September 25: The Craziest Week Yet, But I Did Remember To Wear A Shirt

This has been one of the craziest weeks I can remember.

Sarah has yet to attend school for a full week since school started at the end of August. This week she missed two days in full and one partially. I kept her home on Monday because, though her covid test was negative, she was quite congested. She took two long naps, which is not unusual for her on a weekend or day off, but did make it seem like I made the right decision to keep her home. The naps seem to have fueled her for a wonderful afternoon. She absolutely rocked her virtual piano lesson, including playing a new piece before her teacher could even talk it through with her. Then in swimming she moved up to Turtle 2! She had been a Turtle 1 for three years and five months. It’s not like Monday’s lesson was THE lesson to make the difference, but it was still monumental. I was all teary when her teacher told me she was moving up. 

She went to school on Tuesday, didn’t nap at all when she came home, and had tons of energy while playing with Gregory. 

Wednesday seemed fine until Sarah was getting dressed and she suddenly wasn’t feeling well in her customary way of belly/phlegm/headache. What is so difficult with those bouts of not feeling well is that sometimes they wipe her out for a day and other times she moves past them within an hour. I almost kept her home but she really wanted to go on the bus. But I wasn’t surprised to get a call from her teacher saying she wasn’t feeling well and that the teacher would give her Advil and see if it would help. I knew I might get another call. I went to feed a friend’s cats. When I came home I heard Amy crying hard and ran up to find out what was the matter. One of her besties tested positive for covid. Out came a covid test for Amy. Negative. Amy got her sad out and left to get her bus (her new extra early bus!). I hopped in the shower for a quick rinse off before going to meet a friend. While in the shower, my phone rang. I assumed it would be Sarah’s teacher again. Nope! It was a robo-call from Amy’s school saying that the power was unexpectedly out at the middle school and to please pick up my child from school immediately. I knew she hadn’t even yet arrived at her school! Within a minute, with me still wrapped in a towel, I got the anticipated call from Sarah’s teacher saying she wasn’t bouncing back into feeling good and I should come get her. Huh. Keep in mind Carl is still away.  Sarah and Amy’s schools are each 20 minutes away from home, but in opposite directions. Luckily, as I hastily threw on some pants, I got a text from a friend whose kid also goes to Amy’s school, offering to get her. Phew. One problem solved. Except Amy doesn’t have a phone, so how to tell her? I asked the friend to tell her kid to tell Amy what was happening. I didn’t realize that message would be conveyed across seats in a loud bus, so Amy didn’t actually know what was going on. Anyway, back at home, as I called Amy’s school to tell them how she would be collected, I started to head towards the stairs so I could be on my way to get Sarah. Then I realized I was only half dressed and had forgotten a shirt! Details, details. So, back to get a shirt. Then out the door to get Sarah. As I was driving, a call came from a name and number I didn’t recognize. Luckily I decided to pick up. 

After a slight pause I heard Amy’s slightly quavery voice say, “Mom?… There is no power here so parents have to come pick us up.”

“Sweetheart! You will be going home with ____. I have to go get Sarah from school because she’s really feeling sick. You might get home a few minutes before we do.”

Amy evidently was then taken down to be with the seventh graders, since that is where the friend she was going home with was. She felt out of place with all of the bigger kids, only one of whom she knew. Her morning all felt a bit scary and overwhelming. I can only imagine the chaos of needing to manage sending home all of the kids as soon as they arrived. Luckily the wait was short and Amy and her friend had a good ride home together.  Sarah and I got home just a little after Amy did. Sarah then slept until 1pm before she bounced back to health, asking for lunch and seeming like her bubbly self. 

