March 31: Florida, alligators, and Easter

 We are flying home today after a wonderful spring break in Ft. Myers, Florida. One day Sarah told Carl that he was wearing a sleeveful shirt, in contrast to her own sleeveless shirt. She also happily wore her new socks with foxes on them every time she wasn’t in flip-flops or barefoot.

We spent many hours on the beach and at the pool. The wind was quite strong a lot of the time, especially on Thursday when we went to Sanibel Island. That day Carl and I knew we needed full vigilance and one-on-one attention if the girls went in the water. Sarah opted to stay sitting in the sand. Amy wanted to be in the waves, which were the biggest and most sideways we had seen. Carl went with her and they had a great time getting moved down the shoreline by the waves. They would walk about a block or two away from where I was sitting to enter the water and then get out three blocks away the other direction. Even though Carl was with Amy, I kept a close watch on both of them. On their last excursion they decided to go a bit farther before getting out and were surprised to discover that instead of the current easily bringing them towards the shore as it had been, it suddenly wasn’t. They had to work a bit and swim like they meant it to get in. By that point I was starting to wonder and get grumpy, thinking they were just staying longer for fun but also contemplating what I would do if they needed help. All was well and they did get out so we could make the long drive in heavy traffic to get off of Sanibel. That night I was up for a while imagining all of the ways things could have gone wrong, feeling all of the fears belatedly. 

When we go on vacation, Sarah often suggests getting flowers for me, because we did so once many years ago. It has thus become tradition to get a bouquet that we can actually keep out in easy view instead of hiding it in a cabinet so our cat won’t eat it. Amy promptly pretended to be a big cat trying to eat the roses and then hopping off the counter with her cat butt held high. 

One discussion ended in tears of laughter. We were talking about some friends we could maybe visit briefly this summer. Carl said he thought the kids were about Amy’s age. I said, “Oh, I think they are a bunch older… like 13.” I meant it honestly, not as a joke, but then collapsed in deep laughter given that Amy is 13!

Sarah was in fine form a few hours after having a big meltdown that Carl fielded while Amy and I were beachfully unaware. It was helpful to have Sarah in her sparkliest mode while we waited at a restaurant for a long time. We knew it would be a long wait but I underestimated how much I should have bundled up given the breeze. I was freezing. I was also grumpy because that is sometimes what I do when things don’t make sense to me. The restaurant didn’t take reservations but you could call ahead to get in the queue. We did. They said the wait would be two hours but to show up in one hour. Why?! I cannot comprehend the reason I needed to be there in the chilly breeze instead of snug in our place a short drive away. While I was being cold and disgruntled, Sarah was doing her version of cartwheels and running around with her arms stretched out, saying she was a super hero. During dinner, which was delicious enough to make up for the wait and incomprehensibility, the table next to ours emptied and Sarah found it hilarious when the staff cleaned the table and the food on the floor. She was laughing so hard she could barely get her words out. 

Yesterday we took an airboat ride to see alligators! We saw so many alligators of so many different sizes. We saw a large one snapping its jaw, we saw all sizes swimming and sunning, and Amy and I were beside ourselves when we saw a cluster of babies. In the gift shop Sarah was a goof, hiding in a rack of shirts so all we could see were her legs and feet. After that adventure, Sarah wanted to nap, so Amy and I went to the ocean. Amy was her usual mermaid self, and the waves were back to their normal rather gentle selves. Once we got cold we made our way to the hot tub and pool. Amy then made two new friends, much younger than herself. I think they were five. All of them had a great time, and the parents kept thanking Amy because their kids were having such a blast. 

Easter morning began as most vacation mornings, with Sarah sleeping in all the way to 6:30 and Amy sleeping until 8. Luckily Sarah didn’t notice anything odd as she crossed the living room to get to our room to hang out, talk about foxes, and watch her show. At 8 I told Amy there was a mess to clean up and she got a knowing gleam in her eyes. Amy gracefully found many jelly beans, plastic eggs, and chocolate eggs while leaving many that were in plain sight for Sarah to find. Carl Bunny hid items in varying levels of difficulty from over easy to eggspert. The final hardest items were hard for me to find too. Once I saw them I left them for Amy to find. They were some of the best hiding spots I have ever witnessed, including a sparkly pink foil wrapped egg nestled in a pink rose. 

