December 31

We had a wonderful trip to Philly and Delaware to visit lots of family. Here are some other highlights of our time…

For part of our time we were in a hotel and the girls loved the pool and the elevators. This was a much larger hotel than we have ever been in, with more opportunities to get lost on the way to one’s room (especially if the signs when exiting the elevator conflicted and one of them was wrong!). This was an excellent way to allow them to practice their growing independence. Carl used post-its to fix the erroneous sign.

During some playtime with Mom-Mom, Sarah said, “I’m doctor Sarah. You must be Mom-Mom.” 

We went for a walk and Amy brought her drawing materials so she could document what she saw, pausing every two minutes to create a new picture.

Mom-Mom served turkey soup for one of our meals. Amy declared she wouldn’t eat it and that she didn’t like turkey soup. She drew a picture of soup with a big x through it. Then she ate the soup and loved it. She crumpled the picture and drew a new picture for Mom-Mom that said she loved soup.

Amy sang a song to Mom-Mom’s big lion stuffed animal. She sang about being friends forever, even when they are teenagers and when they die.

Both girls said “thank you” and “please” easily and often of their own volition.

Sarah told Mom-Mom that she liked the painting in Mom-Mom’s room and that she especially liked the trees in the painting.

Amy started learning multiplication with Mom-Mom.

The girls had many Conversations with Mom-Mom, which means hanging out in Mom-Mom’s room and playing and talking. This time they also expanded to having Conversations with Pop-Pop.

Carl and Mom-Mom played some duets. Amy danced and Sarah sang along as best she could. 

We listened to a ton of Boynton music on our drives and Sarah sang along or attempted to do so with many more songs than usual.

Carl helped Amy do an experiment with the water pipes in our hotel room so she could understand why the temperature might not always match the handle that was turned.

Carl and the girls spent hours assembling a lego robot cat that can be programmed to purr, wiggle whiskers, hiss, and fart.

Amy adopted two new stuffed animal cats. Sarah received three stuffed animal pandas!

Sarah added to her sad creature repertoire after reading The Day the Crayons Quit. She now pretends to be a sad crayon.

We attempted to go to a playground on a very cold day. I told the girls to wear their snow pants and super snow mittens. There were protests. My suggestions were not followed. After one minute at the playground Sarah was crying to go home. I took her to the car to put on snow gear. By the time she was ready, Amy was wanting to go home. I got her snow gear on her. Then both girls were crying to go home. I maintain that my first suggestion was right and that if they had listened to me they might have lasted for a good ten minutes on the playground! 

Granddad made a train table and the girls loved watching it and finding the different people and animals spread throughout. 

Grammy made seek-and-find lists regarding the train table and the tree. Amy loved them and did them all so quickly that Grammy had to make more!

On our last morning, it snowed! The girls bundled appropriately and had a wonderful time playing. Since Grammy and Granddad live on a cul-de-sac, that gave the girls a huge area for play. Amy pretended to be a snow plow, snaking on her belly across the street and on the sidewalks.

We celebrated the birthdays of Granddad and great-uncle B. Sarah expanded her well-wishes to her other uncle B. whose birthday was in November. It was noted by the uncles that Sarah was much more talkative and connected than they had previously witnessed. Sometimes big jumps in Sarah’s abilities are more easily observed by those who don’t see her often.

Sarah has been pining for a pair of overalls that Grandma made for her when she was much younger. Grandma is going to make a new pair but the fabric will be different because the original is no longer available. We took the girls to a fabric store and Sarah picked red fabric with white dots and Snoopy. We got extra fabric so while I mailed some to Grandma, Granddad and Carl used the rest to make Sarah a very basic pair of pants. She loves them and this buys us time while Grandma makes the overalls. 

I got a baby monitor so we can keep an ear on Sarah when she is in bed and we are still awake. 

There were still many times when I flew out of bed with my heart racing if Sarah made the slightest sound in her sleep. Carl and I talked for a long time about parenting and fears. It helps that he is not panicked in the same way. I realized that I have been terrified that a seizure would equal death but that isn’t likely to be the case. I still don’t want it to happen again and the thought that it might still scares me, but I am more at ease. We talked through the different moments when each of us has been scared for Sarah’s life. They are different moments. That was interesting to realize. While we did stay up quite late with this conversation, it has helped me get much better sleep overall.

