October 2: Screaming, Swimming, and Sunglasses

First, I want to follow up on the whole bathroom screaming situation - when Sarah screams and pounds on the door if Amy is in the bathroom. When I last wrote about it it had seemingly miraculously stopped after Carl, Amy, and I decided we would ignore it completely if it happened. Well. I knew the cessation might just have been a coincidence as that happens sometimes anyway. Sure enough, Sarah certainly has more screams and door pounding in her and has let it out in spades over this past week. It does still help me stay calm to know that there is nothing I need to do about it. 

Sarah has also had some screamy moments at school. When her teacher called to tell me about Friday’s screaming episode she explained how she asked what grade Sarah was in, while telling Sarah she would just ignore Sarah while she screamed. I asserted that I didn’t think referencing a grade or age helps Sarah and might add shame to her already struggling self. After all, I’m 45 and if someone were to remind me of that after I lost it emotionally then I would just feel even worse about myself than I already felt. Her teacher understood and we brainstormed other ideas for helping Sarah when she gets overloaded. Because I do think it is Sarah reaching overload rather than seeking attention. As Sarah has been reviving some of her old sign language lately, I looked up the sign for “overwhelm” and taught Sarah and sent a video to her teacher. That way, hopefully, if Sarah is overloaded she can do the sign if she can’t find the words. Or if she has the words, I told Sarah she can ask to just sit quietly at her desk. I ordered some of her favorite books so she can have copies at school to help her carve out a quiet niche and maybe regroup.

Sarah has continued wanting to eat on her own, usually now opting to be in her room with the door shut, “for privacy” as she tells me. The only tricky thing with this arrangement is that she easily gets distracted during meals regardless of where she is, and stops eating to play or read a book. I need to be able to know where she is in her meal progress and give nudges to make sure she has her prescription meds. On school mornings I need to make sure she finishes in time to get dressed in time for the bus. This week she did in fact attend school five full days in a row! A first for the year. The morning bus started coming five minutes earlier than even it’s usual 6:58am time, and every day but Friday Sarah was still upstairs getting ready when the bus honked to signal its arrival. Friday was a dress-down day for a walkathon so Sarah was more excited to get dressed and was downstairs with her shoes on when the bus arrived. She had also woken up half an hour earlier than usual on Friday morning so I’m sure that helped too.

While I’m used to Amy going into her room to hang out on her own, having Sarah want to do that much more often than usual instead of wanting to snuggle with me threw me for a loop. I wondered why I ever didn’t want to do “chirp chirp” with her. Now I missed her and was slightly worried about how solitary she seemed to want to be. I realized that a lot of my interaction over some weeks mainly involved judgement and frustration from me towards her. So is it really any surprise she wouldn’t want to be around that? Now I’m more in a mode of appreciating any time she wants to hang out with me, no matter what we are talking about. I remind myself that it’s ok if things she says don’t make sense. Most days after school she naps if she can and I started napping with her so at least we had that time together. I feel like that has helped us get back into an amicable connection. She even ate dinner with Amy and me a couple of times during the week. It helped that I bought Halloween candles so one night even though she planned to eat in her room, I set the table with her plate and asked her to help light the candles. She then sat down and started to eat. When she asked about going to her room I asked if she could stay but Amy and I could talk only with each other and pretend she wasn’t there. That was acceptable to her and we ended up talking with her anyway. 

I feel like in one week I went from often feeling like I wanted more time to do my own things to suddenly feeling a bit of an empty nest syndrome and wanting to hang out with my kids if they will let me. 

Thursday night Amy realized she needed to catch up on a lot of school work and had many panicked tears. I assured her that even if she didn’t catch up on any of the work, people would all still know what a thoughtful, bright, kind, creative, loving person she is. And that it wouldn’t change how much Carl and I love her from her ear tips to her toenails. She was able to laugh a little and breathe a little and we looked through each item she had to do. She finished most of them and felt much better about it all as she went to school the next day.

