February 25: Brought to you by the letter C

This update is brought to you by the letter C. C for Covid. C for construction. C for car. C for cuttin’ a rug.

Sarah didn’t have school on Monday because of President’s day, but she did have the sniffles so I tested her for Covid and that is what she had. Before testing her I had napped with her, our foreheads touching! And yet, miraculously, I continue to test negative. Sarah was quarantined through Friday and we all masked. Luckily her only symptoms were congestion and a bit of a cough in response to the congestion. She was heartbroken to miss school, especially her bus rides, but otherwise she handled the week well and enjoyed multiple naps per day.

There has been a ton of construction going on in our neighborhood lately as the city replaces lead water pipes. Wednesday night when I got home from seeing a client (masked of course), there was hardly anywhere to park because of all the cones and people from other streets parking on my street. I thought it would be a great idea to save the few remaining spots for other people while I parked in our backyard and charged my car. I didn’t realize that the next morning before I needed to leave for teaching, our street and alley would be packed with construction vehicles so that asking them to move so I could retrieve my car really didn’t make sense. No problem, I thought, I’ll just walk a few blocks away and get an uber. I wasn’t thinking about how my phone only seemed to have SOS mode, so that when I tried to summon an Uber, I couldn’t. As I quickly retraced my steps to take Carl’s car and make him bus to his destination, I saw a neighbor friend and called a hello to her. She asked how I was and I ranted about my situation. I wasn’t expecting a solution, but she offered that I could take her car! As I have noted many other times in my life, it really works out well in surprising ways to share the details of my problems with others. 

Sarah’s school allowed her to attend the semi-formal dance last night even though she had missed school on Friday. I know some schools have rules about such things so I was relieved she could attend because she was really looking forward to it. The flyer for the dance gave specific rules about how to dress, including that girls must wear dresses (not too short or tight or with holes). They said we could submit a picture if we weren’t sure something would be ok. I sent a picture of Sarah wearing a brushed velvet long-sleeved white shirt with black dress pants. I explained that she is really not a dress-wearing kid. They said her pants and top would be fine. Looking back on that, I imagine the person I emailed must have wanted to laugh at my concern because clearly she was presentable and nothing was too tight or too short. They also clearly weren’t enforcing any of the rules. I attended the dance because I knew Sarah might want to leave early and to be her support person if needed. I was that old fuddy-duddy mom being shocked at kids these days!. The tightness! The shortness! The sunglasses in a room so dim I could barely get a good picture! The music that was too loud and un-danceable!

Before the dance Sarah and her friends met at one friend’s house for pizza and extra dancing and pictures while the parents enjoyed hanging out too. I feel so lucky to be part of this group. Sarah now has a group of friends! She really belongs! In a way I didn’t know was missing until we had it. Seeing her at a table with her friends at the dance warmed my heart to no end. And seeing them all greet each other and enjoy being together is beyond compare. I also now feel like I have a parent group pertaining to Sarah that I haven’t really had before. As I was the only parent at the dance, it was fun to text the others updates about what was happening. Our girls were the first on the dance floor! And there were times they held hands to dance in pairs or a circle. This is so much a dream come true. A dream that I didn’t let myself even notice because it truly would have been ok if it didn’t happen. But oh how wonderful to feel like maybe Sarah has a group that could be her group for the next few years and maybe beyond.

Yesterday was a big day because before the dance we went to Chuck E. Cheese to meet the local Higgy friends so Amy could hang out with other kids with scoliosis. Amy had a great time and even got to see her Schroth therapist who showed up as a surprise for all of them, having worked with most of the kids. Sarah had a great time too, mostly watching other kids and games. There is so much flashing sensory input I always feel a tiny bit worried about her having a seizure in the evening, which I also worried about given the lights at the dance, but thankfully all was well. I enjoyed talking with the other parents, one of whom I hadn’t met before but we realized that Amy and I were always leaving Schroth appointments as she and her son were arriving! Carl is away on a skiing trip with friends so he was not part of our big day, but was having a beautiful day of his own. Since he is away, Amy went to friend's house for a sleepover last night because Sarah and I were out late. The sleepover had a theme of Hunger Games and a good time was had by all. 

A week ago I deleted my massage website. I had a tiny pang, as I do with many moments of realizing that chapter is over, but it’s not a pang of wanting to continue. It’s more a pang of farewell to a thing that used to be more meaningful for me, but isn’t my thing anymore. The timing was notable, without my even intending it to be so. Two days after I deleted my massage website, Websy Daisy began creating my website for Watching Sarah Rise. Eventually it will have links for pre-ordering the book, but I don’t have those yet. I do however have a finalized cover! And you can see that on the website. I absolutely love my cover. It is a picture we took of Sarah, but the publisher tweaked the lighting.

Love and health to all of you.

https://www.watchingsarahrise.com

February 18: The End of an Era

This has been a monumental week, although in paragraph form it will seem short. 