Naps. Naps for all.

I hope you all had a wonderful week.

December 24

“I love my mom so much!” Sarah told her sitter Tuesday night before bed. This is not a usual utterance to come from her. A few hours later she had a seizure, the first since she was 8 weeks old. That made her statement all the more poignant. Later, as she recovered from the seizure and sat up suddenly to tell us “I’m back,” it felt like the most perfect moment in true Sarah style. 

I never thought I would pray so hard so often through Sarah’s life from birth through now. There have been at least four times of being deeply scared and praying hard. And that isn’t even counting when she had pneumonia or a concussion!

When you get home from the hospital after having a seizure, you and your sister may be allowed to have a hot dog dinner in mom and dad’s bed while watching a show on an iPad. 

I decided to keep Sarah home on Thursday so she could rest and I do think that was important. I just didn’t realize how much I needed to be with her for my own recovery. My cells needed to be reassured of her presence and well-being. We slept and rested all day. 

Now, for some more normal moments from the week....At one point Sarah was upset about something, and Amy wanted to help so she set up the Cat in the Hat I Can Do That game that Sarah loves. I was busy and so they decided not to wait for me to play! They were playing together all on their own! They have played games many times before but a grown-up has been there to help. 

When Sarah came home from school Tuesday afternoon, Olivia (our cat) was by the door. Sarah said hello to her and started petting her and said Olivia was glad she was home. 

How Amy sees herself in her imagination, a self portrait: a black cat with a pink nose and long eye lashes and a pink smile.

Amy can tie her shoes!!

I know now that Sarah doesn’t like clothes that get staticky. I don’t remember her articulating this in the past but twice this week she has talked about it! 

We celebrated Christmas early because of our travel plans and we set a new record for early. Last year it was 4:45. This year the girls came in to our room at 4:15am! We made them wait until 5 before we actually got out of bed. I am so grateful that Christmas could be normal. The possibility that it wouldn’t be flashed before my eyes after the seizure, and as I write this I realize how little guarantee there is going forward. Part of me could be scared all the time and yet that is no way to live. Little by little the fear subsides. The fact that Sarah and I get grumpy at each other again seems like a very good sign of things returning to normal!

Normal. Hmm. Or not quite yet. I wrote the above words last night right before Sarah puked voluminously in her sleep. Amazingly enough I heard the beginning warning in time to say “Sarah!” which alerted Carl. As I fumbled for a light switch Carl rushed to her side. I lobbed a clump of washcloths towards her head and it landed just in time for Carl to prevent a more involved clean-up operation. As it was we went through all of the towels because this puking happened twice. What I hadn’t anticipated was how high my adrenaline would spike and how terrified I was to fall asleep afterwards. Our hotel room has a separate room for the bedroom and the girls are in the living room pull-out couch. I wanted to sleep on the floor next to Sarah or to move Amy into my spot so I could take hers. Carl pointed out that then I would wake at every slight movement from Sarah. So I stayed in my bed and eventually sleep won against my fear and vigilance. Reasoning that even if she pukes or has a seizure she won’t die doesn’t seem to help my fear. So I’m not back to normal. I don’t know if or when I will be. What is normal anyway? This may be my new normal for a while. 

Lots of love to all of you. Your love and support are incredibly meaningful.

