April 26: Hedgehogs

I must confess that Carl and I are now completely addicted to doing crossword puzzles. It started with the ones in the newspaper, but then I got a book, and we can’t seem to put it down for long! We work on them together and thus get much farther than we would individually. It is an exercise in sideways thinking and brain flexibility. Once when we finally got a clue, I put my head down on the puzzle. Apparently, my forehead is as good as silly putty at picking up the print, so I had a crossword tattoo for the evening.

This past week was much better than the previous weeks have been in that it felt less stressful and exhausting. We are more flexible with our weekday schedule, no longer having times for art or gymnastics. I’m a bit sad about that, but it also does make things easier. Those activities still happen, but not always with both girls together. Sarah’s zoom meetings with her teacher went wonderfully. She even had a zoom session with Mom-Mom and Pop-Pop to do Ms. Sarah reads. She struggled a bit with how to turn the book so they could see the pictures and her enunciation tends to fall by the wayside when she is overloaded or excited or just reading out loud in general. Amy did a zoom gymnastics demonstration and had one zoom time with her school classmates and one Spanish class with Grandma. Amy had less school work than in previous weeks which really helped the days feel more flexible. I spent a lot of time each day reading or working on crossword puzzles.

One area of difficulty pertained to Sarah’s desire for Amy’s hedgehog nightgown. She has wanted it for weeks and we have spent many minutes listening to her feelings about it. I secretly ordered one for Sarah, knowing how unbearably impatient she would be if she knew it was coming. But then… she started asking me to see if any more were available. I pretended to look and order one, but then realized if it arrived that same day she would have erroneous expectations going forward. So I fessed up and ruined that day and the next for all of us! I should have just maintained that there were none available. Sarah became insufferable in her desire to have the nightgown NOW. Finally, after probably only 24 hours of waiting, it arrived. All was well for another 24 hours. And then… Sarah spilled chocolate ice cream on her new nightgown right before her Friday zoom meeting with her class! She was distraught that it had a stain so she wanted it cleaned right away, but she also couldn’t bear to be parted from it. Needless to say, she missed her zoom meeting. After 30 minutes of intense screaming and crying she was ready to bike on Zwift while she waited for her nightgown. She now wears a smock whenever she eats something that could result in a stain.

During the various nightgown troubles, Amy had moments of being absolutely amazing with Sarah. When I reached my limit, Amy somehow had room. She was kind and encouraging, saying she knew it was hard, but Sarah could do it. Amy also helped Sarah get things set for her Facetime with G. The girls have had many times of playing easily together and Sarah has started to sit in Amy’s room at bedtime while Carl reads out loud.

Often my exhaustion and stress stem from resisting how things are. I don’t want them to be that way! In many ways I have probably been resisting aspects of Sarah since she was born. Some of this resistance led me to work my rear off and brought amazing benefits, such as avoiding a feeding tube and running Sarah-Rise. It can seem like a tricky balance to accept how things are and work to change them. This week I have aimed to view Sarah’s upsets as I would a rain squall. They aren’t my fault and they will pass, usually in short order. Sometimes this helps and sometimes I forget.

When things get easier it is possible to forget when they were hard. It used to be a huge struggle every week to get Sarah to bathe and wash her hair. Now she (mostly easily) takes a shower multiple times per week and washes her hair all by herself. 

Sarah enjoys going for walks to the corner next the the playground because there is a bus shelter and she can watch traffic. She also likes gift bags so for one walk she brought an empty gift bag with her. She has also been enjoying playing with Amy’s American Girl doll when Amy is willing to share her beloved Joss.

Amy groomed all of our My Little Ponies, most of which were mine when I was younger. She then arranged them in a large parade. 

One night Amy led an art class, teaching us how to draw butterflies. It was fun to see the different personalities of our butterflies. Mine was grumpy and was tapping her foot. Sarah’s was perhaps Picassoesque. Carl drew multiple butterflies that each had a different wing design. Amy’s was the biggest and most carefully crafted.

Yesterday, there was a water main break on our street. Before the repair crew arrived, the girls had a great time splashing in the stream. Sarah also loved watching the repair crew while wearing ear protection. The drilling was so intense that I could feel our dining room table vibrate.

Olivia caught her first mouse! I’m glad that Carl and I were awake for it so it didn’t get delivered as a present. 

Lastly, we had a Facetime dinner date with friends last night and it was wonderful! It felt much more like really being together than I had anticipated. We even ordered from the same restaurant.

May your squalls pass quickly.

