February 25

For a long time now I’ve had an image in my head of those heartwarming races where one runner is injured and another runner comes along and helps them finish the race. I feel like Amy is a runner that came from behind and is helping Sarah run the race. There are also many of us coaches and cheerleaders and fans who do our part too, but Amy has a special role in Sarah’s life that can be filled by no one but her. She fills this role by being herself. Part of this is playing and asking Sarah to play. She does this not to help Sarah but because she wants to play with Sarah. Meanwhile, Sarah can play with Amy in ways that are currently too challenging with other peers, but I see that finish line and I believe she will make it.

In general we seem to be in one of those times when I feel as if the air is crackling silently with a quickening of Sarah’s development. I also feel like I have truly changed my thinking and responses about some things. 

Last Sunday the girls played sleep over. I could hear them pretending to be a doctor and patient. Then they did wrestling, which Amy didn’t want so then she left in a huff, reminding me of my own childhood when my friends and I would often say “I’m going home!” only to return a few minutes later. I suggested Tower Crash and they scampered off excitedly to play together. Carl and I were marveling at the long,mostly continuous play. On Friday it happened again. While I was cooking dinner the girls ran off to play sleep over. 

Yesterday Sarah and I were snuggling in my bed. Amy came in and Sarah said, “hey Amy” in greeting. I don’t think I’ve ever heard her do that before.

When Sarah came home on Wednesday I asked what her favorite thing was at school. She said playing with K at recess. In her backpack I found a medal that said “good teamwork.”  It took a few times of asking what that was for but then she said it was for going over a tire and through an obstacle course. Another day I had a note from Sarah’s speech therapist at school. She described the session during which Sarah played a game with other kids. I asked her if she played a game with Ms H. She said yes. I asked what it was and she named what her SLP had written to me. I love getting more information from her about her school days! Part of this is on me to find new things to ask her instead of “how was school?” She certainly seems more ready to supply answers than she used to.

A few weeks ago I forgot to write about when Sarah was putting her name on valentines and wrote “Sah” on one of them. Carl playfully called her out on not writing her full name. Somehow it became a joke with the girls laughing and playing for a long time with shortened versions of their names. What I love about this is that for a misspelled word to be funny you have to have a certain command of language and spelling. Certainly she has known her name for a long time, but still. This feels like something.

Sarah seems to have more flexibility lately about what music we listen to in the car. In the past she would ask for her music all the time and even protest my music. Recently we have driven many times without her requesting anything, listening to the radio with no protest.

Weekday mornings our routine involves me turning on hall lights and then Sarah the Light Bandit gets out of bed to turn them off. Sometimes she says “I’m am the Light Bandit! Run, run, run!” and is happy. Many times she says, “No! No! No! I’m too tired! I want to sleep more!” I have stopped trying to reason with her when she is grumpy. Instead I’ve started turning on the lights way more. Especially when it is really time to get going. I just go from room to room turning on lights and she runs around yelling and turning off the lights. Eventually her upset passes and she is quite awake and then usually gets ready pretty easily.

There have been a couple of times when Sarah has been crying and pauses to say “I’m down in the dumps. I feel blah” (a Frog and Toad reference). What is hilarious is that she even cracks up and laughs a bit when she says this, even though she is legitimately upset and crying. As Carl said, her love of sadness extends even to herself.

A huge change for me has been how I think about Sarah’s never-ending request for her original snail pants. The requests are whiney and sometimes come with upset. She is persistent, despite all of our attempts to make replacements, because the replacements don’t really have the right fabric or print. In the past I would just get so annoyed and mad, wanting her to be done with it. As if flicking a light switch, I realized that her requests and upset are her way of moving through her grief that she can’t have her original beloved snail pants. I can be sympathetic and kind towards grief. I can let her process it as long as she needs. I understand how it can pop up suddenly in the midst of other activities. I don’t feel mad anymore. If anything, I am happy to help her get her sad out. I also wonder if it was this shift in me, giving her more space, that has indirectly led to her increased flexibility about music in the car.