Thursday was picture day for Sarah and she started to feel a little off again as she was about to get on the bus. F#(&Y*! What to do? I asked if she wanted to stay home, and she said yes and then said no in rapid succession. A common and confusing moment of dual answers. She got on the bus. I worried that I had made the wrong decision, but I did have my father-in-law (newly back in town) on call so I could still go to work even if Sarah needed to come home. I heard a little later from Sarah’s teacher that she was happy and well. You can see how different the two days were and yet how similar at the start and thus how hard to make a decision about an appropriate course of action regarding school. Amy’s school still had no power, but she was going to a friend’s house for the day.  I could still see my clients later in the day. We went together to check the friend’s cats that I’ve been caring for. On the way home I noticed Amy seemed a little snerfly. We did another covid test and this one was positive. Darn it all! So… no more going to a friend’s house. And now I had to see what my clients wanted to do. I tested negative and since I had covid within the past 90 days I’m clear to still be out and about if masked. One client opted to reschedule and the other to come in, which was fine because Amy is ok on her own for a bit and she didn’t feel sick aside from the runny nose. She also had a muscle (probably gluteus medius or TFL) hurting her a lot so I had worked on her some but she was lying low compared to her normal cartwheeling handstanding self. Anywho, I also now had to inform Sarah’s teacher about Amy’s covid status and see what she wanted me to do. It being picture day complicated matters because, although there is a backup picture day, I didn’t want to gamble that Sarah would be well on that day. By the time Sarah’s teacher called me I was about to leave to go see my one client, so we decided Sarah would just come home as usual on the bus but would stay home Friday to be on the safe side. Friday was also when the other 8th graders would be on a field trip Sarah wouldn’t be joining anyway because it was to a school that doesn’t have the St. Anthony School program, which is her program. Sarah has continued to test negative for covid. 

So. Now what? I was supposed to teach a 4 hour continuing education class on the Alexander Technique on Friday morning!! But with Amy having covid I didn’t feel like I could ask anyone to babysit. I could have asked another AT teacher to cover for me, but this class is my class. It’s not the same as regular classes at the massage school where any of the AT teachers on staff can swap in when needed and the class format is already determined. This one is my baby and I wanted to teach it! Amy said she and Sarah would be ok on their own. I had my doubts because sometimes even when I leave for 15 minutes they get into a fight. But, Sarah has wanted to be quite solitary when at home lately… And she does love technology…. And Amy agreed to do all she could to keep the peace between them, even if that meant not doing what she wanted to do and giving Sarah preference in all things. I told her I would pay her for such accommodation. Thus it was that on Friday morning, with some trepidation, I left my children alone for 5 hours!! That was a first. Amy has been on her own for a couple of hours and Sarah on her own for maybe an hour tops. Together I’ve left them for maybe 30 minutes at most. And yet, it all went well. They watched their shows. Sarah napped. They ate the lunches I packed and left in the fridge. All was peaceful and well. And my class went wonderfully!!

Sarah often asks me to leave and wants to eat meals on her own and be alone in her room with her books or technology. She even often wants to nap on her own. Oh why did I ever resent it when she used to frequently want to snuggle and do “chirp chirp, crocodile, crocodile” exchanges?! Now I feel rather bereft that it seems like she doesn’t want to spend time with me. That is hard on my heart. I have cried a lot. And yet I also am trying to appreciate that maybe this is an appropriate growing up stage for a 15 year old. She didn’t even spend time with Anna on Wednesday during the 3 hours Anna was babysitting! That was highly unusual. She is also seeming more tired than usual and I’ve been working to get her to drink more water. Some days she barely has anything to drink. She used to like gatorade but even that doesn’t seem to do it anymore. So I’ve started taking water with me whenever it is a moment to transition away from technology or I’m just checking in. I ask her to take a few sips. Yesterday I happened to say, “Yeah-ya” in a dramatic way after one of her sips and she cracked up laughing. So now I say that every time she takes a drink. Today she is drinking a bit more water each time with a bit less complaining. 

Sarah has been reviving signs that she used to know when she communicated primarily in sign language. Yesterday she kept asking me to make the sign for “all done” but today she tells me she doesn’t like that sign and doesn’t want to do it, and that is without my signing or saying it. Puzzling. 