April 19

This week was about a year long. I have often felt entirely out of any energy or ideas to deal with Sarah’s fighting me/whining/yelling and Amy’s rigidity regarding cheer practice or gymnastics (all her ideas but with no room for Sarah to be herself). When Sarah starts her usual ways of protesting or pushing, I feel my energy drop into the lower half of me, as if I am half as tall as I was a nanosecond before. I have often found my way to the kitchen floor as my spot for giving up. Many friends kindly chimed in to tell me to be nicer to myself and lower my standards for myself and my parenting. I appreciate that reminder immensely. However, I don’t think that is the problem here. I think it is that I have kids (mostly Sarah) who are being rigid and whiney and yelling and not listening to me or they are listening carefully and doing exactly the opposite of what I say (eg spitting, fake laughing while blowing snot into the air, tossing colored pencils up repeatedly so they fall on the floor and the points break off, barging past me to get to the dryer to get an item of clothing that is somehow crucial at that moment). There was also Sarah’s party at 3am Thursday night, lights on, reading a book out loud at full volume, then coming to plead with me to help her find her book that was sitting in the middle of her bed, then needing her Gymkhana t-shirt that then had to be put in the dryer because it had been drying on the clothing rack and was still damp, then wanting someone to snuggle with her. I know there is a lot to be said for my own perspective and that I can control myself, blah blah crap crap craptastic crap. I know I am not the only parent reaching this limit. Another mom coined the term SeeSaw Rage about our frustrations over the app Amy’s school is using. More than usual I feel like I cannot hear one more utensil clatter to the floor or have one more person climb on me or I will scream. On the one hand the girls are amazing and sweet and doing things to melt my heart and on the other hand AAAAAAAAAAAAAAHHHHHHHHHHH!!!!!!!!!!! (A huge thanks to Carl for managing so much of the weekend so I can be in a quiet room by myself.)

The things that melt the heart…

 Sarah drawing musical notes on her white board while quietly listening to music in the family room. 

The girls piling onto me with hugs and kisses when I was crying because of being mistaken about when Sarah had a zoom meeting (I thought she had one. She didn’t. I felt foolish and that was the straw to break this camel). 

Amy hugging me so hard when I suggested a bakery gift for her best friend’s family, as if the gift was for Amy. 

Amy making her bed and being so independent with many aspects of her day. 

The girls playing together easily and happily.

Sarah watching Mr. Greg Reads each morning and following along with her own book and talking to him as if he was here, wanting to tell him about the weather or the patterns she sees or that she loves the book. It is beyond adorable. In fact, possibly making up for any difficult thing she has ever done in her entire life, yesterday Sarah wanted to make a recording of Ms. Sarah Reads. So Carl recorded her and it is so adorable. If you are a friend of ours and would like the link to see her in action, let me know.

Starting on Monday Sarah will have one zoom meeting per day with her teacher. This will either be amazing and the best change ever or this will make things even harder and we will have to abstain. Fingers crossed.

Some of the upsets this week were about Sarah desperately wanting a nightgown of Amy’s that has hedgehogs on it. Sarah is a blend of intense rigidity and surprising flexibility and those can coincide in a single moment. The hedgehogs were a must, but then Sarah was fine with using Carl’s old white t-shirt that Amy decorated with hedgehog drawings. The new creation is not at all like Amy’s nightgown except that it has hedgehogs, but somehow this is better than any other item of clothing that Sarah has, better even than her rainbow nightgown made in the same style as Amy’s nightgown.

I can be an odd mix of things too. I am simultaneously so tired of this current state of things and I am scared of the world opening up again. It’s not even the fear of any of us getting sick; that would be a separate fear. It is just a fear of needing to get people places on time and being my organized self from before. I realize I am organized now and that things aren’t any less stressful, but somehow there is still a fear of not knowing how to do my previous life anymore. 

On Tuesday I was part of a podcast called A Valid Podcast. In order to carve out a space that I could almost guarantee would be quiet and I would be undisturbed, I sat in my car. I was a bit cold and a bit nervous, but doing some Alexander Technique thinking helped and knowing that some family and friends were listening in real time also helped. Overall I think it went quite well and I even sounded like myself. My friend who runs the podcast and Unabridged Press is amazing and has such room in her heart, head, and being to think about people with various different abilities. She brings a professional vision and thoughtful perspective to all that she creates. I am honored to be part of her creation to expand awareness around living with disabilities. If you would like to listen, I come on after about 11 minutes.

Lots of love to all of you. Thank you for your love and support. 

April 12

Today I see two paths. One is where I embrace the day with energy. The other is where I wilt inwardly, dreading the weeks to come and wanting to hide. Usually I am already on a path and my job is to allow myself to be there, moving on when ready or required. It is odd to see myself at such a choice point and feel the differences so clearly in my body. 

This past Monday was a beautiful, sunny, relaxed, easy day. Until it wasn’t easy. Usually piano lessons have been relatively smooth sailing but this time Sarah and I clashed right before and during her lesson. I felt emotionally drained, tired, and empty for the rest of the day. Sarah seemed to bounce back to herself more quickly. In general, I’ve been letting myself cry more often, and I am reminded how much it helps me feel calmer and clearer. In theory I have known this all of my life, but it is easy to forget or not to make time for my tears.