December 17

I so appreciate your validation and support of me as a parent and your assurances that I’m a good one. It helps. And most of the time I may even agree that I’m a good parent. But. (My mom can attest that I am extremely skilled in “yes, but…”) There are the times that no one or a very few people witness when I scream and yell so loudly and longly at Sarah that it horrifies me. Almost none of you see that. I seem so nice so much of the time especially to grown ups. But I am truly horrified by myself sometimes. Friday night I was suggesting that Sarah put lotion on her legs because she seemed itchy and swimming may have made her skin even more dry. Before I finished speaking she was whining and slightly yelling in protest. I was calm. I was calm. I was calm. And then I really wasn’t. I hate not being allowed to speak. I hate feeling powerless. It was as if I was watching Mom-Hyde and couldn’t stop the anger even as I realized how absurd it was to be screaming at her to stop screaming. It was as if all the frustration and pain and rage of all my parenting moments for nearly 11 years were compounded and coming barreling out of me in that moment. And then I felt embarrassed and awful. The worst is knowing that it will most likely happen again. And then the extra worse is how un-Son-Risey this is. I am supposed to be able to think my way through this and change, truly change so that I don’t do that anymore. Right now I feel like anything I try to change ends up rebounding worse than before. I feel like a hypocrite for how calm and nurturing I can be with my work, how centered and present with my clients and students, and then how completely uncentered I can be as a parent. I know. I know. I have many many many wonderful and calm parenting moments. And the screaming moments probably only last 2 minutes. But the repercussions in me last so much longer and overshadow the rest. I feel like I need to go into the woods and scream and yell for hours, though my throat certainly couldn’t handle it because it is rough and scratchy after 2 minutes. I feel like I ought to be able to apply all of my principles from work to my parenting but that is so much harder. If my students started whining and yelling in protest about my ideas I would probably be a lot less nice to them too. So I guess the real confession of this paragraph is that I am even more deeply human and imperfect than you may imagine. In two minute increments. Maybe you all have your moments too that almost no one sees. That is the  thing. No one talks about these moments so we end up thinking we are the only ones. That is partly why I share so that maybe all of us two-minute catastrophes can come together.

After writing the above I did think more about why I yell and what I might be able to change. I practiced imagining Sarah whining or yelling and practiced letting go of my tension. The next day I was able to let go of some of my tension in the moment for several different moments. And then I wasn’t. But I do feel hopeful that maybe if I practice more when I’m by myself I will get more skilled. I often suggest that my students practice extending their arm and thumb when they aren’t giving a massage to make sure they can do that part comfortably because if they can’t do it comfortably when they aren’t giving a massage then how can they do it when they are?

When I was younger I used to play group solitaire with my best friends and their family, each of us having our own deck but using communal piles in the middle. This was a fast-paced game that would have piles completed before I even knew what had happened. I would often have moments where I waved my hands and just wanted everything to stop. I feel this way about parenting sometimes. If I could only wave my hands and say “stop” and have the game pause so that I could slowly understand what is going on and play my cards, but the pace outpaces me and thus the yelling before I seem to know what has happened. So I will practice slowly, getting ever more familiar with my own deck.

Swim lessons went extremely well. This time, at the teacher’s suggestion, Amy jumped in the pool, turned over, and floated all while the teacher was still out of the pool. I could see the fear in Amy's eyes but she did it! She was so brave and she did it. She really is capable of saving her own life if she were to fall into water. Sarah’s body was calmer than in the past for her floating practice, though she still doesn’t want the teacher to let go. I also noticed how I could smile and enjoy Sarah’s spunky cheeky rebelliousness when she was not following what the teacher said. It is so much easier when it isn’t my instructions that she ignores!

Thursday the girls both had two hour delays for school due to snow. I don’t remember this ever happening last year. Usually one of them had a delay or closure but the other didn’t and if Sarah’s Catholic school was on time then Amy and I would drive her because her bus is a public school bus and I didn’t want her to be two hours late. This time I had a delay too so it was all easy and relaxed and fun. We all got bundled and enjoyed the snow. 

I feel that there is some profound lesson in my words “this time I had a delay too and it was all easy.”  Hmm. To be pondered and expanded in my life as a whole when possible.

My quandary as we look ahead is how to deal with Christmas eve. Amy wants to sleep under the tree in the hopes that she will wake to see Santa. Umm. Does she still have her superhuman sleeping ability from years past when we could have the lights on and Sarah could be screaming and Amy would sleep through it all?? If so then we don’t have a problem. But if she wakes up?? She does know that some presents come from us so I suppose we could always just say Santa hadn’t come yet or had already come and gone or that we were up because we thought we heard Santa too. 

December 10

I’ve been struggling a bit lately with my parenting. I’ve had these times before and they are no fun. I hate feeling like everyone would be better off if I just hired a sitter to take my place. I feel like every time I say something it is either ignored or the opposite is willfully done. I am not handling it well.  I know this is what kids do but sometimes I’m able to handle it relatively easily or with grumps but quick recovery. This week I feel like I’m just mad at the girls every other minute and feeling like a bad parent and wanting to throw half of our belongings in a dumpster. And then I also have moments of feeling that all is well, all is right with the world, I’m so blessed, etc. Those moments are usually when I am by myself or working. These struggly feelings seem like the underside of a rock that I’d rather stayed against the ground but somehow my rock got flipped upside down.