Amy still seems to be feeling fine and her muscle isn’t bothering her anymore. We have been watching many episodes of the Great British Baking show and are thoroughly addicted. It is really lovely snuggling on the couch even while masked, and watching the show together. One afternoon Amy was inspired to bake and made delicious cake pops almost entirely by herself. She will be home Monday and Tuesday, but is cleared by the school nurse to go back on Wednesday. She would have been home anyway on Monday because her school is closed for Rosh Hashanah. 

I have rounded the bend on my book about Sarah-Rise and have started working on the 3rd draft! Making all of the changes from the first draft into the second draft felt like turning a truck without power steering. This time the changes should be smaller, but it still feels like serious work. But oh my goodness! What an exciting place to be. I am torn between an impatience to get it finished and out in the world, dreaming of it being a best seller, and absolutely terrified that this is a terrible idea to publish it at all and what am I thinking?!

Carl finished the BC Bike Race (British Columbia Bike Race). It was an immense undertaking and a huge physical effort and he made it, with heart strings hurting for his friend in whose honor he rode. At the end he received an extra finishing award because the race people knew that he was really riding for two.

And to cap things off for this full week, yesterday a deer accidentally leaped into a giant sink hole that is under repair on the street next to ours. Oh dear. Luckily someone saw it jump in and notified the authorities. Many people came to help and got it out safely. 

I sincerely hope your weeks were a bit more under control and that putting on a shirt was never an afterthought as you headed out the door.

September 18: A Great Week with Lots of Insights

This past week was a much better week and I’ve been feeling great overall. I had a helpful talk with Samahria (the original Son-Rise mom). I said all of the things that I hadn’t wanted to fully admit to anyone about just how deeply I could resent my sweet Sarah for her condition, her behaviors, and how much I felt like my life was impacted by all of it. I realized that sometimes I scare myself about her health, worrying that she will die, in an attempt to get myself feeling loving instead of resentful. Ugh. Airing it honestly helped me let go of it more, as did her suggestions regarding when Sarah had big upsets when Amy was in the bathroom and to put myself more front and center of my life. 

Sarah’s upset when Amy uses the bathroom often comes and goes so I can’t be completely sure that the reason it stopped this time around was my own internal shift, but maybe. We seemed to go rather abruptly from Sarah having extreme screaming and banging-on-the-door times, even doing so after she had been in bed for an hour but then heard Amy close the door and thus got up to protest…to Sarah not reacting at all. The shift coincided with me deciding to react not at all the next time Sarah got upset about the bathroom situation. I talked with Amy and Carl about this too, so we were all in agreement that we were going to completely ignore it as if it wasn’t happening. And then we never got to put it into practice because Sarah hasn’t gotten upset about it again!

I have been reading Emotional Inheritance by Galit Atlas and has given me a lot of things to contemplate with more compassion and understanding than I normally do. Instead of just berating myself for my tense spots in parenting and life, I have realized that maybe I came by all of that honestly. Maybe my relatives going back multiple generations also had such struggles. It is humbling to only now really be contemplating the internal emotional life of my grandparents and what that might have been. Did they also always worry about doing well in school and in life? I know that is such a common thing for people that we don’t really even question it that often. This week I have started to question why I always strive so hard to do well at everything and need that approval from others to feel safe in life. Who was I before I started thinking I always needed to do everything for everyone? Before I needed to get an A on parenting and life?