May you find all of your eggs.

March 24: A Big Week

This was Amy’s big week, starting with her birthday and ending with her talent show at school, for which she was an organizer and performer. She had rehearsals during and after school, and then the performances were Friday night and Saturday morning. She and two friends did a gymnastics routine, elegantly avoiding any collision with the grand piano that was on the stage. 

Monday was a big day for all of us. It was my shared snowy birthday with Amy and it was the usual packed Monday with Sarah’s piano lesson, Amy’s art class, and Sarah’s evening rehearsal. I received a wonderful massage that thoroughly ironed me out, and then had lunch at a favorite restaurant with a favorite friend. Amy’s dinner was one of her favorites, but not immediately. When Carl picked Amy up from art class they somehow got on the subject of broccoli pizza. He made her broccoli pizza as a joke, with a huge broccoli stalk on top of a piece of cold pizza. Then he helped her assemble her actual dinner of a taco. Just as he was making her 3D pizza, she was drawing a picture of broccoli pizza for him. Since she doesn’t like broccoli, this seemed like a gross creation from her perspective, but the rest of us thought it looked tasty. 

As I continue the process of closing my massage practice, I have been emptying my office. I’m feeling quite pleased with my inspiration to change our family room around so that there is room for my office desk and chair in a corner with a window in the front and to the side. This is now Amy’s art desk and I spent hours organizing materials, moving them to new locations and sharpening tons of colored pencils, and making piles of things to donate. Amy loves her new desk when our cat actually vacates the chair long enough for Amy to occupy it. 

We are having a lovely visit with Mom-Mom and Pop-Pop, complete with snuggles, talk about foxes, cat videos, and a failed attempt at making spectacular Easter eggs. I saw a video online about swirling food coloring in whipped cream and putting the hard-boiled eggs in that to make them beautiful and swirly. Epic fail. Some of them have tiny tinges of green, blue, or red. But mostly they have slight tinges of brown. Nothing is vibrant, swirly, or dramatic. 

The biggest thing on my mind and heart is rehearsals for Sarah’s musical. I am wishing I had said no to the whole thing as soon as I learned the rehearsal hours and that I would be her support person. Monday she lasted all of 20 minutes before wanting to be done. She hadn’t gotten a nap so perhaps I could have predicated that she wouldn’t last long. But the show is a month away, the dance routines are fast and complicated, and she never wants to stay the whole time at rehearsal. I felt so drained and awful about it all on Monday that Carl took Sarah on Thursday, with the explicit goal of lasting the whole time. He talked to her a lot about how if she actually wants to do this thing she needs to be at rehearsals, but that she can still change her mind if she isn’t having fun. She continues to insist that she wants to do it. Thursday they did persevere and she made it through. Carl is taking her to rehearsal this afternoon, which will also be a challenge. It’s not late at night but she hasn’t made it the whole three hours since her first Sunday rehearsal. When we try practicing the dance numbers at home she gets tired and whiny and doesn’t want to do it after just a few minutes of the simple moves. We have yet to get to the speedy complicated moves. I feel like we are in way over our heads and I just want to somehow get to May and maybe miraculously this will come together. But it won’t be a miracle. It will be us working our butts off along with Sarah. Part of the hard part is just keeping Sarah in the right mental and emotional state to do this. I feel so tense and anxious about this that I don’t feel like a good helper at all. Tomorrow I start a zoom support group for parents like me who have run Son-Rise Programs, so we want to be in that mindset but have challenges as all parents do. I certainly have a challenge and certainly want help to keep myself mentally clear. Basically, Carl and I realized we need to keep working towards the goal but always with the flexible ease of being willing to have Sarah drop the musical at any point. But whenever she starts protesting I get all tense too. This is hard. I know that we can do hard things but I’m not sure I can do this hard thing.