There have still been wonderful moments mixed in with the frustrations. Sarah participated in her first Christmas concert. I could barely see her due to where she was and how the seating was arranged. But…. when I did see her…. she was singing! Up there with so many other students! Singing happily and dancing a bit! When we saw that she was singing Carl and I turned to each other with surprised wonder and perhaps some tears sitting in our eyes. Of course we hear her singing around the house and with Amy, but it is a totally different and bigger deal to sing up in front of a huge group of people, with a group of people, joyfully. And she waited patiently for a loooooong time while her class was not singing but was staying in front of the stage. Not that I could really see this, but I think we would have noticed her teacher intervening or we would have heard her if she wasn’t waiting patiently. Another wonderful thing was that the timing worked for Grandma and Grandpa to be there. After the concert when I brought Sarah up, her face was lit up with happiness as she gave her grandparents and Carl huge hugs. The girls were happy to eat gingerbread cookies on the drive home and change into new pajamas before a very late bedtime.

The next day Amy had her concert. It also was wonderful and I could see her the whole time she was on stage. For Sarah to be quiet during the concert also meant letting her play with her phone the whole time, as usual. She really just wants to go up and down the aisles or stairs. It was a striking contrast to her patient attendance during her own concert. Maybe I need to hire her teacher to come be me at home. Leaving was a little difficult, as usual, because Sarah didn’t want to leave the stairs she was enjoying. I roughly explained that girls who left easily got to eat gingerbread cookies on the way home and girls who didn’t leave easily didn’t. I felt mean and graceless as a parent, embarrassed to be observed by other parents, but desperate to be on our way home. 

Yesterday I had a really amazing Alexander class, taught by my AT teacher. I learned, again, to be slower and wait longer for the outcome I desire. As I read what I wrote about my parenting I’m thinking that a lot of my strife comes from wanting something to happen right NOW! Sometimes it needs to, but what if the other times I could just allow even one more minute for things to shift? Perhaps so much easier said than done, but at least I have an intention and hopefully that will make a difference. 

This is the first week in ages that I’ve gotten a good night of sleep every night. I still get headaches but they are extremely mild thanks to Verapamil. I’m still on my quest to find what I might do that contributes to my headaches so I’m being vigilant about noticing when I tighten my jaw or tongue, which I do ALL the time. Letting that tension go seems to help the whispers of headaches abate. I doubt that is the whole deal, but at least it is something I can undo. 

In contrast to my struggles, last Sunday Carl took the girls to Ikea and was startled by how easy it was compared to when they were younger. We now have a desk (courtesy of Grandma and Grandpa) in the SR room and a pink chair courtesy of Ikea. As G. so perfectly put it, the SR room is growing up. We have art on the walls, a bookcase full of books, and bins full of dress-ups. We no longer need to keep things out of reach or keep the room so simple. As soon as the desk was in place with the chair, Sarah picked a book and sat there reading. 

Over the past few weeks we have been playing “I Can Do That” which is a Cat-in-the-Hat game involving picking three cards that are to be read together and then you do the task described on the cards. Sarah reads her cards and does the tasks with little assistance required. She even came upstairs recently to find me and ask me to play the game with her. This is really amazing and not to be sneezed at. Sarah’s favorite thing is to get a “stop” card and moan about it, just as I make a huge deal when I get a “stop” card.

Sarah notices when the humidifier is empty and fills it. Sunday mornings she sometimes goes outside to get the newspaper for Carl without him even asking for assistance. In so many little ways Sarah is getting more capable, responsible, and grown up. 

I have noticed increased ease, speed, and flexibility with language when Sarah is connected to us. When she is stuck on wanting a certain thing and her whining to get it and can’t remember what I said a second ago, then that is frustrating and I want to just push my head into a wall. When Carl pretends to be a T-rex going after her bagel and she quickly says she is scared of the T-Rex then I’m impressed with her facility. 

Much love to you all.