The really big realization was that I have perhaps been seeing Sarah as an assignment that I needed to do well on. I know I have also diligently worked to support her as who she truly is and to give her lots of room for that, but there is still an undercurrent of needing something from her to feel ok about myself and my choices. As if when the homework assignments of babies were handed out and I realized my kit was missing some components, I just dug down deep and also tried to hurry to catch up to everyone around me. I know I realized rather quickly that catching up wouldn’t be a thing, but part of the drive to try all the therapies and all the dietary things and give all the love has been hoping that it would work. That we would be deemed good enough. That I would be safe and ok. I think that is what a lot of it really boils down to. So, this week I have often reminded myself that I don’t have to always do everything well and it is ok to make mistakes. It is ok, really really really ok for Sarah to be Sarah. Even with parenting Amy and running the household, there is perhaps more breathing room to make choices that aren’t always about taking care of other people and the house. I know I do make such choices all the time and it’s not really new, but to really not feel guilty about reading my book when there are dishes? Well, that is still a work in progress.

We have learned by experimenting that Claritin really isn’t strong enough for Sarah’s allergies so we have switched to Zyrtec. The Allegra was annoying with the twice a day doses or needing to swallow a pill and the fruit restriction. Sarah’s symptoms of phlegm and headaches and acid reflux are much improved overall but we aren’t totally free of them so it is still a journey. 

Remember how Sarah really wanted a certain book about a frog? Well, the librarian who helped order a book from a different library was clearly wise and magical. It was in fact THE book!! Sarah has been thrilled to have it and I even remember us having it before. It is jellyfish who come to tea and it only has a frog on the first page, but it does have holes to poke your finger through. Coinciding with the arrival of the book, Sarah has wanted to eat breakfast on her own in the family room while reading the book and listening to music. When she came home from school each day she went up to her room and shut the door to be on her own looking at the book and then to nap on her own. On the one hand that all seems like normal growing up and into teenager hood, on the other hand I missed Sarah wanting to spend time with me! Even though I so often didn’t want to do snuggle time when she wanted to, once she stopped asking I felt bereft. Sarah has also wanted to eat dinner by herself, either being outside while I am inside or being at a different table if we are outside. Since Carl is away, Sarah still wants to sleep next to me and our interactions overall have been loving and connected, but it is definitely a little different with how often she wants to be on her own. 

Carl is away in British Columbia doing a 7 day intense mountain biking race to honor his friend who died over a year ago, with whom he was originally going to do the race in 2020. The original plan was to do the race to honor the friend’s son who had died. So now Carl is biking to honor both of them.

Sarah has been interested in listening to a version of “Amazing Grace” sung by an acapella group from Swarthmore college from when Carl and I attended. It is my favorite version of the song and I used to sing it to Sarah when she was little. What surprised me this week was that she asked me to sing it with her!! She never does that! She never wants me to sing anymore. But now she does. And she wants me to play the song on repeat, which I’m happy to do. Amy didn’t believe that there were other songs on the album that would feel non-Christmassy so I did play a snippet of “Kiss the Girl.” A little while later, as I still sat at the dinner table with Sarah (an unusual meal together), she sang, “La la la la la… kiss the mom,” and came over to give me a kiss! The timing was perfect as I was feeling sad about something unrelated to kids, worrying that somehow I had messed up in another area of my life. She asked why I was sad. I said I had nickel feelings. She hugged me and said, “there, there, mama, it will be alright.”

Amy was interested in possibly dying her hair so I had ordered Manic Panic, some temporary dye that comes in fun colors. We did a super temporary dye that unfortunately resulted in Amy’s hair feeling like dry twigs that might snap off. It took a ton of brushing to get it to feel like hair. The next day she washed it out and we used the regular dye to put a purple streak in her hair on either side of her face. I used a different purple to dye all of my hair, and the places where I had white hair are definitely the brightest. Sarah got into the dye while I was on a phone call and attempted to dye her bangs. I think she didn’t put in enough dye for long enough and maybe used the wipes meant for cleaning dye away. Her bangs didn’t actually change color, which is just as well because her school doesn’t permit students to dye their hair. Honestly, part of me wishes Sarah had been successful because I wanted to see what her school would have done. But I’m not going to flout the rule on purpose so I’m leaving her hair as it is.