I have had glimpses of the possible separation of my upset from Sarah. My exhaustion in response to Sarah’s upset isn’t actually about her upset. It is about mine. I’m exhausted from my upset. When I am upset that she makes a mess, it’s not about her making a mess. It is about my judging a mess to be bad. I feel hope about more freedom in my responses if I can continue to see the separation between such things. Friday morning I made donuts and Sarah wanted to help. At first I resisted and was saying it was for me to do, but then I decided it was ok if the batter slopped over the pans so I said yes. It felt as if I loosed a tight belt because I wasn’t resisting her anymore. She did a beautiful job with much less mess than I expected. I was proud of both of us.

In the pre-covid-19 world, we had planned on going to Florida for spring break. Since that couldn’t happen, the girls decided to make a pretend Florida in our backyard on a day that was warm and sunny. They wore swimsuits, played in the sandbox, stretched out on beach towels, and went to the ice cream store that I created when I heard them talking about such a thing. I made a menu with the options of fruit ice cream flavors and various toppings. They could choose banana, banana chocolate, banana strawberry, banana strawberry chocolate, or banana mango. Toppings included shredded coconut, chocolate chips, crushed thin mints, marshmallows, and graham crackers. 

For a few nights in a row, Carl created a hidden clues hunt for the girls, akin to a treasure hunt except the last clue led them to bed. Carl has also been reading the Gordon Korman MacDonald Hall books to Amy at bedtime.  If I’m not in the room I can always tell when Carl is done reading because of Amy’s loud wail of protest and her pleading for him to read more.

Pennsylvania schools are officially closed through the end of the academic year. While I expected this and “closed indefinitely” seemed quite similar, it still hit hard to see it officially and specifically determined. More tears. More letting myself wilt on the kitchen floor in a state of despair. Yet a small part of me wonders if I will miss this time when it is over because there is something wonderful about spending so much time together as a family. 

When I was much younger I often worried about not doing well enough in school and thus being held back. I think my fears about that have been reemerging in my anxiety over managing the distance learning plan from Sarah and Amy’s schools. It turns out that the grading for Amy’s school will be pass/fail and I’m pretty sure that the level of work we were doing before will be sufficient. Sarah’s teacher is flexible and understanding so I don’t feel pressure there, just some sadness that there is no academic requirement for her because she’s really not at that point intellectually. She does some reading, writing, and math each day, but it probably takes 30 minutes total. So I know this will be fine and that even if I get stressed we will actually do a fine job and no one will be held back. This all still feels surreal and I still have some inner resistance and want to hide in the tiny space under my desk.

Amy has been getting hurt more often than usual and Carl pointed out that maybe it was from a growth spurt so she doesn’t quite know how to operate her longer body. We had been speculating that maybe she had passed Sarah’s height. Yesterday Carl measured them, confirming our suspicions. Amy is officially taller than Sarah. While I have expected this for years and known it would almost certainly happen, it still feels like a big deal. I feel a bit sad about it, as if it is one more way in which Sarah is falling behind and won’t ever catch up. This is like standing on the cusp of a choice about my day. I am often on a cusp about how I see Sarah. I can marvel at how far she has come or I can despair over how far she has to go or may never go. It feels like a delicate balance to honor all of the feelings and then still choose the positive path. Speaking of how far she has come, Sarah has now biked approximately 600 miles on Zwift since the end of January!

Easter morning dawned with a very excited Amy bunny who came in to snuggle with me but was a constantly wriggling ball of energy. Once everyone was ready the girls began to hunt for chocolate eggs and jelly beans. It is wonderful how each year Sarah gets better at the hunt. This year the bunny was very sneaky so there are still some items waiting to be found. 

May you find love and ease hidden in plain sight.

April 5

How are you being? This is such a strange time. I never actually expected to have one of these historic moments in my lifetime, and yet here we are. Most of the time I think I am doing well, feeling safe, not feeling anxious, and handling things well. Until I’m not. I went grocery shopping Friday evening, attempting to cover my face with a scarf but it fell down as soon as I got in the store and then I didn’t dare fix it because then I would have touched my face. I was super aware of my fellow humans and keeping enough space between us. I didn’t realize how stressful that was until I got in my car and let go of some of the stress. It then took an hour to put away the groceries because I was wiping or washing each item and I had stocked up so I won’t have to go back for a while. Sometimes it has worked to get groceries delivered from Whole Foods, but the demand is so high that lately that hasn’t been a possibility. A friend recommended a farm group that delivers to my house. That feels like an amazing gift and possibly solves almost all food situations going forward. I can get veggies (though not yet any that the girls would eat), bread, eggs, cheese, meat, milk, and maple syrup. We are still in fine shape regarding toilet paper, but given that the paper product shelves everywhere are perpetually bare, I do have some concern. I wonder why corporate TP makers can’t start making their products available. If someone needs TP I don’t think they will care if it fits on their holder or if it is a gigantic roll fit for a sports stadium. I found a place in Nevada that makes bamboo TP and will deliver a box in May. Not that you all needed to know this, but I want to write down what things are like so I can remember it later.