Friday’s swim lesson felt very Son-Risey. Sarah’s teacher has always been wonderful but it just felt extra wonderful this time. The belief in Sarah, the asking over and over and over for her to jump in by herself, the patient waiting with encouragement, the huge cheering when she jumped while holding onto a ring that he also held, the creativity. Of course people have these traits on their own without SR training, but it is the SR training that helps me appreciate their value more, knowing that that is the way I want Sarah to be helped and taught. That is effective. That is the love I’ve aimed to surround Sarah with through all of her volunteers. An extra wonderful moment was during one pre-jump when Sarah was poised on the edge. B was inviting and encouraging her, arms outstretched. Sarah’s arms were outstretched. I was standing with baited breath. And the man swimming laps stopped, watching in anticipation, delight, and belief in Sarah too! 

A little about Amy...Amy wore herself out with amazing swimming during her lesson. It was actually a joint lesson again with just the two of them, but because Amy doesn’t need much hands-on help, B just gave her things to do while he worked with Sarah. Amy was a powerful fish until she got out of the water and then she became a very tired, sad cat. She didn’t even want her lollipop on the way home! I was worried she was getting sick. When we got home our sitter E met us and by the time I left a few minutes later Amy had perked up, snuggling next to E to eat her bedtime snack. 

Amy’s reading ability astounds me. She read a book to me and didn’t need any help. She barely sounds out words ever. She just reads. A lot. The book she read was a mass-market Olivia book, but not the kind by Ian Falconer (which are wonderful, amazing, funny works of art). It had a lot of words! 

February 18

When we got to piano lessons on Monday the teacher asked who wanted to go first and both girls yelled “me! me!” while heading for the bench. The teacher did a joint lesson for most of the time. I love that the girls love it so much!

Swim lessons were amazing. Amy now wears goggles, is learning the butterfly, and is practicing diving down to the bottom to pick up rings. Meanwhile, because there are currently no other minnows with Sarah, she gets a private lesson, essentially doubling her amount of time with the instructor. A couple of times she pushed away from the wall and started floating all by herself! I don’t think I will ever stop being amazed.

Last night I awoke to odd thumping sounds coming from the girls’ room. I went to check, adrenaline slightly elevated. Sarah was in the closet. She said it was a tight squeeze. I asked where she was trying to go. She said, “to get a drink of water.” Oh poor thing! I’m glad I went to check. She often gets up to get water or come ask us to tuck her in. My guess is that our day just wore her out so she wasn’t as clear about things when she got up. I know there is some story about my parents finding me scratching at the front door one night, also looking for water.

A couple of nights ago we had a Goldilocks in our bed, which is not uncommon. When Carl picked up Sarah to take her to her bed she asked if he was taking the baby to the pack-n-play. I love that she can have that playful pretending even when she is mostly asleep. 

Ice skating! Carl and I hadn’t been ice skating for at least 12 years because I’m pretty sure it was completely pre-Sarah. The last time we had been to this particular rink was about 18 years ago! Thus, you may infer that the girls had never been ice skating, aside from pretending on slippery sidewalks. At first Amy was frustrated and upset about how she would never learn and it was the hardest thing she had ever tried to do in her whole life. By then end, after many many falls, she was skating with joy and ease, and then falling more. Still. I am amazed at her determination. Sarah held onto us or the trainer wedge longer but was delighted when she started attempting to move by herself and fell on her butt. We were outside. It was snowing. It was magical and beautiful and wonderful. I’m sure my muscles will be speaking to me later! Meanwhile, the girls slept in longer than usual. They got much more of a workout than I did. Much of my time was spent standing still next to them or helping them stand up and hoping I didn’t wipe out in the process.

On a different note, I hate that I am somewhat scared sending my kids off to school. I hate that I am scared about where the next school shooting will occur. Not if. When. Until there are significant changes in this country. I hate feeling frustrated and helpless and jaded and as if I want to puke when I see a picture of the president. I hate feeling like I must acknowledge what is going on in the country in this blog. But it is too important to gloss over as if it isn’t happening. Pecans and walnuts could kill Sarah. We don’t allow those nuts to cross our threshold. Semi-automatic assault weapons could kill my children. They should not be allowed to cross the threshold of being in civilian hands ever. They are for the military. While I wish there were no wars and that military operations could be different, let’s at least take this baby step to protect my kids and your kids and all of the kids. As Glennon Doyle says, “There is no such thing as other people’s children.” So, what now? There are some national days of protest. March 14 at 10am students and teachers can leave their buildings for 17 minutes to protest gun violence and to honor those killed in Florida. April 20 is the National Day of Action Against Gun Violence. Please share this information. If you are a teacher, do a walk-out. If you aren’t a teacher, tell the schools that your children attend. If April 20 ends up meaning keeping kids home from school (I don’t know if it will mean this), plan ahead and clear your calendar so you can be home with your kids. Please make your calls, send your emails, sign your petitions. Thank you.