December 3

This week has had some profoundly wonderful moments and some extraordinarily horrible moments. The headaches have been the horrible ones. Thursday night was one of the worst nights of my life. It was not only the intense pain. It was that after 1 1/2 hours of intense pain I felt adrift in panic and despair, feeling that the pain would never cease. I was downstairs and crying hysterically at 3 am when Carl came to find me and helped me at least stop the panic and hyperventilating. Eventually at 5am I was able to sleep for a short bit, but then at 6 am it was time to start the day. Carl helped get Sarah ready so I was able to rest a bit more. I am remembering 2 years ago when I similarly thought I could handle the cluster and hoped that if I didn’t take meds then maybe it would only last 6 weeks instead of going on longer. I was wrong. The problem is, if I don’t start the Verapamil when the beast is small then it becomes too big to stuff back in a cage without something extra beyond Verapamil. 2 years ago I got shots in the back of my head. At the time I dreaded it. This time, if it comes to that, I will go willingly. Or I can do a steroid. Or maybe the Gammacore new thingie will actually work if I can get it. Things are moving slowly and frustratingly to get it. Insurance won’t cover it because it is too experimental. I can pay for it myself but once it is activated it will only work for a month whether or not I use it. And it is $500 for that month. Argh. Still. At this point I am getting desperate. I have read that many women say clusters are worse than childbirth. I always thought they were similar because childbirth was really freaking painful. But with labor I knew I was getting something good at the end. With labor there were breaks in between contractions. (And then the wonderful blessed epidural.) With labor I knew it would end and then I would be done, rather than needing to go through it night after night for unknown lengths of time. So, yes, I second that feeling that clusters are worse than childbirth. I have known of people going to the emergency room for headaches. Thursday night was the first time I contemplated such a thing. So, yeah, it was really really bad. 

What is odd and mostly good about cluster headaches is that they happen at night. So if I wasn’t telling you about them you would usually have no idea that I was dealing with them (unless you are my friend who has seen me dropping off Amy while still in a fog of pain). Once they clear then I go on and do my normal day. I may be tired but I can still do my life. And that life has had some really amazing things.

When I get a good night of sleep with no headache then I feel amazing. One morning as I was attempting to get Sarah ready for school and we were about to go into some of our normal patterns of resistance, I realized that I needed to change my frequency for my message to go through. It was as if I had been dialing the wrong phone number and that was why I was getting a busy signal in Sarah’s field of attention. I changed to asking Baby Panda to take a bite of her bamboo bagel so she could be ready for the Panda van. My call went through instantly! I had the right number. She looked at me, connected, and did as I asked. 

Sarah and Amy played many rounds of Connect Four in a row with hardly any assistance or intervention needed. AMAZING!!!!!

Sarah has been singing a lot more in general lately, especially singing along with some of her favorite songs. She seems to have a new love of Adele, especially “Someone Like You." She and Amy also sing “glooooooooooooooooria” from “Angels we have heard on High” loudly and longly.

Amy moved up a level in swimming! She is now a Turtle One.

I had some really wonderful teaching and massage moments. Thanks to experiencing Carl’s calm holding of my person during my headaches I have learned a new level of being for my Alexander teaching. I am comfortable waiting so much longer in any given area, really waiting until I feel the change I am seeking. With Carl and with J. I have experienced such kind, comforting holding of my being that I feel that intention coming more strongly than before through my hands as I give a massage or teach Alexander. I am more in my person, more in my presence, more in my kindness and compassion. I am trusting what I perceive more than ever. It is noteworthy that this new level of connection is perhaps due to my headaches. What has also been amazing is noticing how much more fully I can accept and take in comfort and letting go into being held than I could before. I thought that I was already there and then I invited myself to let go even more and I did. There are probably endless levels of this letting go, accepting love, connecting more fully to another, and offering love and presence. I love my work so much and I am so deeply blessed by incredible support from all around, whether in person or on the phone or via email. So much love and support. I could perhaps let go even more into feeling it.

May you never know a cluster headache. May you experience deep love, support, and ease in your whole being.

November 26

I marvel at where we are sometimes. I marvel as I watch Sarah listen to her piano teacher, watching what K. does, and doing her best to do the same. I marvel as I watch Sarah play with Amy, engaging ever more in what might be labelled normal play. I marvel, not because these moments are new, but because there was a time when we didn’t know if they would come. It is good to keep the amazement fresh and crisp.

