I'm on Spring break right now and after debating back and forth for several weeks, I decided I would take Tera to daycare Monday through Thursday this week. I did this for several reasons. One, we pay whether she goes or not so it wasn't going to save me any money. Two, I really can't get anything done when it's just her and I and this is my only time to catch up and get ahead of any cleaning or projects around the house. Three, most of the time when it's the two of us, she looks at me as if to say, "So now how do you plan on entertaining me? No ideas? Ok, I'll trash the place." I love spending time with her of course, I just never know if it's going to be one of those wonderful, amazing days I'll look back on in a few years and reminisce about, or one of the ones that leaves me searching her head for horns and wanting a drink by 11 am. See here's the thing that some people, not all because I know in this respect she's completely with her typical peers, don't understand: she does not stop moving or looking for trouble. I know other parents whose kids are like this, I'm not under the delusion she's the only one. But I also know a lot more whose kids actually sit once in a while, and even if they don't sit ever either, I know, because I've witnessed it, their kids aren't reaching for every counter top and table top to see what they can reach that they're not supposed to have, they aren't running into the bathroom head first into the tub or pulling all the toilet paper out, they aren't emptying bags of dried cranberries all over the floor, and they're not ripping apart books. And if you are the parent of a child that does all of this, and perhaps even more, know that you have my sympathies.
Yesterday morning it took me almost a full hour to get Tera out of the house, just to drop her off at daycare. There was 20 minutes of nebulizing, remembering to give her her thyroid pill, realizing her pill cutter was broken and trying to use a knife unsuccessfully, doing her hair (which is basically a nightmare), getting her dressed, putting her shoes on (with orthotics), and changing her clothes after she had a diaper blowout. I finally dropped her off at daycare and called Tom almost in tears wondering if it will ever get any easier. I feel like half our lives are spent fighting with her to do things we need do; like washing her hair, combing her hair, putting her hair up, trimming her nails, getting her dressed, taking her thyroid pill, not throwing food and her cup; sometimes her shoes, teeth brushing and nebulizing can be tricky but not as much as the other stuff. The other half of the time she's sick (and many of those things overlap with being sick). I was upset over having had such a difficult start to the day and then I felt so completely guilty for not being able to just suck it up and take care of my kid. I went to the gym and in between sets I read an article that Tom had sent me called "8 Lessons my Baby with Down Syndrome has Taught Me" and I started to feel a little better. It put my morning in perspective (especially the part about patience). I do understand, more than a lot of other parents that I know, what this mom means. But I also know that as a human, I'm just not capable of always looking at the positives. Some days it just sucks.
Like it sucked that Tera ended up throwing up yesterday afternoon at school resulting in me having to go pick her up before I even had a chance to shower (I was in crazed cleaning mode). It hasn't happened again since then, she has no fever, and she's acting totally fine so who knows what the reason was, but it also meant she couldn't go back to school today. So I get her home and she proceeds to go into tornado mode and within a half hour of being home had emptied her books, a cabinet, and a drawer onto the floor. At one particularly weak moment, I cried when she repeatedly did the same thing I had asked her not to do. This was a sore spot for me at the time because I had just asked her daycare teacher what was holding her back from moving up to the next classroom and it really boils down to following directions. The direction following is mostly centered around the bathroom for them. In the next room they potty train and as a result, always have the bathroom door open. This is a problem when Tera is in there because she's constantly going in and playing around the toilet which can be dangerous if someone doesn't have their eye on her. So as I'm sitting in our living room, asking her over and over to stop playing with the cord behind the table, I start crying because she can't or won't follow directions and it's holding her back. It's a hard thing to know that your child isn't capable of something or is and just won't do it. I do believe in my heart that she is capable of doing what she is supposed to do, but I don't think developmentally in this area she is age appropriate and that hurts to realize. It was easy for us to work with her on gross motor skills, even speech is something we can practice easily enough, but direction following is something she's working on with all her therapists and it's really hard to practice. I'm tired of hard. I want something that's easy. She used to be a great sleeper and we always said that at least with all her other difficulties, at least she's a great sleeper. That's not even the case anymore. Currently she's a pretty good eater and that's about all I've got. That and her smile can change my whole day.
So imagine my concern at what today could bring with just the two of us. She was up to an early start at 5am and I tried to stay positive as Tom left the house wishing me good luck and telling Tera today might be a good day to start saying, "mama". And you know what? So far, it's been one of the good days. We played this morning and at one point we had each other laughing so hard I thought she was going to fall over. I was able to get ready and we went out to the mall so that she could play in the play area and burn some energy since it sucks outside. This was not the highlight of my day and here's why: for some reason when it's just her and I out in public, I feel incredibly protective of her because I'm always wondering what other parents are thinking. Do they know she has Down Syndrome? Do they pity her or me? Or do they just see her as another kid? I'd like to think better, but I'm a little too cynical to believe the best in everyone so I just want to cover her and protect her from their curious eyes. Most of the parents there are sitting on the little benches either talking with someone else or on their phones, but I was following her around everywhere she went mostly so that she didn't get hurt or hurt someone else which failed miserably when I sat down briefly for the first time and she pulled a little boy's hair and made him cry. But this was exactly what I was trying to prevent because in my head I was concocting all these imaginary conversations this woman would have about the little girl with DS that pulled her son's hair. I apologized repeatedly for her and the woman genuinely seemed to not mind, but I still felt awful and that was when I just wanted to run with her and leave. It didn't ruin my morning or anything; far from it. We walked around a little while longer, visited with the sister of one of our friends who works there, and had lunch just the two of us. A Mommy and Tera sharing a sandwich while she smiled at me lunch and she ended up falling asleep before we got out of the parking lot.