March 17: Realizations and Celebrations

This week has been full of realizations and celebrations. As Sarah and I drove home from rehearsal on Tuesday, not making it to the end of rehearsal and only making it as long as we did because I let Sarah look at pictures on my phone while I stood in for her and took notes on blocking, I had a realization. I was contemplating my stress around rehearsals and my judgements of Sarah. For a nanosecond I let go of the judgement and really just felt love and appreciation for Sarah. In that precise moment she reached over and gently rubbed my shoulder and then gave my arm a kiss. I do not think the timing was coincidental. I think it was because I got clear and she could feel that. For all that I sometimes may think she is unaware of what is going on around her, what if the opposite it true? What if she is hyperaware of the nuances of people’s feelings and thoughts, so much so that it is too much to manage? In the old days in the Sarah-Rise room I certainly noticed the correlation between my energy and clarity and Sarah’s responsiveness to me. I am ever striving to be more clear with my love for Sarah and this was a good reminder that it is a self-serving endeavor as well. I actually get more of the connection I want if I truly let go of needing her to be anything or anyone other than who she is. 

The celebrations for Amy’s upcoming birthday have begun! Friday after school, two of Amy’s friends came over to help her decorate the cupcakes I had made, and they did an amazing job. They cut open many of the cupcakes to hide caches of decorative balls. Or, as Carl and I discovered, two of them were filled with candy eyeballs! Why did we happen to pick the only ones with eyeballs?! Using modeling chocolate, one cupcake sported a cat butt. Or at least that is what they were calling it. Amy made a topper that looked like a black cat, and other cupcakes were topped with paw prints, rainbows, or sprinkles. 

Friday night we had pizza and started watching a movie. With Sarah, it usually takes two or three nights to watch a movie and we still have to encourage her to be quiet. I got a special dessert from Whole Foods since we were saving the cupcakes for Amy’s parties. The dessert was underwhelming, but having a candlelit moment with Amy and I singing "Happy Birthday" to each other was heart-filling. 

Amy’s first party was yesterday at Urban Air, a trampoline park with a zipline and obstacle course. She had a great time and played hard. Normally napping is against her religion unless she is in the car. A minute after I started to drive home, she was out like a light. I took a circuitous route home to ensure that she got a nap if she decided not to continue it at home. In actuality, she did nap at home too, as did the rest of us. I think we were all out for almost two hours. 

Almost every morning when Sarah gets on her bus, I hear her saying, “I went to Jump again last night!” I keep meaning to tell her driver that I assume that is a made-up trampoline park or something that he mentioned, but that she hasn’t ever been to a place called Jump. At least tomorrow when she tells him she went to a trampoline park, it will be true! She jumped a lot and had a great time. 

After our collective naps, we prepared for party number two. Amy invited a small number of friends to join her for dinner, a movie, and a sleepover. One of them gave her a bracelet with various word-beads. All of the words described Amy, and her friend explained all of Amy’s wonderful qualities. I love how sweet, kind, and loving Amy’s friends are. I love how they see her and I love that she shows up as her real self with them. It is beautiful. 

Amy had requested tacos for dinner so I made the customary array including a vat of guacamole. Amy loves guacamole so an entire avocado’s-worth goes in her taco. After dinner and a round of cupcakes, the girls settled in to watch the second Hunger Games movie. Meanwhile, Sarah said she wanted to hang out with Carl. I folded laundry and enjoyed hearing Carl and Sarah in her room playing their guitars. They sang about foxes, about Not a Boxes, about blue hats and green hats and purple cats. At one point Sarah started saying she was Adrian from Bandits on the Run and that her string was breaking. When the Bandits had their Pittsburgh concert, Adrian’s string did indeed break or come loose and yet somehow he miraculously fixed it within seconds while still strumming. 