Amy’s school bus did not in fact come any earlier in the mornings than it ever did, except maybe by 5 minutes. She had been told it would come 15 minutes earlier but what that really meant was that she just waited an extra fifteen minutes at the bus stop. Now we have been told she will be on a different morning bus altogether and she has to be out there even earlier. Fingers crossed. 

I got out of jury duty! I turned in my letter from the pediatrician and was exempted within a few minutes of my arrival. The exemption is good for five years! So I took the bus to get home, stopping at the library to pick up THE frog book for Sarah. Then, instead of ubering or busing (I had ubered downtown rather than deal with parking), I walked all the way home from the Squirrel Hill library. For those of you familiar with the east end of Pittsburgh, you know what a long walk that was, especially with the Fern Hollow bridge still out of commission. As I round the bend on my 6 month new-hip-versary, I am so pleased to be able to do such a long walk. 

Lastly, I listened to some episodes of Glennon Doyle’s podcast We Can Do Hard Things in which she interviewed Dr. Becky Kennedy, a parenting expert. Dr. Becky’s way of explaining things was reminiscent of many things I have learned or thought about, but said in new ways and at the right time to be newly helpful. One metaphor she uses is that the parent is like a pilot of a plane. When there is turbulence, if you are a passenger, you want a pilot who will be confident and steady, even if they leave the screaming passengers alone while they go to the cockpit. You don’t want a pilot who also gets scared by turbulence (big feelings from kids) or asks if there is anyone else who knows how to fly the plane. She also talks a lot about active listening and honoring the experience your kids are having, even if you aren’t going to change your answer that they may be resisting. Anyway, I highly recommend those particular episodes. 

I have been watching The Great British Baking Show. Amy has joined me the past two nights and that has been a lovely snuggly time together on the couch. The only trouble with watching the show is that in my dreams I seem to be trying to bake things or need things to be just so. There was a night when Sarah needed to get up to pee, but in my confused dream state I was trying to stop her because we all needed to look the same and stay in our boxes! Last night I can’t tell if Sarah had a few startle seizure moments or if I was just in my baking show dream state and trying to stop her from moving. Maybe both. I don’t know. 

Anyway, I hope you are well and that you have someone to listen to your deepest feelings and help you forge ahead into new freer living.

September 11: Frog Books, Health Mysteries Continued, and The Screamies

Last weekend as we finished our camping trip, we had one more afternoon at the beach. It was wet and rainy and not all that warm, but we still had a good time. Amy, with some help from Carl, made herself a mermaid tail out of sand. Sarah wandered over to a park sign and spent a long time looking at it. When she came back, Carl asked her what it was about and she replied, “Eagles.” We didn’t get any further intel, but that still seemed like a notably cool moment. Meanwhile, on one of the nights camping, Amy and I went on a loooong walk to get from our campsite to the amphitheater (signs for it aren’t great), made it after shoving our way through some woods where there wasn’t actually a path, and learned about raccoons. Then we went on a very long walk back to our tent, narrowly avoiding a dead frog in the road that we didn’t see until our feet were nearly upon it. I commented that I have a weird knack for seeing dead animals. Amy inquired about the back story and when I described how in one of the first walks I ever took with Carl I spotted at least one dead animal in the woods, Amy said, “Is it safe for me to be with you!?” And we both laughed. 

We went out to lunch on our drive home from camping, but unfortunately the apple juice Sarah quickly downed upon our arrival the restaurant seemed to trigger her acid reflux/phlegm/feeling crappy. So she barely ate any lunch and it took a few hours before she was feeling better. We learned our lesson. No more apple juice for a while, or at least not ingested so rapidly. I had also realized that I was mistakenly only giving Sarah a half dose of Prilosec so starting the next day I increased it to what was prescribed. When we got home from camping, almost everything had to be spread out to dry, mostly inside our house because it was still rainy outside. So the family room didn’t have the clearest floor to begin with when Sarah woke up Tuesday morning determined to find a book about a little green frog.

