear things like that. They need current, correct information…and resources. And that’s what we want to provide.

Once we take care of this first goal, we intend to move on to others—providing current, objective information to parents who have just received a prenatal diagnosis, providing education to healthcare providers, etc. But one step at a time. And I’m excited to be part of this committee, even though I’m terrible at pushing. I will learn to push. I will do it for other parents like me, who are handed a beautiful baby and think, “Okay, I love him, but I’m not sure how to care for him! What do I do? How is he different from any other baby? How is he the same?” There are answers, and new parents need to have them.

The other event I managed to attend this week was Theo’s first field trip. In fact, I chaperoned it. And once again gained respect for his teacher, who is seriously the queen of multitasking! I thought I was a good multitasker, but man—she can field questions from 20 five- and six-year-olds at once without batting an eye. I think she may be superhuman.

The field trip was to an art gallery, which I was leery about. I couldn’t imagine the kids really being interested in looking at pictures. As it turns out, they really weren’t—but they muddled through, and the gallery had them do a fun little craft at the end, which I think they really enjoyed. Heck, even Theo enjoyed it, and he usually hates doing crafts.

As it turns out, Theo’s teacher hadn’t planned this field trip—the gallery approached her about coming. And I can’t speak for her, but I have a feeling it may not be a repeated field trip. The gallery was nice and the kids enjoyed the craft, but honestly…being in a “just look, don’t touch!” art gallery is a little tough with kids of that age. They did pretty well, all things considered, but I think it’s because there were a lot of parents to help make sure no sticky fingers were put on artwork and such.

And actually, although some of the art was neat (it was a “home and habitat” exhibit), there was one particular artist that wasn’t really rated G. When the docent took us over to that artist’s section,  another mother and I really blanched—one of the paintings had a bloody JFK on it, along with a swastika on a house. Good heavens! I don’t think any of us wanted to try to explain that to the kids, so we quickly moved along.

Theo later told me, “That field trip wasn’t really my favorite. I was feeling antsy.” Indeed. I couldn’t blame him, and he did really well holding it together. I told him he’d probably enjoy the next field trip much more. I have no idea where it will be, but probably someplace more appropriate than an art gallery.

I have to say, though, I feel good about Theo’s class every time I’m around them. Theo doesn’t seem to love kindergarten—he says it makes him really tired. He tolerates it, but it’s not a great love for him. And that’s fine—I hated school, so I can understand that. As long as he can tolerate it, I’m happy. And I know that he’s actually in a very cool school, and he’d hate it a lot more in some other schools. But I feel really good about it, because when I see him around the other kids, he fits. He’s a little quirky and they seem a bit confused by him sometimes, but they’re nice to him and he’s making some friends. And his behavior doesn’t by any means stand out compared to the other kids. There are some who are quiet and well-mannered all the time, but there are quite a few who, like Theo, require frequent reminders to stay on task and behave appropriately in the classroom. So I’m happy about that. I never expected him to be a model student; I just didn’t want him to stand out as “the bad kid.” And he doesn’t. He fits in beautifully among several other antsy boys and talkative girls. 😉 I can see why the teacher told me that the things she’s working on with him don’t require a separate aide—he’s requiring some help to learn the environment, rules, and expected behavior, but he’s definitely not outside the norm on it. Hooray! I am very proud of the boy!

In other news, I got Sam’s latest developmental report. We get one every six months (sometimes more often for specific assessments), and usually they depress me. But not this time! This time he actually made a lot of progress! Sam will be 20 months old next week, and we know he’s delayed in all areas, so that’s no surprise to us. But this time, his report shows him as not nearly as delayed in some areas as past reports had shown. Hooray!

Specifically, he functions at the level of an 11-month-old cognitively. His language skills are now at about 13 months old (major leap!!). His fine-motor skills are at a 16-month level—that’s hardly any delay at all! His gross-motor skills have fallen behind, at an 11-month level, but that’s only because he’s not walking. When he starts walking, they’ll shoot up to much higher. His personal social skills are at a 17-month level, and he’s particularly strong in adult interaction. His lowest area of functioning is self-care, at a 10-month level. That’s because he doesn’t self-feed (other than fish crackers) and he can’t identify any body parts yet. But he’ll get there….

So, I feel pretty good about his assessment overall. I was thinking about something recently—evidently you’re supposed to “grieve the baby you were supposed to have” when you end up having a child with special needs. Apparently this is very typical. And I’m sure it probably is—I’ve heard so many parents say they went through a period of mourning the baby they didn’t have, all the while loving the one they did. I don’t in any way think that’s a bad thing or an unusual response. However, it wasn’t my response. I never grieved the baby that I expected Sam to be, and I think there are two main reasons for that. One, when I was pregnant and envisioning my baby, I envisioned holding a snuggly newborn. I never thought past that. About as far as I got was thinking, “I’ll have two sons.” I never envisioned his life beyond newborn stage. I’m not the type to plan ahead like that, I guess—which is funny, because I am a planner in pretty much all other areas! But not with my kids. So when Sam was born, I got to hold a snuggly newborn—exactly what I had pictured. So there was no “other baby” to mourn—I got the one I pictured. And I think the other factor was that for a while, we weren’t even sure we’d ever even have a second child. For a while we weren’t sure we wanted one, and then when we did decide to have one, conceiving him didn’t come easily. So Sam is like the icing on the cake—if we’d only ever had Theo, that would’ve been okay. But we got Sam, too, as an added bonus! So we really had no expectations about him—he was, from the moment the pink line appeared on the pregnancy test, a most wonderful, happy surprise.

But even though I never grieved or mourned some baby that never truly existed (because Sam was always Sam, whether I knew it or not), I do sometimes wonder what Sam would’ve been like if he didn’t have Down syndrome. I guess I wonder—not mourn, but wonder—about the baby I didn’t have. But it’s not in grief—quite the opposite, in fact. As Sam as becoming a toddler, he has the most delightful personality. He’s got a temper for sure—he’s definitely exerting his will and expressing displeasure when he doesn’t get his way. On Saturday he threw a mighty tantrum worthy of Theo! But his general personality is sunny and happy, and he’s just absolutely full of love. He is a huge snuggler and just radiates affection. And there’s that old stereotype that “people with Down syndrome are always so happy!” Well, that isn’t true—they get mad just like anyone else (if you’d been at our house Saturday, you would’ve seen that!), and they get sad just like anyone else. But Sam is generally happy. And I sometimes wonder, is it because he has Down syndrome? Or would Sam be a sunny, happy, loving little guy even if he only had 46 chromosomes?

The truth is, I’ll never know. And I don’t need to know. But you know what I think, in my heart? I think it has nothing to do with Down syndrome. I think he’s just a sweet, happy, loving child by nature. Exactly the kind of baby I would’ve wanted if I had spent time dreaming about the personality of the baby I was carrying. There’s no need to grieve some “typical” child that I didn’t have, because I absolutely adore the baby I did have. Whatever factors have played into shaping his little personality, I am crazy about him. We all are. Sam is the great uniter. 🙂

With that, I bid you adieu for the week. I have a crazy-busy work-week, but next weekend is Sam’s Step Up for Down Syndrome walk, so hopefully I’ll have lots of pictures and stories from that! Enjoy your week, all—and stay away from the flu!

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