Dream Shard Blog: The Scintillating Adventures of Our Household

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May '10

Just Being Grateful

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.


5 Responses to “Just Being Grateful”

  1. tara72 Says:

    awwwww, this post made me cry, sis! stop it!!

  2. mom Says:

    Aww, Shan…..now the water works are turned on Big Time in Iowa too…..you’ve been doing that to me lately, but it’s okay. It’s worth it just to read these posts, sweetie. I’ll hug Wesley in about 7 weeks….if he lets me, that is.

  3. jemima35 Says:

    I love reading about Wes, I cant wait to meet my Jack.

    I found out recently that my grandmother has been describing our situation as a ‘tragedy’. I dont know how to feel about her feeling like that, we certainly dont feel that way and she’s a bit of a gossip so I have tended to shrug it off, she’ll be proved wrong and I guess its practice for opinions and perceptions that we are going to come across.

  4. shannon Says:

    I wouldn’t worry too much. You may be surprised to find that Jack, who will radiate so much love to others, will get that love right back.

  5. jamie Says:

    Oh Shannon, I love this post. What an idiot that woman was to say that about living with Down syndrome to that other lady! I gasped when I read that. How are some people so clueless?

    Anyway, I just love these posts about your cute boy. I think I’ve only seen him twice when he was a baby but he is just getting cuter and so much bigger. And it’s always good to hear that I’m not the only mom that struggles with a whiny 2-yr-old. Jacob is getting closer to three and I LOVE it! It’s amazing how much they change in a matter of months. Jacob’s still whiny but his 3-yr-old sweetness phases are coming more and more. Thank goodness.

    And I love the videos of Wes. That cute little voice. I think all toddlers have little the sweetest angelic voices. There’s nothing like it.

    I’m excited to see pics of your next little one. Are you with Dr. Judd again?

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