I have no idea if the book she had in mind is even a book at all. I certainly don’t believe we ever owned it. I do remember her nutritionist singing a song that Sarah was remembering in conjunction with the book, “Mmm -eh went the little green frog one day, Mmm eh went the little green frog, Mmm eh went the little green frog one day, mmm-eh, mmm-eh, mmm-eh.” When you say the “eh” part you stick out your tongue like a frog. Do any of you know of such a book? Sarah also says there is a frog who comes to tea. In her diligent, determined search for this book Sarah took almost all of the books off the shelves in the family room and spread them across the floor. So the floor was covered with camping gear and a layer of books. It was impossible to walk through, but that didn’t stop the cat or kids from doing so, despite the fact that our downstairs has a circle so you really can avoid that room and still go anywhere else you need to go.

When Gregory arrived for his session with Sarah, the frog book was still at the forefront of her mind. He wrote: 

"Sarah picked up a random book and said, "Let's pretend this is The Little Green Frog."  I was certainly in.

She began, "How many frogs came for tea?"  And we counted.

But then, she shifted. "How many frogs HAVE COME for tea?"  She shifted that verb tense and I shifted with her.  I took on a fancy/British accent, "OH!  One frog HAS come for tea.  And...TWO frogs HAVE come for tea." just infusing the irregularity of the verb form she chose and continued to explore.  THEN...she shifted again, "The first frog is coming for tea," and so we shifted to ordinals.  Second, third, fourth, etc.

It's like she was feeding me therapy points that I could use to expand, explore, or just imitate since she was driving the car.

Very wonderful stuff.”

---

I ordered two books about little green frogs and we searched the library as well. Still to no avail. Luckily Sarah’s desperation for the book has calmed. 

What has not calmed is whatever is going on for her body. I do think the Prilosec is helping in terms of whatever phlegmy stuff she was feeling, but either that or increasing the Miralax did us no favors on Friday. Friday morning I had to pick Sarah up from school because she wasn’t feeling well and in a voluminous output sort of way. Once she came home she actually seemed fine, so I don’t know if it was a bug or just too much Miralax. We took a short break from it but can’t stop forever. Yesterday when she woke up the first thing she said to me as I handed her the Prilosec was, “My cheek feels funny.” Um… I couldn’t see anything except maybe it was slightly swollen. I couldn’t feel anything except maybe she had bitten it by accident (but when? If it was in her sleep that is extra disturbing). We wondered about a canker sore or pimple. She seemed mostly fine as the day went on, but around 4:30 was really complaining about her cheek hurting. Her lower right lip was swollen and she was asking to go to the doctor. I decided to take her to Express Care at the Children’s Hospital, which is the after-hours pediatrician type place. Except that I forgot it had moved to a different location entirely. So after we drove 20 minutes, parked, and were confused as to why it wasn’t on the directory, then I saw a sign explaining the new location. Argh! At this point, Sarah, who seemed in good spirits and wasn’t complaining of pain anymore despite the swelling, wanted to go home and have dinner instead of going to the new location of Express care. So that is what we did. Her cheek and lip seem a bit better this morning, although not fully. 

She has also had extra intense screamy episodes three days in a row, with Friday afternoon being the most dramatic regarding a missing ring and me trying to leave for work. It was not a proud parenting moment, especially as we had a carpenter here putting in our new front door, witnessing our escalating frustrations with each other. Carl took over with Sarah and I did go to work, feeling like a hypocrite for yelling at Sarah and being all upset and then going to help someone else relax and feel better! At work I realized that Sarah’s ring had probably fallen out in her treat bag. (It had!) We really need to get rings that fit her better. She is passionate about wearing her pinky rings even though both are too big and the ring adjusters I got fell off. Anyway, with shorter screamy times seemingly out of the blue happening yesterday and today, Carl and I are wondering if somehow the Prilosec is making her more irritable. Or could it be the Allegra? Those are the things we have changed. I will call the doctor tomorrow to discuss matters. 