On Tuesday Carl and I had one of the best days of our lives. After the girls were on their way to school, we drove to Delaware for a short visit with my dad and stepmom. Then we drove up to a hotel in Philadelphia, had a delicious dinner in a restaurant, and arrived just as the doors opened for a Josh Ritter concert that had general admission. That meant there were no reserved seats - no seats at all actually. We were standing at the very front, as close as a person could be! And because it was Josh Ritter, it wasn’t even too loud at all. We didn’t need ear plugs. At most we were ten feet away from him. Unbeknownst to me, people buying tickets online were invited to submit a dedication that Josh might read during the concert. So there we were, smiling so much our faces hurt, and then Josh read Carl’s dedication to me!! And then after the concert the person behind us said she happened to record that moment and sent us the recording!! And then as we left the venue we were given two free Philly pretzels. If you are from Philly, you know how awesome such a gift was. Earlier in the day I had been saying that to make it an absolutely exceptional day I should get an email with my possible cover designs. I did in fact get that email with possible cover designs as soon as we got back to our hotel after the concert!!! I mean!!! Can you even believe such a perfect day?! The next day we enjoyed a short walk with Carl’s cousin before driving home in time to meet Sarah’s bus. 

In other news, I have come to the end of an era. Just are surely as I knew 26 years ago that I wanted to go to massage school, I now know it is time for me to close my practice. I have juggled many balls for many years and it is time to put some down. I will miss my clients and the relationships built over many years. Some of my clients have been with me since 2000 when I started my practice, sticking with me through my Alexander Technique training, and through my maternity and hipternity leaves. But it is time to be done. I can already feel myself breathing more fully and having more space for those nearest and dearest to me, even though my schedule has yet to actually slow down. It is the promise that it will that helps.

Is there a word for the surprise of realizing you won’t in fact get to relive any earlier moments of your life? I think some part of me always expects that I will do it all again, like watching a movie a second time. I am now slightly startled to realize that such a big chapter of my life is over, and that I won’t be going back and doing it again. Perhaps this just goes with getting older and I am surprised that such a thing is happening to me.

Now about the children...

Last Sunday Sarah had her first rehearsal learning choreography for All Shook Up. She did beautifully, and I also asked the director if it could work to have some of the other students give her tiny tugs to help her get where she needs to be in a timely fashion. He said that would be fine if we need it. Sarah did want to be done before the rehearsal was over but somehow we were able to take enough tiny breaks to have her persevere. It is ever an exercise in keeping my own equilibrium, or at least not getting too off balance. 

Amy has really been impressing me with how she takes responsibility for wearing her scoliosis brace. I still have to nudge her to do Schroth exercises, but even that feels like it is edging into the realm of her taking more ownership over it. I have been considering locating an old-fashioned corset so that I can maybe experience what Amy lives within 18-22 hours per day. 

Yesterday Carl and Amy had a wonderful time going downhill skiing while Sarah and I took naps and read books and watched tv shows. Then Sarah and Carl and I went sledding for a bit. Sarah made some snow angels, but the snow wasn’t the right consistency to build any creatures. 

Love and free Philly pretzels to you.

February 11: Going Really Well/Not-Well

Rehearsal on Tuesday was simultaneously not great and really wonderful. How can something be both? Well, at first glance, it did not go well because Sarah was wearing her new windshield wiper shirt to which I had attached letters spelling out “windshield wipers.” She was so distracted by her love of the shirt and the letters that she did not seem to be taking in any of what the director was saying. When she did sing along a tiny bit, it was when the tenors or altos were singing, though she has been cast as a soprano. She was concerned that the letters on her shirt were coming off or she wanted to take them off. I was stressed. I knew she only needed to be there for half of the rehearsal because she was only in the first song, but we didn’t even make it through that portion of things. Sarah was tired and kept coming over to me or I would go to her if she spoke. We went into the hall twice. I wanted her to recoup and finish out the last ten or twenty minutes. She was not recouping. At one point in the hall she started to go fully prone in protest. I quickly told her she didn’t need to do that and we could go. She got up. I collected our things and we left. I was not very relaxed and she could tell. She was apologizing to me. I was apologizing to her. We made it to the car and then I realized. . . she had actually handled that whole thing incredibly well. For a night when she was distracted and not on her game, she kept her requests to leave quiet, she easily went into the hall with me twice. She didn’t actually scream on the floor. She didn’t disrupt the rehearsal. So really, it all went so well for not going well. Fingers crossed that today goes more smoothly. We did learn things for future rehearsals. Sarah needs a longer nap time, meaning I can’t have other things I am trying to do because she naps best and longest if I am next to her. She needs a shirt that isn’t distracting. Hydration may help.

