Feb 16, 2014: Happy Valentine’s Day!

Let’s start with a lovely little Valentine’s Day poem, shall we?

Roses are red,
Violets are blue,
I’ve had a fever and a stuffy head,
And my kids are sick, too!

Surprised to hear this? Of course you’re not. Because here in the Small household, we’re always sick. Or so it seems these past several months. Sigh…

Actually, in my case it’s not as bad as it sounds. I’ve run a fever a couple of nights this week (last night was 100 degrees, for example), but by morning I’m back to normal. Not sure what’s up with that. I don’t love feeling lousy in the evenings, but at least I feel pretty good during the day, except for slightly sore ears. I’m suspicious that the slightly sore ears may become something more, but for the moment I’m taking the “wait and see” approach.

The kiddos, however, are definitely sick. Again. Theo was out of school two days this week…which really didn’t make him the least bit sad. In fact, he lobbied to stay out longer than that. When his attempt didn’t work and I said simply, “I’m sorry, but you have to go to school,” he politely but firmly said, “No.” As you can imagine, Mama won that argument. But ooooh, I’m in for it, aren’t I?! Only in kindergarten, and he already doesn’t want to go to school. Oh, Theo…you’ve got a long way to go. (Side note: I do wonder if someday we’ll end up doing homeschool so he can study more of what interests him. He loves to learn, but he’s not so fond of school. I know that he struggles with writing, so that’s part of why he avoids it, but I also wonder if he gets bored and doesn’t really put in much effort. Every week he brings home a sight-word reading list, and he masters it on the first or second try at home. But then he goes back to school and misses some when he’s tested…leading me to believe he’s just not really paying attention at school. Hmmm…)

Anyway, Theo had a fever and a bit of a cough, so I kept him out of school for two days. By Friday his fever was gone, so he went back to school. But Saturday evening, I saw him touch his ear once, and I thought, “Uh oh…” Sure enough, at 10:30 on Saturday night, he came downstairs crying that his ear hurt. I checked with our little handy-dandy ear scanner (excellent gadget from Grandma Diane, the ultimate gadget junkie!), and sure enough, it showed fluid in one ear. We gave him some Motrin and a warm pad for his ear and sent him back to bed. The Motrin apparently wore off around 5:00 this morning, and he was up in pain again. More Motrin…and I checked his ears again, and both showed definite fluid and “Call doctor” on our little gadget.

Meanwhile, Sam had picked up whatever bug Theo had, and I just knew it would turn into an ear infection—largely because I wasn’t sure the previous ear infection had ever cleared. (The endocrinologist looked at his ears when we were in to see her and said his ear was still red, despite being on seven days of antibiotics. She said it would hopefully clear after the final three days of antibiotics, but I should bring him in for a recheck after he finished, just to be sure. I hadn’t yet gotten around to doing that, but I was suspicious.) Sam was fussy and wakeful Saturday night, too, with a fever that would climb pretty quickly whenever his Motrin wore off. Sigh…

Lucky for us, our medical group has Sunday appointments for just such occasions. And our own pediatrician happened to be the doctor on call! So we got both boys in on Sunday morning, and she confirmed what I had expected: Both boys had double ear infections. She described both of their ears as “red as ripe strawberries inside.” My poor guys!

So, Theo gets his second round of antibiotics in two months. Somehow, he survived his first five years never needing antibiotics even once. And after turning five, he has been on them three times already. Argh!

And Sam gets his fourth round of antibiotics since December. Awesome. NOT. I am not pleased about this, but there’s not a lot we can do. If this round doesn’t work, they’ll do an injectable antibiotic that’s stronger. And, she told me we need to take Sam back to his ENT to have his tubes checked, because they’re not draining the fluid like they should. They are still in there (apparently they’re blue, so the doctor can see them when she looks at his eardrum), but they’re not doing their job very well. Poop. I swear, my poor kid is sick more than he’s healthy these days!

So anyway…we had one week of good health. One week. I’m ready for us all to be healthy for more than a week!