The good thing about Sarah coming home early on Friday was that she was watching her show and having lunch on the sofa when a bird flew into the house. Because of getting the new door, that means our house is wide open for hours at a time. I was in the dining room when I heard Sarah calmly say, “a bird went upstairs.” Come again??!! What? I went upstairs and, sure enough, a small bird was in our bathroom. Luckily Carl was home and joined me to help steer and encourage the bird to go out of our double doors that lead to the upstairs deck. It was a short but exciting moment. 

The other exciting thing from the week is that my new car, that we ordered a year and a half ago, arrived. Her name is Clare. She is a Volkswagen ID.4 so… I DeClare! I am getting a sticker that says, “Clare” that I can put over the “4” on the back of the car. The kids did a great job waiting patiently while we signed papers, and even had a snuggly fun play time on a chair together, so of course Carl and I simultaneously whipped out our phones to document the moment. It is a great picture and it helps me to see Sarah’s smiling face in the picture as we navigate the ever changing and ever frustrating health things for her, along with her whining and screaming.

Tomorrow, for the first time in my life, I have jury duty selection. Thanks to a friend’s suggestion, I am going in armed with a letter from the pediatrician saying I should be exempted. Carl is about to be away for 12 days for his big bike race and I have to be able to get Sarah from school at basically any time any day. I know this is technically true for any parent all the time, but with Sarah the current likelihood of me needing to get her is high. And all of my in-laws will be away at the same time as Carl and it’s not as if my sitter doesn’t also have a life and other commitments. I also have to be home at 2:30 daily to meet Sarah’s bus. So anyway, fingers crossed that I get exempted easily and early, because if it isn’t early it will throw tomorrow’s afternoon schedule into last minute cancellations and scrambling to make new arrangements for children.

Overall things have been feeling like a bit too much. Too much to figure out about how to help Sarah’s body, too much whining, too much mess, too much yelling. I catch myself being very critical of myself and feeling rotten and grumpy about everything. I’m trying to be gentle and turn that truck around. I do have an appointment with a therapist in October and this Tuesday I’m talking with Samahria, the original Son-Rise mom. Talking to my mom and friends and Carl also helps. But this stuff is hard. And I would like to have a morning that doesn’t start with a new health issue and or whining about a missing ring or a need for a book or item of clothing that we do not have. On the plus side, Amy’s morning bus is supposedly going to come 15 minutes earlier than it has been so maybe she will actually get to school on time. Fingers crossed. 

September 4: Medications, Feelings, and Frustrations

Five. That is the number of medications Sarah now takes every morning. Then three every evening. A week ago it was three in the morning and two in the evening. Plus one in the afternoon. So it’s not really that much of a jump but it feels like a lot, especially when camping as we are this weekend. To back up…

Tuesday night Carl was away on a business trip so Sarah opted to sleep next to me. At 4 am she woke and said, “mama, my throat.” I said, “what? … is it sore? Scratchy?” She said it was scratchy. I said she could stay home because I want err on the side of caution re sickness. Then about a minute later it was clear that whatever Sarah was feeling related to her usual phlegm “pukus” (as she calls it). If I had known it was the usual then I would also have known she would feel fine in about an hour, as she did. But since I had already said she could stay home there was no going back. I only had to cancel my session with my trainer and I decided to make use of the day by taking Sarah to the doctor. I spoke to the nurse extensively before making the appointment so she arranged for a double-long time with the pediatrician so we could really talk. After much discussion we all decided to try putting Sarah on Prilosec for a month to see if it will help Sarah’s symptoms if they have been due to acid reflux. We also decided to try Allegra instead of Claritin for Sarah’s seasonal (all the time??) allergies. Sarah doesn’t yet swallow pills so the Allegra is a liquid version to be taken every 12 hours. The Prilosec is also a powder that gets dissolved in water and Sarah has to take it in the morning 30 minutes before eating. This is a tight squeeze on school mornings. And she says it tastes disgusting but she still takes it. So far (knock on wood) the Prilosec seems to be helping. Sarah went from talking about and or experiencing phlegm discomfort multiple times a day to not mentioning it at all. We will see how things go when she comes off of Prilosec in a month. If her symptoms return then we may need to do an endoscopy and see a GI doctor. 