Sarah continues to love foxes, including Freddy the Fox, as she has named the small fox emblem  on Carl’s winter coat. When Gregory was with her on Friday, he spent half an hour creatively coming up with new responses every time she asked “what is a fox?” It was beautiful to behold such dynamic presence and fresh energy around a topic where I can stagnate. 

When Anna was here on Wednesday they created cue cards to help Sarah with the musical when she has to be onstage paying attention to, and reacting to, the scene. Anna translated each actual scenario into something Sarah would have a real reaction about, such as things pertaining to her bus driver. Brilliant! 

Lots of love to all of you. May you feel celebrated for exactly who you are.

March 10: Biking, Bandits, and Bears

Sarah rode her bike!! By herself!! Without training wheels and without Carl holding on!! For seconds at a time! She pedaled a bit, touched her toes briefly to the ground, and pedaled more, repeatedly for several seconds!!! As Carl and I celebrated her we looked at each other and affirmed our motto regarding Sarah, “it’s not if, it’s when.” 

Sarah loves album covers and her latest love is the New Republic “Native” album with various animals including what I think is an owl, a buffalo, and a mountain lion. Sarah really wants there to be a bear. As we talked about it one day and she pointed at one animal I said, “I think that is an owl.” She responded, “maybe I will call it a bear.”

Foxes are Sarah’s biggest new love. I’m not sure what kindled her interest. I know a few weeks ago when her bus driver sneezed they had a good time pretending it was because he was allergic to the elusive attic fox as they pretended to drive through an arctic jungle. Now Sarah loves saying the word “fox.” It is the first word she says when she wakes in the morning or from a nap. She follows it by asking me, “what is a fox?” Sometimes I ask her what it is. Other times I come up with various descriptions such as, “a mammal,” “a woodland creature,” or “an animal with a fluffy tail.” When Anna was babysitting on Wednesday, I was in the kitchen and only half paying attention to what was being said, but I heard Sarah say “Exit has the letter x… can you think of any other words with the letter x? … FOX?” It was such a hilarious and beautiful set-up that Sarah created to lead to her favorite word. 

Roughly eight years ago Sarah was evaluated by the public school system to determine her placement in a classroom if she attended public school. That wasn’t the path we took for her but those records are part of her IEP which is renewed and revised yearly. The IEP is new each year but the evaluation hasn’t been repeated until last week! And that was only because we asked for it since it is needed for her to have a supports coordinator in place for when she turns eighteen. I had to fill out many forms too, along with an autism scale questionnaire. I hate such forms and questionnaires that somehow take my wonderful sparkly amazing daughter and put a negative slant on her abilities or lack thereof. The question I really couldn’t stand, but had to answer, was for the autism scale so I had to rank her as “never” up through “frequently” with options in between. The statement to rank was “understands why people don’t like him/her.” What the actual fuck? Firstly, do people not like her? I’m not aware of it beyond how one could generalize that nobody is universally liked, but why would you even say that? Secondly, if someone doesn’t like her, I hope she doesn’t know it!! And what are they assuming about who she is that there are things a person couldn’t like and she would know what those things are?! This was just the most egregious of the questions. I’m glad to leave it in my rear view mirror and not look back. 

Amy had the first of many upcoming birthday celebrations, enjoying her Birthday Bash Sleepover at Anna’s. When Carl went to get the girls yesterday morning he was greeted not by Amy, but by Effie from The Hunger Games. Amy was incredibly made-up so she didn’t look anything like herself but was all Effie. 

We had a wonderful week of concerts. On Monday Carl and I saw Bandits on the Run at Club Cafe. The girls couldn’t attend because of the age restrictions, but I recorded some songs and the girls watched their own virtual concert last night. Sarah quickly got up to dance and then grabbed her own guitar to jam along with the Bandits. For those who may be new to my updates, Adrian from the Bandits used to volunteer in the Sarah-Rise program. What is impossible is that that was roughly twelve years ago! 