I marvel at how awful my truly awful headaches are and how I can somehow forget. I forget because as they ramp up in the cluster then I experience really bad ones and I somehow think they are the worst and that I am managing. Oh no. Not by a long shot. I wrote a short poem to help myself remember. Please hold me accountable if you ever witness me thinking I can handle a cluster on my own again. I can’t. It is also no good for my family. Give me my own words back. 

I forget

I always forget

just how bad

how impossibly

unimaginably intensely horrific

pulsing through my sleep

waking me with a warning

or a full blown attack

a knife through the eye

lightning through my brain

my legs run miles in unstoppable movement

trying to outrun the pain

I cannot do this

but what choice at this moment?

never

never

never again 

will I try to endure

will I think I can

forever more I must remember 

no more waiting

There can be no waiting to start the Verapamil. I cannot thank Carl enough for being with me in the middle of the night so many times, multiple times in each night, holding me with calm hands that somehow sometimes miraculously put the beast back in the cage after half an hour, as if it had never been. He becomes my Alexander teacher, helping me find my alignment when my pain takes me into the worst crumple. Thankfully, now I can marvel at the efficacy of Verapamil. I have built up to my medium dose and already there is improvement. Two nights ago was bad, but not at all the worst. Last night was headache-free. 

Our Thanksgiving break has been lovely. We are catching up on sleep. We are sorting through toys and books, making a huge pile of things to donate. Not that you will necessarily be able to tell. We still have too much crap.It is a marvel! Amy can make decisions and agree to donate things. Sarah would choose to keep everything because she loves having everything she can ever remember. Unless she is playing with an electric train set and then she is distracted and agrees to donate everything. I try to be careful in my decisions so that nothing Sarah truly deeply loves would go. Anyway, it is wonderful to have a staycation and be able to do house things that have been waiting for years.

We also went to an ice cream parlor with Sarah! There is one in Lawrenceville called NatuRoll. They have non-dairy options and if you have allergies then they take extra special care. Sarah’s ice cream station was completely cleaned before they made hers. 

I hope you had marvelous Thanksgivings.

November 19

Sarah brought down the house. At her piano lesson on Monday the song they were practicing involved saying different names after saying who you were talking about, such as “say my mother’s name… Jenny.” Amy had her turn first and when she had the line about her father’s name she, of course, said, “Carl.” When it was Sarah’s turn for the same line about her father she instead said, “Daddy Panda!” The teacher, Mom-Mom, Amy, and I just collapsed into laughter. It was so perfect and so unexpected.

Instead of making it to swimming on Friday afternoon, the girls and I spent over 2 hours in the car trying in vain to get to their lesson and then trying to get home. Evidently there was a large (10 cars and a truck) accident at our usual exit. We got off at the next exit but after waiting in long line of traffic and thinking we could get through to where we wanted to be, we were given no choice but to get back on the highway and crawl 2 miles, taking 45 minutes. We had already missed the first and second swim time options by the time we exited the second time so were just trying to get home. I was tired of being trapped on a highway and thought we could go through the business district to get to some alternative routes, but that attempt was blocked as well. We drove back the length of the business district to get on the highway again and got home easily in 15 minutes. We were sad to miss swimming but I am grateful that our timing was such that we were not in the accident.

Yesterday morning Sarah transgressed against house rules by going outside in pajamas. Amy wrote her a ticket for her bad behavior. The ticket shows a picture of a sad panda holding a ticket and it says, “going owtside in pjs with no cote on a rane morning.” (going outside in pjs with no coat on a rainy morning)

There are many times that I am caught in feeling grumbly or tight about the kids and their behavior when Carl is able to somehow sidestep and creatively meet them in a way that honors where they are and encourages them to get wherever or however we want them to be. In these moments I have known I was about a minute away from screaming. Yesterday I was feeling overloaded by the mess in some rooms of the house, by the number of things we still wanted to do in the day, by being hungry and needing to get dinner, and by having a hungry cat walk directly under my feel when I was trying to get to the kitchen to feed her. Carl took charge of getting the girls to help clean the front room while I worked on dinner. I could hear him asking Amy to help and she was getting distracted with wanting to do other things. He explained to her how that was feeling for him. She got upset because cleaning didn’t feel like fun. He suggested they could make it fun by pretending to be cats putting things away. The day was won! After the cleaning I heard riotous laughter as Carl pretended that Sarah was a guitar, strumming her belly, and that Amy was a trombone, using her legs as the trombone parts. And that was after giving them each lessons in tying shoes! I am so repeatedly impressed with Carl’s parenting, my heart feeling so full it is overflowing with marvel and appreciation. 