But let’s talk of cheerier things! Taxes! Are they cheery? Well, not really, but they also weren’t awful. Basically, if we throw several thousand dollars into my retirement account, we’ll break even on taxes and won’t owe anything. So, we’ll do that. Better to pay ourselves than to pay the IRS, right? Still, having to come up with several thousand dollars unfortunately means our travel budget is once again meager. We had been hoping to head back East this summer, but it looks like that’s not in the cards. Poop. Oh well, there’s always next year. And at least the taxes weren’t awful this year, so we can do a week at the beach or something. Can’t complain about that, right?!

And on the cheery side of things, Theo had a ball with my mom while we got our taxes done! He was still not feeling 100%, but they had lunch together, took my mom’s dog for a walk, and Theo played on the exercise equipment in the little park in my mom’s community, which he’s been talking about ever since. My mom is watching him again in two weeks, when we go up there to get our will and Sam’s trust finalized, and Theo is just sure they need to go exercise again!

The next day was Valentine’s Day, and it actually marks nine years for me and Chris as an official couple. So what did we do to commemorate this momentous occasion? Take the van in to get a brake light replaced. Feel the romance!! Actually, though, we ordered pizza after the boys were in bed, and we watched Breaking Bad. So it was a fun, if simple, night!

On Saturday morning, Theo seemed healthy and fine, and Sam had a bit of a fever, but Sam always has a fever. (Okay, not always, but at least once a week he runs a slight fever for some unknown reason—even when he’s not busy getting sick all the time. So we don’t worry much about a slight fever with him. If he seems happy and lively, we go about our normal business.) Given that both boys were cheery and seemed to have a lot of energy, we decided a little day trip was in order. We went to San Francisco to check out the Randall Museum, which I’d heard good things about. It was pretty neat, actually. It’s completely free (they rely on donations), so it’s a little…rustic. But kids never mind that, and mine were no exception. Sam had a good time in the toddler playroom, pushing around trucks and playing with a helicopter. And Theo had a grand time in a re-creation of a 1906 earthquake shelter. There was a little girl his age in there, and the two of them played for quite a while.

Funny thing is, I would not have enjoyed playing with the girl—she was quite bossy! But Theo didn’t seem to mind in the least. Chris did, though. He actually took Sam and went to look at the animals because he was so appalled by the girl’s mother’s utter lack of parenting, and he was getting tired of biting his lip! I’m amused by this because neither Chris nor I is the type to criticize anyone else’s parenting—certainly not to their face! We have, like anyone, talked later between the two of us about parenting things we’ve disagreed with, but neither one of us has ever criticized anyone else’s parenting openly. But this woman was so utterly ineffective, and her daughter was (not surprisingly) acting like such a brat that it was very hard not to say something. We were both afraid Theo would take cues from the little girl and start misbehaving, but much to our happiness, he actually behaved exactly as he knows we expect from him, instead of copying the little girl. There was a sign in the little building saying that children were welcome to touch things, but that some of the furniture was 100 years old, so please be gentle with it. And this girl was jumping on the bed! Standing on the back of the child’s rocking chair and rocking it as hard as she could. Taking glass framed pictures down and racing around with them, seemingly without a care of what might happen if she dropped them. Banging around an old washboard with no thought to the fact that she might break it. Seriously…it was incredible. And when Theo said something to her about, “Oh, I don’t think we should touch those glass pictures,” her mother jumped in and said, “We touch everything here. Why would you say not to?!” Anyway, I was really proud to see that Theo enjoyed playing with the things in the shelter but played with them gently, as we had pointed out that the sign requested. Nice to know that he does listen to us every now and again!

In other news, I finished the first draft of my second book—a spotlight on sportswriter and children’s author Mike Lupica. It’s a 50-page biography written for a fourth- and fifth-grade audience. Honestly, it was much harder for me to write than the Malala book for two reasons: First, there just isn’t as much written about Lupica as there is about Malala, so it was hard to come up with 50 pages’ worth of material. And second, the Malala book was for a high-school audience, so it was easy for me to find the right tone. But I’m not used to writing for ten-year-olds, and it took me a few tries to get an appropriate tone and level of writing! It was a good learning experience, for sure. I’m hoping the publisher taps me to do more writing, as I’m really enjoying it.

