Wes is usually fairly easy to take care of, but this last week has been tough. He hasn’t been feeling well. Part of it, I’m sure, has to do with the two molars coming in on top, and the two or three teeth cutting through in the front. Last week he had a fever one night, and seemed to develop a head cold, which also may have been related to teething. On top of all this, we’re finishing our basement and sometimes it’s just plain loud and distracting to be home during construction. He hasn’t liked the commotion, and we end up sequestered in a single room upstairs, as far from the noise as we can get.

He has turned from a generally happy kid to the kid who whines/cries/says “no” all the time. And I mean All. The. Time. Every day I’m exhausted early in the day, just trying to find ways to keep him happy. I used to have time to do non-Wesley related things, like the dishes, or folding laundry, or getting material ready to teach in my aerobics classes, but not anymore. All day, every day has been focused on keeping him reasonably happy, and therefore keeping my own sanity palpable.

But he still has these moments where you remember that you love him. Like last night when I was changing him for bedtime. I was at the end of my rope and, frankly, ready to dump him into bed and say goodbye for a good eleven hours. As I was struggling to get him to hold still long enough to put on a clean diaper I said, “Do you want to sing a song?” Instantly he stopped squirming and looked up at me and made the sign for “music.” So I said, “Get out your turtle,” and I made the sign for turtle, and he made his own version of the sign, and we sang about Tiny Tim the turtle who swam in the bathtub, ate all the soap, and ended up with a bubble in his throat. The whole time Wesley was rapt, engaged, and doing the song’s finger plays with me. And I managed to get his diaper changed.

I’m happy to report that in the last couple of days he’s been less whiny. I don’t hear “no” every other second. He’s been happier. His teeth still bother him but he’s been more bearable to be around. He still gets into trouble, though, like yesterday when I left him alone while he was drinking a bottle so I could change my clothes. When I came back I found him sitting on the couch, unloading the credit and ID cards from my wallet with a pile of coins beside him and a dime and a nickel in his mouth.

Today I took him to a few lighting stores to get some ideas for sconces in our basement. By the time we hit the third store Wes was winding down for a nap. He gets a little harder to manage the more tired he gets. The store was empty except for us and the lady helping us. She was really nice and didn’t mind Wesley flipping through the sample books or touching the lights on the display. She actually had a hard time keeping her eyes off him, and I worried Wes was making her nervous. But then she said that her first baby, born over thirty years ago, was a boy with Down syndrome. She was only about twenty at the time. She told me how much she loved her son Cole and how precious he was to the family. He was strong and healthy like Wes is, and she had been assured her son would be able to attend school and live a fairly mainstreamed life (which, thirty years ago, was not the typical reality for kids with Down syndrome). When Cole was 2 1/2 (Wes’s age) he was diagnosed with leukemia, and he died a year later. (Kids with DS are at a higher risk for leukemia, and I admit it’s one of my worst fears for Wes.)

She said that some people had told her (I guess trying to ease her loss) that it was better for him to have died than to have lived with Down syndrome, but we both agreed that those people were idiots. She told me a little more about him and how positively he affected her family, and when it was time for us to go she said, “Oh, he’s just so precious, I just want to hug him.” I told her she could, so she scooped Wes into her arms and gave him a big, long squeeze.

And then I got to take my son back into my own arms and buckle him into the car seat and drive him home and think about how lucky I am every day–even whiny days–to have Wesley and be his mom.

Wes is 2 1/2 and just started social laughing. He’ll laugh if he hears laughing, even if he doesn’t know why we’re laughing. Sometimes he’ll laugh spontaneously, just because he thinks he’s funny.

Here we’re watching The Dick Van Dyke Show together.

Yesterday I went to a special Mother’s Day brunch for moms in my county who have kids with Down syndrome. They served us a catered breakfast, which was nice, but the best part was that I didn’t have to bring Wesley. Sometimes it’s nice to enjoy a couple hours hassle-free, not needing to expend the energy required to keep a handle on a busy two-year-old.

I sat with other moms and we chatted about our kids. Our topics of conversation are different than moms would have in other circles. We get updates about the kids’ medical challenges, compare experiences with therapists, and, for younger moms like me, pick up tips about things to perhaps anticipate in the future. One thing that kept coming up was the kids’ propensity to run away. I had heard about DS kids getting out of the house without the parents’ knowledge before, but I didn’t realize it was so common. Every single mom I spoke with whose DS kid was big enough to open the front door has dealt with their kid running away. One mom found her nine-year-old at their neighbor’s empty house, playing. She had let herself in through the backyard. Another mom opened her door to find a policeman with her four-year-old son. I’m not sure she even realized he was gone, but a neighbor a few streets over had called in to report the boy riding his tricycle down the middle of the road. The boy wouldn’t get in the car with the officer, so the policeman followed him home in the car while he pedaled his trike. And the stories went on.

We talked about speech development. It’s interesting to hear how the older kids are doing with speech when my own kid is still so young. I’m curious sometimes how Wes will turn out. I sat with another mom whose son is only two weeks older than Wesley, and we both agreed that our kids seem really smart and able to absorb information (mostly). It’s the communicating back part that’s tricky. John and I have been listening to Wes “talk” and we hear sounds that he says over and over, which apparently mean something to him, but we have a hard time knowing what he’s saying. He will even say phrases, but you have to listen carefully because his sounds are squished together and not clear. Like, he says “idahit” for “I got it” when he retrieves a ball. It took us a while to realize that this was purposeful speech.

We had a guest speaker who specializes in behavioral problems with kids. His point was mainly to take care of yourself as a mom–especially as a mom with a special needs kid. I’m sure he wasn’t trying to be morbid, but he cited several instances of moms who tried to do everything for their needy kids and ended up going a little nuts and harming themselves and/or their families out of frustration and depression.