February 11

While talking to Sarah on the phone, Mom-Mom asked her where she was. Sarah didn’t answer. Mom-Mom suggested several possibilities including downstairs or in the sink or on a bus. Sarah kept saying no to all of the options presented but didn’t offer up the information that she was in the Sarah-Rise room. Mom-Mom said again, “ So where are you?” and Sarah brightly chirped, “Here!”

Our kitchen ceiling is beautiful. There is just a little work remaining to be done but I am able to clean the dust from the cabinets and wash everything. It is good to have a forced reorganization which will hopefully result in less clutter. I also feel incredibly grateful to have found such a good team to do the work. Not only do they do quality work but I just like having them around because they are enjoyable people.

I’ve been appreciating how easily Carl and I agree on things when it comes to making decisions about the house and our furnishings and life. That is not to be sneezed at. I’ve also been appreciating how much Amy and I adore each other. Most of the time it is a clear and easy love and the times that are fraught are few. With Sarah I can appreciate how our love keeps us coming back to each other despite our times of yelling and strife. 

Swim lessons again (as usual) went amazingly well. Amy learned to tread water and Sarah jumped in once all by herself. Sarah spent the whole lesson jumping in and the teacher kept encouraging her to use less of him as her support. He had her jump to his arm and then the next time used a pool noodle in place of his arm so she still had something to hold onto but it was a little less stable and a little more removed from him. 

The girls had gymnastics yesterday and the teacher that I snagged a couple of months ago to be a babysitter led the opening warm up. It was so wonderfully fun and creative that I was just smiling and laughing while watching. If I hadn’t already realized how awesome she was and asked about babysitting, I would have done so after yesterday’s class. From swimming to gymnastics to our large team of sitters to our small SR team to therapists to school teachers and piano teachers, I continue to marvel at how many amazing individuals are in our lives. Seriously. So many amazing people!

Sarah continues to ask “why?” when we tell her various things. When she does then she also seems to be in a good mode for listening to the answer.

I’m reaching for giving Sarah more of my full attention when she is upset. When Amy is upset I have an easier time seeing it as something that will pass and that she needs snuggles. I judge her upset less than I judge Sarah’s. I’m not sure why. Possibly because Sarah is louder and screamier. Possibly because some of Sarah’s topics-of-upset don’t change. I think sometimes I misapply the idea that we choose our emotions and responses, and then I judge Sarah as misbehaving or bad when she is screaming. Then I judge me for not having solved this situation in some Son-Risey way. When I can remember to be gentler with both of us and just give her the time for her feelings (when we have the time) then it is so much better and we have a true, easy, snuggly time at the end. As with other areas of my life, it is best when I remember to be me and not try to be someone else. I am not the Son-Rise founders and I shouldn’t try to be them. I should be me. When I teach, it is best to be myself rather than trying to emulate other teachers, no matter how much I may admire them.

We have been working towards helping Sarah be nicer to Amy when Amy is upset and it seems to be working a tiny bit. Sarah doesn’t get in Amy’s face quite as much and every once in a while will say “Amy are you ok?” without doing any laughing first. 

We have to remind Sarah not to spit in the house or on people. She has developed a new way of spitting where she is sort of launching a puff of air upwards and it has a tiny bit of spit attached. This is ok outside and I understand it probably feels interesting, but…NO SALIVA ON MOM has been a rule for years. We don’t have very many rules that we can recite but that is one of them. No saliva on people in general. I have been needing to remind Amy of this rule too because she likes pretending to be a cat licking me. 

Carl now rows eeeeearly in the morning 4 days a week. In solidarity and so we have a similar bedtime, I now also get up eeeeearly. 4:30am to be exact. Some nights we go to bed as soon as the girls do. Since I teach until 10:30pm on Tuesday nights I do let myself sleep in till 5:55am on Wednesday mornings, but it can’t be any later than that because of Sarah’s bus schedule. 

February 4

Sarah is now officially 11. I always start thinking of her as her new age about a month before her birthday so when we get to the new age it doesn’t feel new. Her actual birthday was also Grandparents' Day at her school and Grandpa was in town to join her! 