For her birthday Sarah received a large lollipop and Friday night she delighted in licking it while singing the lollipop song. Meanwhile, Amy is being consumed by The Hunger Games, which she has been listening to as an audio book. Both girls are slightly consumed by their new phones. We got them phones because Amy’s iPod was on its last legs and I was increasingly wishing I had a way of communicating with her outside of school hours when she might be waiting for me to pick her up or waiting for the bus in the morning. Also, a few weeks ago there was an incident in Pittsburgh where a girl with special needs was dropped off for school but the school wasn’t in session that day. The girl was missing for many hours. I realized how terrifying it would be if something similar happened with Sarah, because her school isn’t easily near places where she could go for help. I wanted to have a way to track her and to call her or for her to call me in an emergency. We have Sarah’s phone programed so it won’t work for anything except to call us during school hours. So far, as soon as she walks in the door after school she takes out her phone and starts playing on it before she removes her shoes. We do limit her daily time with it so I’m ok with the magnetic pull it has as soon as she gets off the bus. 

Carl and Sarah practiced “Hush Little Baby” yesterday with Carl on the guitar and Sarah on the piano. Then Amy joined them and they played and sang songs from the musical “Six,” which is Amy’s new favorite soundtrack. Not to be outdone, our cat decided to nibble on the small puppet stage that Amy built out of a box, complete with theater curtains. Those curtains are apparently mighty tasty. 

I hope all of your things go well, even if they are not going well at all. May they go really well for not going well if that is the case.

February 4: Birthday Celebrations Galore

Sarah has a life-changing new skill: swallowing pills! For the past many years, twice a day, she has opened six capsules of an anti-seizure medication to sprinkle on a small serving of yogurt. When we travel this means I always need to obtain yogurt or a similar vehicle for the tiny balls Topiramate. One evening this week as Sarah was about to do her capsules, I saw an image of her swallowing them instead. I casually suggested the possibility, and she did it! There was no learning process. She just knew how to do it and did it. No more yogurt as a vehicle. No more tiny balls of medication pinging over the table as they miss the yogurt dish. This shaves minutes off of Sarah’s breakfast-eating time, which really helps on school mornings.

Sarah’s week was filled with more birthday celebrations. On Wednesday night we had pizza and cake with our local family members, and then last night we went to Max’s Allegheny Tavern for a dance party and German food with friends and family. Many of Sarah’s school friends were able to attend and my heart was full. There have been so many times in my life when I feel like a puzzle piece clicks into place. The first time was when I met my own best friends when I was 4 and thought, “Finally, here are the friends I have been looking for.” Another time was in my college dorm hallway talking to Carl before we were officially a couple. Witnessing the kindness and sweetness of Sarah’s classmates, I feel that same clicking feeling of, “Sarah is really at the right place” for school and with a peer group. 

For Sarah’s cakes and cupcakes I made fondant and decorated it using food coloring and edible markers. She loves tunnels, windshield wipers, red Xes, green arrows, and yellow Xes, so that was the theme for her cakes. She loved them and could have happily looked at them and pointed to her favorite things for many minutes before we served slices. If anyone ever needs a recipe for a delicious vegan, gluten-free cake, I recommend Chocolate Covered Katie’s recipe, but don’t follow the suggestion to add xanthum gum if using gluten-free flour. That makes the batter and result weird. Speaking of windshield wipers though, Carl was able to procure a t-shirt with windshield wipers pictured on the front and that has been one of Sarah's favorite presents. She wants the words “windshield wipers” to be on it too so today she and I will buy some iron-on letters and add them to her shirt.

If you want a great venue for a private party, I highly recommend Max’s tavern. If you want a good time on a Monday, I do not recommend getting a thyroid biopsy. That was my Monday. For a couple of months I have felt like something wasn’t quite right with my thyroid, as if I could feel it physically. After seeing my doctor, I was scheduled for an ultrasound this past Monday morning. They found two nodules and wanted to biopsy one of them right then and there. Of course there was the wait to contact my doctor and get the prescription because we live in a ridiculous society of insurance red tape. Also, who wouldn’t want to wait for an unspecified amount of time for an unpleasant procedure? When it was finally time I was numbed and sampled. I was so tense, filled with fear and adrenaline and holding myself completely still, that after it was done I was a crying, shaking mess. Luckily the next thing on my schedule was exchanging massages with a friend. Instead of an exchange, my friend just worked on me and I can’t imagine a more healing recourse after the trauma of the biopsy. The good news is the biopsy didn’t show anything. The bad news is they didn’t feel that they got quite enough of a sample, so I have to go back in two months for a repeat experience. Except this time I will take something to help me relax and Carl will come with me. 

For the rest of Monday I felt rather beat-up and delicate. I needed many good cries. For one of them Sarah came into my room and noticed that I was sad. She immediately came over to rub my shoulders, touch my head, gather my used tissues, and call “Aunt Jaguar” to come help. I have no idea who Aunt Jaguar is, but since Carl was working from home, Sarah returned with Carl Aunt Jaguar, who also listened to my tears. By Tuesday I felt much better.