I have been having some tremendously bad headaches. Wednesday night/Thursday morning was the worst yet for this cluster. It was so bad that as I put Sarah on the bus and walked Amy to school, people asked if I was ok. I was barely functioning (Carl was out of town, otherwise he would have gotten the kids where they needed to go). After I got Amy to school I went for a brisk walk, and as I walked I went through my Alexander directions nonstop for 20 minutes. By the time I got to my destination I was feeling better. I still had the residue of a headache all day, but it was so much better. When Sarah came home the first thing she asked was if I was feeling better! She may have thought to ask because her driver had also asked me, but still, I thought it showed amazing awareness and thoughtfulness.

I have had more awful headaches since then. While I was wanting to hold out for the Gammacore, last night I realized that didn’t make sense. I started my verapamil. When the gammacore comes, if I get a whisper of a headache, I can try it and maybe determine in that way if it works for me. Or maybe it will come soon enough that I’ll still be getting headaches. Hopefully not full-blown ones. I feel simultaneously like I failed in my goal of holding out for the gammacore, and also completely stupid for having waited to start the verapamil, putting myself through such agony. I have been dreading going to sleep at night. It’s no good. I feel like waving a little flag of surrender and saying, “fine, I’ll be on verapamil for the rest of my life.” Last night was a good night. No headaches. I had a whisper this morning but that was all. Sometimes I get a reprieve like that even when I’m not on any meds, so I don’t know what my coming nights will be like. It takes time for the verapamil to build up in my system enough to be fully effective. It takes time to titrate up to the full dose. Despite being disappointed to need to be on anything, I am so glad that there is an option for me that works. Now on a different note...

What does a cat use to mow the lawn? ................................a lawn meower! 

Amy told us that joke yesterday and we cracked up. I believe the original credit goes to G. 

November 12

The second piano lesson for the girls went beautifully. Each girl had about twenty minutes individually and then they shared an activity at the end. I seriously cannot imagine a more perfect teacher for beginning piano students. The girls practiced what they had done once but haven’t wanted to since then and I am hesitant to push anything.

Swim lessons went well too. This was the first week of both girls being minnows, although I think Amy will move to the next level soon. She was doing all sorts of new things or the usual things but more independently and confidently. Sarah floated independently for about ten seconds but the rest of the time she wanted to hold on to the teacher while floating. Hilariously, when he told her to dip her head in the water including her eyes, she angled her head so as to only dip one eye.

I can’t think of much else for the girls. Mom-Mom and Pop-Pop are visiting and there have been some lovely and sweet times with them, but Sarah has also just been having a rough couple of days with lots of screaming and whining. I don’t know if this is because she is getting sick again or something else. Part of me wonders if she is being my canary and just expressing my struggles because I’m certainly not in top form this week due to headaches.

Every time I think I have something figured out about my headaches I am proven wrong. I know nothing. Or I know a lot but it is a moving target and what works one night might not work the next. I have had at least three nights with a terrible headache in the middle of the night that lasts an hour or two and then finally I can sleep more, and then I wake with another one. Then I have a headache hangover for some of the day. Then I feel scared to go to bed at night because it feels like ushering in my doom. What might seem ridiculous is that I have a bottle of Verapamil here. I could start it any night. It would take a few days to get into my system enough to make a difference but then it would and the headaches would go away. Then I would feel frustrated that I don’t actually seem to be capable of going without meds. Not that I think I am supposed to withstand the pain, but I had really hoped that I had figured out a way to not have the pain at all. This is twice within the past year that I have gotten off of the meds and then the headaches came back within a month or two, usually following being sick. When I first got the clusters in college they lasted about 4-6 weeks and then would be done. That was the way of it for many years so I could sort of handle the horribleness because 1) for a while I didn’t know there was an alternative and 2) I knew it would end. For the past handful of years the clusters haven’t ended and any given headache can last much longer than they used to, which is why now I am said to be chronic and with migraine tendencies (the duration). I am waiting for the paperwork from my doctor to try a new thing called Gamma Core. It is an external, hand-held device that can be used to stimulate the vagus nerve and thus interrupt the headache. It is specifically to help people with clusters. I know it might not be my final solution but I am stubbornly waiting to get it and see if it helps before deciding whether or not to go back on the Verapamil. Sometimes Aleve helps a bit. Sometimes it does nothing. Sometimes Advil helps. Sometimes it doesn’t. Advil isn’t supposed to be a good idea because there can be a rebound headache, but that didn’t happen yesterday when I tried it. Sometimes I can marshal all of my reserves and have good Alexander use and do constructive rest and do trigger point work and drink a ton of water and think positively and stay hopeful. Other times I just give up and I have nothing. All I can do is just exist and wait and whimper and keep moving and rubbing my head and neck until somehow the pain subsides. I haven’t yet looked with longing at the bathroom sink, wanting to bash my head into it because somehow it promises relief, so that is something. Still. This sucks. On the plus side, Sarah’s chin presses feel great on my head, especially during a headache. Also, if I didn’t have my clusters then I wouldn’t have found J to help and I wouldn’t have gotten as immersed in and passionate about neuromuscular therapy, thus involving me more at the massage school. So those are two very positive things to come from the headaches. However, dear Universe, if it is all the same to you, now that I have received my blessings it would be ok to remove the headaches.