At the moment Sarah is in the hospital finishing her 23 hour EEG, which actually takes less time despite its name. This is just another post-seizure test regarding the seizure before Christmas. She and I Ubered to the hospital yesterday because she loves Uber rides. It was a novel experience to come for an overnight stay when it wasn’t an emergency. The process of getting the EEG wires attached was again fraught and awful. She was screaming and crying and scared and fighting it. I was holding her still with the help of a nurse. It felt awful to physically restrain her when she was so upset, even though it was best to just get it done. Then they wrapped her head and her wires in such a way that she couldn’t mess with them and could be mobile in her room. She had a special backpack that she learned to take with her as she moved around the room or to the bathroom.

Carl had the car yesterday because he and Amy did a special ballet thing at Phipps. Amy got to learn a dance from the lead ballerina in Swan Lake. Then she allowed Carl to participate too and they learned a dance together. When they came to join us in Sarah’s hospital room they performed the dance and it was super adorable. Carl then stayed overnight with Sarah while Amy and I came home. I think all of us were in bed by 8pm. When Amy woke up the first thing she requested was that I continue reading Harry Potter! 

When all of us were in the room together yesterday, Sarah tried to do some things she wasn’t allowed to do, like leave the room. While I was just telling her no and getting mad at her, Carl had her pause so he could review the rules with her. After he said she wasn’t allowed to leave, she asked “why?” That is actually a huge deal that she asked that. It shows huge progress overall in her processing and understanding and expressing herself in the present moment. 

There are so many things that can seem depressing/hopeful depending on how one looks at them. It is as if they are separate sides of a curtain that can flip quickly in the breeze of one's perspective. It is so frustrating that Sarah doesn’t listen or heed what we say so much of the time. It is so hopeful that she did listen in that moment and ask why. It is depressing how untypical she is compared to other 11 year olds. It is so amazing how far she has come and that she is learning to swim and she takes gymnastics and she can speak and have conversations and be playful and sparkly and funny and read and write. I can’t stand her stubborn temper. I am so glad she is feisty and determined and brave. I am a terrible mom for yelling and getting tense. I am a wonderful mom for creatively trying different things to help her during the EEG placement. It is not great that we fight a lot. It is amazing how deeply we love each other and it is wonderful how we come back to that love repeatedly even after we yell. It is frustrating how Sarah is a mean older sister so often. It is beautiful how open she is to our coaching her on how to be a kind older sister. My life is harder because of her challenges. My life is so rich and amazing because she is exactly who and how she is. The curtain flickers like a reversible piece of clothing. When I am fed and watered and rested it is easier to focus on the positive side, just as the kids can so quickly switch from being hangry to happy once their basic needs are met.

Amy moved up another level in swimming! She is now a Turtle 2. She can really swim!! With practice she will get more confident and capable, but she can really swim. She swam half the length of the pool by herself and then her teacher let her ride on his back while he swam them both back to where Sarah was. It was so adorable. Amy was scared to swim so far but she did it. Then she was all tuckered out. As with each previous time when she moves up a level, she is feeling scared and uncertain. This change also means she and Sarah won’t be in the same class anymore. They were already bending the rules to let them be together before this, but now their activities are too divergent. They can at least be one after the other. We will get home at bedtime on Friday nights but it is worth it to stay with the same teacher. We love B and he has been amazing with both girls.

 

Over the summer we had a leak in our kitchen ceiling. The plumber fixed the leak right away but we didn’t want to be too hasty with the rest of the repairs so we are dealing with them now. To redo the wiring and lighting situation our whole kitchen ceiling had to come down. Much of our kitchen is spread around the downstairs. All of the things that remained in the cabinets will have to be washed, despite the careful draping that the workers did. I won’t deal with that until after the new ceiling is up and painted. It is amazing to me how incapacitating it has been not to have a fully functional kitchen. It’s not just the food preparation. I have felt like I couldn’t function fully in life. I couldn’t possibly clean some upstairs rooms when my kitchen is compromised! We have gone out to eat way more than usual. I was able to cook for a couple of days and things are currently usable, butI think tomorrow they become unusable again. As I write, some bit of ceiling still in place fell, probably due to my using our washing machine, which is upstairs. I’m excited that I won’t have a garbage bag taped over the hole in the ceiling and I really like the people doing the work, which is no small thing. I am also eager to have everything clean and back in place.