Most of the time with the girls things are going smoothly and easily. Except when they aren’t. I know that they are both stressed by not having some of their normal routines and friends, but given that I am more stressed being a full-time mom, I don’t feel like I have as much space to listen to them. I can listen to tears easily, but not to Sarah’s screaming or Amy’s strict requirements in a given situation that to my mind doesn’t warrant such rigidity. I have also been harder hit by some of the new measures recommended or required by the governor of Pennsylvania. I’m so glad to have a pro-active governor who is taking these important steps, but that doesn’t mean I haven’t also had feelings about them. What surprised me is the level of feelings given that the rulings just confirmed my expectations. Schools and non-essential businesses are now closed indefinitely. While I appreciate feeling safe at home, sometimes I think I will just crack when Sarah whines or yells for the umpteenth time. The day after the news was published, I cried multiple times through the day when I didn’t expect to given that the amount of kid yelling was the same as usual. It just all felt too hard. We are now all supposed to wear masks when we leave the house. This last measure was decided after I did my grocery shopping, but I was thinking I would prefer to have a mask anyway. Amazingly, we have had multiple offers to make us masks. I feel quite loved and seen. People know that sewing is not my forte! I made the simple masks using cloth and hairbands, but the cloth is too thickly folded so I need to make adjustments. Friday night I didn’t sleep well because all of my thoughts and dreams were about masks and the anxiety of needing them. Lastly, apparently the past few weeks have just been practice Distance Learning for Amy. Requirements will get real and things will be graded when she starts up again after spring break. Oh good! Because we wouldn’t want things to ever stay the same from one week to the next so I could actually get my bearings and feel like I knew what I was doing! Grumble grumble grumble. 

I don’t have much going on at the moment that I could see as my own project or passion. The online options for continued Alexander Technique training or massage classes just feel like way too much to even contemplate. I do aim to do a little reading and a little work on my book each day, but even those don’t always happen. If I have a thing I’m trying to do then that can give shape to any down time. However, it can also lead to heightened frustration if I’m interrupted or not able to do my stuff. This has been a struggle since becoming a mom. If I don’t have a thing I’m trying to do, it is like standing nearby when the girls play or eat. If I remain standing then things will remain calm and peaceful. If I sit, then all hell will immediately break loose. I know that’s not really true or correlated, but it feels like it is.

I’m in awe of Carl’s ability to really play with the girls. Yesterday they played in the backyard a lot, playing soccer and then running an ice cream store in the tree house. Carl evidently ordered two scoops of cranberry ice cream with a pickle on top! Today Carl is bringing out his massive bin of Legos from his childhood and they are doing a Lego day. I do lots of things with or around them to support their activities or feed them, but I don’t really play much anymore and the thought of doing so feels like it would require a huge amount of energy. I’m glad we have both of us since we make a good team. 

During their morning art time this week the girls started making Eastertines (a la valentines) and also excavated gems from plaster kits. The latter activity was messy but usually went well and spanned a long amount of time. Every week day the girls watch a recording of G reading a book. Having now watched various other people read books online, I am more in awe of G than ever before, which is saying something because we have known he is amazing for 10 years! He has a new hello song every day, he interacts with his audience and with the book, he gives kids time to think and guess about what is coming, he does different voices and sings songs. His energy and presence is engagingly wonderful. Sarah also has a weekly phone SR session with G, for which she happily scampers up to her room. The girls also had another art session Facetime call with Sc, which similarly feels like SR time as much as is possible in this new virtual world. 

Being quarantined hasn’t stopped Amy from going to camp. She packed everything she needed, including books, dolls, clothes, and a sleeping bag. Quarantine also hasn’t stopped the girls from riding the bus! It is a wooden bus that they made with Carl months ago. They used chalk to draw a crosswalk and other road markings on our sidewalk. Early in the week the girls had sleepovers in Sarah’s room. That was adorable and heartwarming. There are many moments of easy play that warm my heart and are amazing to witness, and there are many times when I have to break up physical fights. Yesterday, Amy got extremely mad at people and things. She made a list of the 4 things ruining her life: 1. Sarah 2. Dad 3. covid19 4. my blister [on her hand]. You see I evaded being on the list! 

Much love to all of you.