Sarah had her first swim lesson as a Turtle 2. It went well and it was so different seeing her in goggles. I got a call from her swim school saying that they only just realized she is 15 and that technically their programs for kids stop when kids are 13. I pushed back because she is so clearly still a kid and fits well with the kid classes. I don’t understand why they can’t just look at her specific situation instead of going by a general policy. I’m waiting to hear if they will make an exception for her, but at least they are allowing her to continue while they make up their mind. If they don’t allow her to continue as a kid then I can sign her up with them for adult lessons but then there aren’t the fun caps and animal designations. 

Sarah has been having fun pretending to be Mrs. Potato head from Toy Story 3 in which she temporarily loses an eye. One day I came back from a short errand to find Sarah wearing a top hat and sunglasses and claiming to be Mrs. Potato Head. Yesterday she often wore a striped baseball hat and sunglasses, telling me she was going to the pool with Granddad. I love how I never know what to expect about how my kids will be dressed or who they are pretending to be.

Amy and I dyed her hair on Monday with purple in the strips of hair just next to her head. I don’t understand what it is about her hair but it does not hold the dye the way we expect. It washes out after one wash instead of lasting for a month. So Thursday night in addition to the extra homework we did the dye one more time since her picture day was on Friday. She did have lovely purple framing her face for Friday morning. My purple is nearly gone, also not really lasting the month I expected, but that is ok.

Sarah and I came up with a song for bedtime, to the tune of “Summertime” from Porgy and Bess. When she and Amy were little I used to sing, “Diaper time, and the livin is easy” but I always had my lyrics say it was ok to cry, where the original song says not to cry. Our new song, which Sarah belts out loudly and clearly, is

Bedtime and the livin’ is easy

Fish are snoozing

And the moon is high

The lights are low 

And the clock is ticking

So come on baby

Close your eyes

Amy isn’t feeling the best today. Last night she was supposed to have a sleepover but ended up needing to come home because of feeling sick. So any good vibes are welcome. She is still sleeping now.

I hope you are all well. 

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. 

August 28: Health Mysteries and the Start of 8th Grade

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.

August 21: Late Buses, Bike Trouble, and Schedule Stress

Amy started 6th grade! The bus was 12 minutes late on her first morning, meaning she arrived at school late. While not penalized for such, she was disappointed to be late on the first day. Little did we know the lateness this bus could truly achieve. She was 50 minutes late coming home!! For the second and third days the bus was less late in the mornings so she got to school just in time, and it was only 35 minutes late in the afternoons!! I am making myself wait for a few more days for the bus company to get its sh*t together before I unleash mama bear. Amy thanked me profusely for telling her to pack multiple extra snacks along with her lunch. Her lunch and recess period is from 10am - 11am each day, but dismissal is at 3:50. That is a very long time to go without food and, if she hadn’t had snacks during the long wait for the bus, intolerable (from my perspective). Still, even with snacks, when she gets home she is starving. I know when I go too long without food then when I finally do get food it takes my body time to realize it has been fed. Luckily her school sent an email saying that from now on kids can bring fruit to eat at 1:30 and the school will also provide fruit for those who don’t bring it from home. (Didn’t they have this same timing situation last year? Why was this not a policy communicated and implemented day 1?)

The other issue about the bus timing is how to make the rest of our life work as planned. On Mondays the girls have swim lessons at 5:30. We need to start getting ready for the swim lessons at 4:45 in order to be on time, and since it is only a 30 minute lesson we really want to be on time. If Amy gets home at 5:15, as she did on Wednesday, then that does not work. If she gets home at 4:45 as she did on the other days, she will have to run home and immediately get ready for swimming. Easy, you think. Just pick her up from school. Ah yes. That is what I will do tomorrow because it is easy. But, in mid-September Sarah will have a piano lesson on Mondays from 3:15-3:45. Essentially, as soon as Sarah gets off the bus, I whisk her into the car with a snack and we head to her piano lesson. We then get home around 4. If I need to get Amy from school then I can’t get to her until 4:15, so she would be waiting for 25 minutes. Then we would get home at 4:30 if we are lucky with traffic, and change for swimming 15 minutes later. I know that short turn-around time is not ideal for either kid. I could bring swim gear with me if Sarah and I go from piano to getting Amy, but then that means an awkward 75 minutes with nowhere to be before swimming. The easy fixes of changing the piano day or swimming day are not actually options. And both lessons are important. Now if Amy’s bus could get its sh*t together all will work easily and well. I just don’t like needing to gamble and trust something that has so far proved unreliable. 