Another thing I’m quite enjoying is piano lessons! Theo has unfortunately missed a couple (due to illness, among other things), but I’ve been able to go to all of mine, and I’m loving them! Our teacher is excited that I can read simple music, because most of her students are kids just beginning to learn, so she’s brought me a lot of books with classical songs to start working on. I’m working on Fur Elise and the Sleeping Beauty Waltz, and I hope to start Waltz of the Flowers next week. Only problem is finding time to practice, because a certain tiny friend likes to come thump on the piano keys while I’m playing, so I have to wait for Chris to get home to watch the boys before I can practice. And then I’m supposed to be working, so…I just need more hours in the day is all.

Speaking of more hours in the day—and obligations and stress and all that good stuff, I’ve noticed something interesting that I wanted to blog about, because it’s been on my mind. As I think I’ve mentioned, I’m involved in some online groups related to Down syndrome. Probably my favorite is the Rockin’ Moms group, because it’s just an awesome group of ladies who have kids with DS who were all born in 2012 or 2013, so they’re all close to the same age as Sam. (We have a couple who had kids in late 2011, too, but Sam is among the oldest in the group, since he’s an early 2012 birthday.) Anyway, I don’t remember if it was in that group or another that someone posted a message asking what kind of feedback people who are planning to have another child have gotten when they’ve mentioned their plans. I clicked on the message to read the replies because I was curious. And so many of the people commented that they had gotten largely negative responses from friends and family when they announced their plan to have another child after having one with DS.

Because the moms in my group all have kids around roughly the same age, and they’re all between one and two years old, it’s not surprising that many are now considering having another child. These days, it seems like roughly two years is the magic number for kid spacing, for whatever reason—some people want siblings two years apart, and some (like we did) just seem to start thinking about it when their older child is two. But whatever the reason, a lot of them are starting to think about more kids. And I couldn’t believe how many said they were facing a lot of negative commentary from people.

Or really, maybe I can. Chris and I have made no secret of the fact that we’re undecided as to whether we’ll have another child. It’s a topic we revisit every few months, and it’s one we’ll keep revisiting until we make a decision one way or the other. We’re delighted with our two boys, but both of us would love to have a girl in the mix too. Do we want that enough to go ahead and plan for a third child? We’re not sure yet. I know that for both of us, if a little girl magically dropped into our household, we’d be thrilled. But that’s a lot different than deciding to undertake the massive emotional, financial, and practical endeavor that is adoption—and that’s what we’d have to do, since we can’t have any more biological children.

But when we’ve casually mentioned the topic to others, we’ve gotten mixed responses. Some people seem genuinely thrilled at the possibility, others seem apprehensive, and some even outright say it’s a bad idea. Why a bad idea? Because, apparently, we have too much on our plate already.

So that’s the part I want to talk about, because that’s exactly the response that these other moms of kids with DS seem to be getting as well. And here’s what I think about it: I think an outsider looking in thinks it’s too much—raising a child with special needs must be some Herculean undertaking, and how could anyone in their right mind consider adding to their stress? And really, I don’t think the naysayers mean badly—I think they truly believe that our stress level is somehow greater than that of the average family.

But here’s what I think: I think we all adapt to whatever stress is in our lives. We stress about whatever the main stressor is, and we become accustomed to our level of stress so that it’s normal for us. For example, before I was married, I stressed about work and school—deadlines, grades, doing well at both, etc. After I got married and had Theo, I stressed about raising a high-needs baby. And yes, during the transition period of becoming a mother, it was a hard couple of months. But after a while, I adapted to the new stress of parenting, and I set aside much of my stress about work. (By that time I was no longer in school.) So I still stressed about things, like anyone does, but my stress shifted from mostly work-related stress to mostly parenting stress. And once I adjusted to being a parent, it was no more stressful than my previous life—it was just different stress. And I handled it, as I handle all stress—and as we all do.

