After a certain number of weeks of writing about things feeling hard, I start feeling self-conscious as if I really need to write more uplifting and inspiring things. Then I remind myself that the point of these updates is to be honest and true and to help the future me remember all of this parenting journey. This week had some really tough parts and some really great parts, and the former may have birthed the latter. On Monday, immediately after swim lessons, I noticed Sarah struggling to take off one of her rings. I had noticed this before but this time I decided the ring needed to come off and not go back on. It was too small and I was feeling scared about it being stuck. Acting out of fear and when not at home was not a good combination. Sarah was extremely upset that I took her ring (after using soap to get it off and even then needing to tug hard). By the time we were in the car she was at full volume for her screams. I pulled over and waited until they abated before driving home. Amy and I were having a hard time just surviving the decibel level of screams and we weren’t feeling our most compassionate. That night I looked back on my choices and wished I had made different ones and felt like the worst parent/person. I cried a lot before going to bed.
The next couple of days I had breaks where I was working professionally so it wasn’t Sarah and me together all day, which may have helped me regroup a bit. I also started making things like beef jerky, non-dairy yogurt, black bean brownies, chicken soup, and veggie juice. On Monday Sarah and I had explored the new Whole Foods and lived to tell the tale, although it took us 90 minutes in the store! And we didn’t even get to all of it. Anyway, I overbought fresh produce, as is easy to do in Whole Foods. Also, if Sarah asks for a fruit or veggie I say yes, even if it wasn’t on my list. So we got a lot. Then the next day I got a bonus CSA share from a friend that included 4 gigantic peaches. Then on Thursday I got my own CSA share. Having such an abundance of fresh fruit and veggies that I wanted to use before it went bad meant I was eating more healthily than I have in a while. I had more energy. It also felt so good to dust off my GAPS diet recipes and skills, some of which haven’t been used in years and certainly not all together again. It usually has felt overwhelming to even think about until this week when it was suddenly do-able. But I wonder if it was doable because of my big cry clearing me out. Or maybe I had time and just decided to do it instead of debating and maybe that made the difference. I don’t know.
Amy’s bus situation continued as it started, being slightly late most mornings and quite late in the afternoon. I have decided that for Mondays I will always get her, even if I am a bit late, and we will just hang out in the car or swim building until swim lessons start. Sarah started school on Thursday and the bus was exactly on time in the morning. In the afternoon, not so much. It was half an hour late because the afternoon driver was new. Sarah evidently had big feelings about this and was screaming. Her teacher told her not to scream and reminded her she is in 8th grade. I couldn’t put my finger on it at the time of hearing the teacher describe this, but in hindsight I hate the use of a grade or age reminder to control someone’s feelings. It feels shaming, as in “you should know better.” And yet, I still have such a struggle around Sarah’s screaming that I can’t really fault another for not handling it differently. When Sarah got home I was teaching, but Anna met the bus and listened to Sarah’s feelings about her afternoon. Friday was a better day and the bus was on time both ways.
Yesterday Carl, Sarah, Amy, and I participated in the Run Around the Square, an annual race/walk that people can do as a 5K run or a 1.5K run/walk. Carl has done it before but the rest of us hadn’t. Since the closest parking was possibly at our house, we walked to the start of it, which was at Amy’s old school building from last year. The walk there seemed to be fine, but when we arrived Sarah suddenly was feeling yucky with her usual combination of phlegm and a bit of a headache and belly ache and dizziness. Sarah and I found a bench while Amy and Carl began the 1.5K. After many minutes, Sarah felt better and wanted to do the 1.5K too. So I walked and she ran and walked. We made it almost the whole way before she started feeling all of her symptoms again. We sat on a corner and Carl got the car to pick us up since by that time the roads were open to traffic. Sarah was saying that she felt crappy because of the run. I disagreed because I didn’t want her thinking exercise would make her feel sick. I also was feeling ever more desperate about her phlegm situation. While I intended to phase out gluten and dairy and did work in that direction, she certainly still had many items with gluten and dairy through the week. I was feeling like I needed to get Sarah to a doctor and make them do lots of tests to figure out what is wrong. I still plan on some appointments. But, after reaching out to the FB group specifically for parents of kids with Sarah’s genetic diagnosis, I feel equipped with better information. Multiple people responded to my query saying it sounded like GERD. I looked it up and a lot of it does match, including the fatigue in general and including feeling sick after exercise (especially if it is not long after a meal)! So Sarah may have been right in thinking there was a correlation. I will see a doctor to get confirmation or otherwise, but in the meantime, it can’t hurt to change Sarah’s diet to avoid foods that can increase acid reflux. So, no spicy foods, greatly reduced chocolate, and very little or no dairy (high fat dairy like ice cream is the worst culprit). I’m going to allow gluten to still be present since it never seemed like an issue before and I need things to feel manageable while we get more information. It was comforting to know that some other kids have similar experiences to Sarah’s. Not that I would wish it on anyone, but it makes it feel less confusing and scary.
We did enjoy a couple of hours at a lake beach yesterday afternoon, after Sarah had a long nap and some lunch. The trouble with yesterday overall, along with Sarah’s symptoms, was that I felt grumpy for most of the day. While I seem to have gotten my wish from a while ago that Sarah would stop obsessing about nickel charts and pretend phone calls from her teachers about her throwing up, she now likes to ask why she shouldn’t break my watch or hit various friends or family or teachers or break Dad (or others). What the hell?! That was a near constant theme for her yesterday and I didn’t handle it gracefully. Carl was able to turn it into something playful and didn’t get his feathers ruffled, but my feathers were definitely ruffled and bent out of shape. There is a different kind of weariness one has when it has been an emotionally struggly day compared to a physically strenuous day. I just felt worn out. I keep reminding myself that maybe a new burst of energy and clarity and ability is coming, just like it did after Monday’s emotional strife. My feathers just feel permanently grumpily bent towards most of what Sarah says or does. How much is stress and fear? How much is just being so over it all and not wanting to do scripted conversation anymore? I don’t know whether to push myself to be more flexible to give in towards what she wants or whether to just say, “Nope, sorry, I’m all out of doing chirp chirp for the foreseeable future.” It is not a great place to feel like I’m just enduring life with my child rather than enjoying it, even though I know I was over the moon about her adorable back-to-school picture and I do enjoy much of her creative play like when she pretends to call Dr. Crocodile after she eats hot sauce. As with feeling desperate on Sarah’s behalf, I realize I need to make bigger changes on my own behalf. I’ve started researching possible therapists, including one in Philadelphia who specializes in working with parents of kids with disabilities. I read his book years ago and really found it helpful. But I would also like to find someone local. The search process feels rather overwhelming, but at least I’ve started it.
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