I know from past years that the first few weeks of school can have bus debacles and be super stressful in that regard. I had forgotten how much that stress fills my body. Sarah starts school on Thursday. I am hoping we have the same driver or set of drivers from last year so that maybe it will be reliable from day 1. Her pickup time has moved a bit earlier so she needs to have her shoes on and be ready to walk out the door by 6:50. Amy doesn’t even wake up until 7! 

Sarah continues to have too much phlegm on some mornings, meaning that she is spitting it up and feeling crappy. Then it passes and she feels better. We have not been successful at getting her to drink more water, as the doctor had suggested. I have debated for a while about making dietary changes, but enough is enough. It is time to try something. So we are in the phasing out stage with gluten and dairy. Since we still have foods with gluten and dairy in the house, I’m not being extreme in telling Sarah she can’t have such items. I just won’t rebuy them. I will start making more food from scratch again. I really hope this helps because as things are it is rather untenable. This morning Sarah has too much phlegm and I keep thinking about how I don’t want her to have such a morning on Thursday or other school days. It is no fun for any of us.

Sarah and I have not had the greatest week. I just feel grumpy, frustrated, and impatient most of the time when she says, “Why we not talk about hitting people?” Or “I’m not going to poke you in the eye because you love me more than cheese. (Or because I am wearing rings)” To the first I say, “we can talk about it if you want. We just don’t actually hit people.” (Or poke them in the eye or push them, etc). To the second sentence I just don’t understand the logic and that is what gets me most frustrated. She can tell I am frustrated and often says, “Oh. Ok. Let’s talk about crocodiles.” But that doesn’t last very long. I have felt like such a rude, grumpy, snide mom and yet haven’t been able to cry or journal or reason my way into feeling a different response in my body other than full annoyance. I also haven’t responded calmly or kindly to Sarah’s various whining protests about the lunches or dinners I put forth or times when it is time to go and she doesn’t want to get ready, but tells me so with loud protest. I just feel like I want to turn in my parenting badge and tap out of this whole situation. Then I feel even more mean and rotten. I am both desperate for school to start for Sarah and leery of it starting because then I get to worry all the time about getting a call that she isn’t feeling well (see: Phlegm). 

Gregory came for his session with Sarah on Friday. Usually he and Sarah go to her room for time that is just the two of them. This time we all stayed together on the porch and chatted. It was refreshing and humbling to hear Gregory be relaxed and easily responsive to all of Sarah’s inquiries and statements with which I struggle. It was an inspiring model, but I haven’t been able to emulate it.

On the plus side, Amy is teaching Sarah to play solitaire. Sarah is paying attention and following Amy’s directions. I’m so impressed with both of them because that isn’t something I would have attempted to teach Sarah or thought she would attend if the directions were from me. 

One night I attempted to correct Amy’s grammar. She often says, “me and…” when really the sentence should be “… and I.” She and Carl and I debated and discussed various different sentences and grammar rules. I brought in the notion of the Royal We. Amy then won the evening by asking, “What is it when you say ‘we’ but you mean Dad?” 

The week held one other misadventure and that was Carl’s over-the-handlebars fall from his bike on Monday morning. He is relatively ok, all things considered. His phone and bike gps computer are not. His phone took the brunt of the impact to his thigh, so he probably escaped quite a bruise there, but he does need a new phone. He pulled a muscle in his back so has had a stiff and uncomfortable week, in which I suddenly became the strongest and most capable adult in the house for the first time in months. 

May your buses be on time and your phlegm be minimal.