And then along came Sam. And right on the heels of Sam’s birth diagnosis, Theo’s diagnosis with autism spectrum disorder. And yes, it was a stressful month or two while we learned all about what Sam’s diagnosis would mean and we worked to get Theo set up in a better situation for him. But when the dust settled, we were left with very normal stresses: raising two young boys while balancing jobs. Did the fact that they have special needs mean that our stress was more than that of any young family making the transition from one child to two? Actually, not really. Sam’s diagnosis means more doctor appointments and more therapy appointments, but they become a part of life. Theo’s diagnosis means being very careful about what schooling environment we choose for him—but knowing me, I would’ve been excessively careful about that regardless!

So here we are today, not really any more stressed than any young parents. The bottom line is, parenting is stressful. It’s wonderful and amazing and full of joy, but it’s also stressful. You show me one set of parents with a five-year-old and a two-year-old that doesn’t feel stressed sometimes, and I’ll personally give you the very last dollar out of my pocket! We’re all stressed in someway or another; it’s just what we stress about that differs. I’ve seen parents of typical kids who stress when their kid gets in trouble once in school. My kid gets disciplined on a fairly regular basis, and I don’t stress about it any more than the parent who freaks because little Johnny had to sit on the bench one day at recess. It’s just part of our daily life, and we’ve become accustomed to it. Theo works as hard as he can to regulate his behavior at school, and we know that. So, like any parents, we celebrate the good days and move on past the not-so-good ones, hopefully learning from them.

I’ve seen parents of typical babies who stress because their kid isn’t saying any words by the time they’re 14 months. Do I stress about that? Nope. Instead, I stress because Sam is perpetually under the weather.

As our kids get older, I expect I’ll see parents of typical kids stressing that Junior isn’t going to get into XYZ University. Will I stress about that with Sam? Nope. Instead, I’ll stress about whether he’ll be able to get a job that he finds fulfilling, given the limited work opportunities for people with disabilities. (As an aside, don’t miss this article! It’s awesome—I would love to see something like this in America!)

So you see what I mean? We all stress about our kids; it’s just a matter of what we stress about. And unless you’re talking about a child with medical problems (which I think must be a whole different ballgame—I’m thankful we don’t have to face that at this point in our lives!), I don’t think any parent’s stress is any more or any less than any other parent’s.

And the same goes for joys, really—we all find joy in our children and our families, but it’s for different reasons. One parent might be thrilled when her child is accepted to XYZ University, whereas another parent is thrilled when her child finds passion in a career as a chef, whereas another parent might be thrilled when her child travels the world, and still another parent might be thrilled when her child learns enough self-help skills to be able to live independently and happily.

A good friend of mine had a blog post a while back—I wish I could find it and link to it. She has three young children, ages five and under, and she frequently gets the, “Wow, you really have your hands full!” comment. Her blog was basically saying, “I’m not sure why my life looks so hard to you—it’s manageable for me, which is all that matters.” And she also pointed out that she wished people would not make that kind of comment in front of her kids, because she was afraid her kids would feel as if they were some sort of burden that made her life hard if they heard it. It was an excellent point, I thought—and indeed I have been guilty of making the “Wow, you’ve got your hands full!” kinds of comments.

So I suppose my long-winded point is, the life of a special-needs parent isn’t necessarily as hard as you might think. For a great many of us, we adjust to a new situation, and life goes on as always—with some stress, some tears, and a lot of joy. And that’s any life, right? It’s a package deal.

So if Chris and I ever take the plunge and decide to add #3 to the mix, no need to tell us we’re nuts. We are nuts, but not for considering a third. We’re nuts because life is just a little bit more fun if you embrace your inner nut!

Let me leave you with a sample of joy. Sam is two. Many people are thrilled when their two-year-old learns to potty-train. We’re not at that stage yet, so I have a different thrill—no more and no less thrilling to me than potty-training is to little Janie’s mom. I hereby give you Sam, doing a hand-gestures rendition of “Itsy Bitsy Spider.” Find your inner nut, embrace your joy, and enjoy this clip. 🙂

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