Friday night Carl and I went to a Josh Ritter concert. It was just Josh solo rather than him with his band as we had seen him in Philly. He was playing songs that are works in progress, along with the usual favorites. It was a great show but the venue isn’t one I would go to again unless it is a favorite artist. It was at the City Winery and the tables are packed very tightly so good luck if you have to get up to pee. Also, to allow everyone to see and not have their back to the stage, everyone is sideways to the stage so you have to twist to see. My neck was not happy after 90 minutes of that. 

Anyway, yesterday I had a wet drive to see my dad and stepmom and brother in Delaware. It rained across the entire state of PA all day long. At least I had good music to listen to, playing Bandits on the Run and Josh Ritter as the miles sped past.

March 3: Rehearsal Stress and Screams

Remember when I wrote I was having more relaxed space for my nearest and dearest? I’m not sure where that space went. If part of that newly acquired space was due to my expectation of a more open schedule, then perhaps it is no surprise that a completely packed week of work (despite some cancellations and no-shows), plus piano, rehearsals, art class, and Carl being away would not contribute to a sense of spaciousness inside me. Perhaps it was also that Sarah and I got our periods one day apart. Whatever the reason, Sarah and I had many screamy moments together. And we always bounced back in relatively short order, as we do. 

Rehearsal last Sunday went well enough, until Sarah decided she was done and was having none of my trying to prolong things. She did even lie down on the floor in protest in front of everyone. In the past somehow those prone moments always happened in the hall when it was just us. Luckily I was able to get her up quickly, by acquiescing to her demands. This is not how I want things to go. We left and I was very grumpy. As we walked to the car Sarah kept apologizing to me, and yet clearly wasn’t able to rally to stay longer in the rehearsal. At least on Monday and Tuesday after rehearsals, which we also left early, I was able to focus on the good job she did while she was there instead of focusing on what we were missing. 

Perhaps it is too early to predict any desire to participate in musicals next year and the year after, but I am not sure I can handle it even if Sarah wants to. I have myself feeling very tight and stressed about the whole thing and responsible for making it happen. In theory I understand that me being a tight ball of stress about all of this doesn’t help anyone, but understanding that and relaxing are two different things. Realizing that part of the issue for the evening rehearsals is that Sarah’s internal body clock still tells her that 8:30 is bedtime, I have made it my mission to gazooble that body clock. Instead of napping only on weekends and rehearsal days, I am encouraging Sarah to nap daily and then doing my best to keep her up until 9:30 or 10. Or even anything beyond 8:30. Eventually rehearsals will go till 10. Right now they go till 9:30 but we never make it that long. Eventually when they do full run-throughs, we will have to make it. And the performances will certainly go until 9:30 or 10. 

Sarah loves rings but sometimes plays with them or takes them off in anger or takes them off prior to leaving for school. One morning she was removing her rings to get ready for her school day and one of them slipped and bounced away. She said it rolled under her bedside table. She was very upset. I was very upset. Her bus was due to arrive soon. I promised I would keep looking even after she left for her day. Somehow, miraculously, I did find it. . . inside her spider man slipper!! I wish I was keeping a written tally of all of the places I have found her rings because the list is long and impressive. As the saying goes, it’s not lost till mom can’t find it. 

The people who started The Son-Rise Program recently released a documentary, linked below, called “5 Days to Live.” I don’t know if you remember almost two years ago I was sad because Bears was quite sick and expected to die soon. Well, he didn’t! He is still alive and thriving. The documentary goes through his journey around a severe cancer diagnosis and being in hospice, through his experience of turning that around. The beginning is also about his and Samahria’s journey with their son that led to The Son-Rise Program. I highly recommend watching the documentary. It is beautiful and inspiring. When I remember some of the perspectives they share I can even breath a little more easily regarding rehearsals for Sarah’s school musical!

May you find all of your metaphorical rings no matter how sneakily they hide.

https://5daystolive.com/full-length-documentary/