I think I’m maybe guilty of not trying to do enough for Wes, rather than the other way around. It’s fortunate that he progresses all right even with my minimal pushing. But I know what the speaker means about that feeling of trying to do everything. The MOST exhausting part of my job as mom is Wesley’s therapy stuff. I know these sessions are meant for him but they completely wear me out, every time. Each therapy visit means a concentrated hour watching and working with Wes and assessing how he’s doing and making goals for the next visit. It might not be so emotionally exhausting except that he’s my son and I want him to do well. The therapists give me a list of things to work on with Wes for next time. It’s a heavy burden sometimes to consider that the progress and well-being of your child largely depends on how much effort YOU put into him. And when the therapists come back and review our goals and Wes isn’t there yet, well, it’s a little disheartening to realize it’s partially because I didn’t work with him enough. It’s the same with the weekly playgroup I take him to with other developmentally delayed kids. It can be exhausting, both emotionally and physically.

On the other hand these sessions can be rewarding when Wesley finally gets something new. Often it’s at these sessions that we discover for the first time that Wesley CAN do something that I didn’t realize he could do. Those times are exhilarating.

Back to the brunch–it was nice to sit someplace comfortable, eat good food, and be told by someone else that what we’re doing as moms is special. I don’t often feel special because of my momness.

The other night Wes woke up about an hour after he went to bed, crying inconsolably. He was obviously tired and nothing seemed wrong, but he was very upset. I took him into my bedroom and let him watch an “I Love Lucy” episode on my lap until he fell asleep again. When I carried him back to bed I looked down at his face with his eyes closed and his mouth puckered together, and I recognized this expression as how he’s always looked when he’s asleep, even from the time he was a tiny baby. It made me think how he’s the same kid I gave birth to at just under 4 pounds, the same kid who wore preemie-size clothes and diapers for the first two months of his life, the same kid I would carry around everywhere in one arm and hold him in front of a mirror so I could see him better while marveling that we had a baby–the same kid, but now he’s older and bigger.

We’re having another baby this year and we’ll get to do the baby thing all over again. I forget what it’s like to have a baby. It’s easiest to remember the here and now. I wonder if in another year I’m going to have forgotten how Wesley yells “doh!” (“go!”) at himself and then runs like crazy across the room. Or how I’m forever finding pretzel remnants in the carpet and his car seat. Or how our table and chairs and the lower parts of our windows and fridge are constantly dirty with smudges of food and hand prints. Or how the other day John and I were walking with Wes between us down Main Street and Wesley was trotting when his pants suddenly fell down. Or how Wes claps at the cats to try to get their attention like we do sometimes. Or the hugs Wes gives me after I’ve disciplined him by making him sit in the Bad Boy Chair for a few minutes.

…and speaking of which, I had to pause to pull Wes away from the dirty kitty litter, which he was tossing around the floor of the laundry room and giggling at. I washed his hands and put him in the Bad Boy Chair while I swept up the mess, and then we had a brief talk, and then he gave me a hug. And now he’s playing. And I can already feel the exhaustion creeping up, and it’s only 9:30 in the morning on Mother’s Day.

Wes and I went to the Tulip Festival. I had never been and wasn’t sure it would be worth the entrance fee, but it totally was. The grounds were beautiful, the weather was warm, and the air smelled sweet like flowers.

Wes preferred to be out of his stroller, but when he was a few tulip petals met an unfortunate end.

When he wasn’t destroying tulips he was doing a lot of this:

Wes is 2 1/2. I just bought him his first box of diapers where the baby on front is actually standing and walking instead of sitting or crawling. Wes is really growing up, finally.

He’s tall enough to reach door handles and, if they’re the lever kind, to pull down on them and open the door. This I discovered today at church when he helped himself to a classroom whose door had been closed.

This week he and I went to a farm and he got his first-ever pony ride.

He likes to sort and organize things. Very meticulously. Here he was taking my “I Love Lucy” DVDs out of the cabinet and putting them back in, but sometimes he pauses to examine the DVD box covers. I think he’s looking at the picture of Lucy on the front.

Also notice in that picture his sharp haircut. This morning Wesley’s hair was verging on hippie-esque, so while he was in the bath I tried cutting it. After accepting defeat I let him finish his bath, and when John came in to see why Wes was screaming so much he stayed to give me a hand and hold Wes while I snipped. Wes is pretty good natured, but certain sounds scare him: loud noises make him uneasy, and so does the sound of slicing or cutting. He doesn’t like it when I cut his toast, or slice meat or fruit. So scissors slicing away at his hair millimeters from his ears? Forget about it.

Whenever I cut Wesley’s hair people at church will usually comment when they see him: “Oh, did someone find the scissors? Naughty boy!” “My, what a creative style!” “He looks like such a little boy!” or something along those lines. But I will take the criticism for the crooked lines because much blood, sweat, and tears went into his uneven haircut (actually, we managed to avoid blood. But Wes had the tears, and me the sweat). But at least his hair is shorter.

Wes is an eager helper these days. He knows that “Let’s go do laundry” means that he can hand me soggy items from the washer for me to put into the dryer. And sometimes it means he can put the dirty items into the washer or pull the clean items from the dryer. He hasn’t gotten the knack of folding yet.

Here he is sweeping the outdoors.

And running.

And back to the meticulous organization thing, here he is sorting some rolls of paper towels into a laundry basket.

Last of all, John gave me permission to get Wes a sandbox. But we’re trying to be frugal and those sandboxes cost a lot. We trimmed the cost by getting a wading pool and then bags of sand to fill it with, plus a tarp to cover it with. Tomorrow Wes gets to break it in with his sandcastle building supplies.