I have still had many moments that felt struggly and fraught. I know they are only mere minutes out of each day, but they overshadow my feel of the day immensely. I found a couple of therapists that sound like possible good fits and specialize in helping with parenting issues. I’m attempting to get an appointment but almost everyone is super booked. I don’t want parenting advice because I want to go to Son-Rise people for that, but I do want support for my half of the feelings. I have felt some success moving through the feelings by more often allowing my tears instead of tightening into anger. Or sometimes I do both. But I am always clearer and more open after some short hard tear sheds. 

Amy’s bus situation continues as usual except even a little worse. On Tuesday at 4:30 I got a text from her school saying she had an unexcused absence for the day. What?!?! As she wasn’t home yet, I freaked out a bit wondering where my child was if she hadn’t been in school. Luckily her best friend has a phone so I asked the friend’s parents and found that all was fine and they were on the bus home. But they had been so late in the morning that they missed home base, thus being marked absent. After I emailed about it, things were corrected. But still. If she is absent and it isn’t excused then I would like to know early in the day, not when she should already be home if the afternoon bus could ever be on time. Which it apparently can’t. 

Wednesday at bedtime when Amy went to use the bathroom after Sarah had already finished, Sarah went into full blown screaming and upset, trying to shut Amy out of the bathroom. In retrospect I can only assume that the day with seeing the doctor (and getting an X-ray of her abdomen to check for impaction - it was ok but we do need to increase the miralax) was more taxing for Sarah than she let on until that moment. After Sarah had regained her equilibrium and gone to bed, Carl and I were with Amy as she had her feelings about how hard it can be to have a sibling. I said, “I’m sure Sonia felt the same way sometimes.” Then we all cracked up laughing because Carl had expected me to say something on his behalf instead of pointing the finger at his having been a frustrating older brother. (Sonia is Carl’s younger sister.)

Sarah also clearly still has feelings from her first day of school when the bus was late in the afternoon. I suggested she could write a book about it so she did. She called it “Toad’s Bad Awful Day” but wrote it as “Toad Bad Aufl Day.” She drew herself yelling and her classmate telling her not to. She drew the bus and herself as Daniel Tiger wanting to roar. Then the final picture was of a sad Sarah next to a smiling Anna listening to her. 

Sarah has helped me make fresh carrot, celery, apple, chard, and cilantro juice. She wears Her sunglasses to do so in style. I had recently started making this juice again as a vehicle for Sarah’s miralax instead of hot chocolate or Gatorade. Except. Now that Sarah takes the Allegra in the morning, I can’t do the juice at that time because you aren’t supposed to have fruit or fruit juice within an hour before or after the Allegra. It has been a challenging week trying to figure out how to manage all of the medications and their limits or requirements. This coming Wednesday we meet Sarah’s neurologist so maybe we can try weaning off one of the anti seizure meds, as has been the long term plan. Especially because that particular medication can cause irritation to the mucus lining of the upper respiratory tract! As I just learned when doing some reading.  She has been on it for years and the phlegm issue is more recent, but still. Maybe the medication is part of the issue. 

One day I was talking with my mom when Sarah got off the bus so I didn’t greet Sarah as I so often do by asking her about her day. She stopped me and said, “mom, can you say ‘how your day was’”…..Yes!!!! I didn’t know she liked it when I asked. This touched my heart and I will most certainly ask every day from now on. 

We are camping now and have had a generally good time so far, although the weather is much wetter than forecast. Yesterday the kids played in the lake while it rained. Luckily the rain stopped in time for us to have a fire and cook hot dogs and s’mores.