I hope you are pain-free or that there are blessings in whatever pain you are experiencing.

November 5

The girls had their first piano lesson on Monday. It went well and I also think it is good to have them sharing the lesson time. Amy gets anxious about doing things right the first time (I have no idea where she gets that) and Sarah doesn’t seem to mind at all if she doesn’t get something right away. Amy was in tears early because she couldn’t copy a clapping pattern. So Sarah took a turn while Amy snuggled with me. Then they took short turns with everything after that. Such a lesson format isn’t usual but I think it may be the perfect way for my girls to start. I am also glad that Carl is excited to help them with their practicing once we get to that point. My piano anxiety from years past was instantly back in action just about helping the girls practice so if I can get a pass I will take it!

Halloween was cold but the girls still managed several houses for trick or treating. They both decided to call it a night at the same time. Well, actually, Sarah wanted to be done immediately, but we encouraged her to do more so she wouldn’t want to go out a second time after everything was over. How can people be so small and so grown up at the same time?! Sarah was as flexible as usual about my swapping her collection for things she can actually eat. This year I even had small store-bought chocolate bars that she could have. Enjoy Life makes the chocolate chips we use and this year they made Halloween chocolate bars.

Jack-o-lanters happened the Thursday after Thanksgiving and it was definitely easier with Grandpa’s help. Amy carved a cat face and Sarah made circular eyes and a mouth.

Bunk beds! Grandma and Grandpa brought bunk beds and the girls are super excited. The miracle of all miracles was that when asked which bed they wanted each girl said a different answer so there was no fighting. Amy wanted the top and Sarah wanted the bottom. We also now have a second dresser. How did we live so long without two dressers?! No wonder the drawers of the previously shared dresser used to be so ridiculously packed. 

Swimming didn’t happen Friday because that was the day all of us went to the doctor. I had been starting to think I should get us all checked for our coughs that wouldn’t go away even though we were otherwise fine or just a bit run down. Since Sarah didn’t have school it seemed like a good thing to do with our time. It turns out that she had walking pneumonia. We got her meds and headed home. Fortunately, Grandpa was visiting and didn’t have plans. I left Sarah with him and called Amy’s school to say I would be there in five minutes to get her. She was in tears because she hadn’t expected an early dismissal. I was pretty sure her diagnosis would match Sarah’s and I wanted to get her on the mend just as fast. We saw the same doctor, received the same diagnosis, got meds, and then I left her with Grandpa while I went to work. After work I went to the doctor and was diagnosed with bronchitis and given antibiotics. Carl went to the doctor after work and was also given antibiotics, presumably for walking pneumonia. Sigh. Here is the lesson: If you have a persistent cough but are otherwise ok, it might be walking pneumonia! I am reminding myself that this just means we all had something now. It doesn’t mean we are doomed for the season. The fact that we all were functioning so well is perhaps a testament to strong immune systems. 

Frustratingly, my cluster headaches have started again. Mildly but unmistakably. What I don’t know is if my two months with no headaches and no meds was just a fluke of luck or if it was due to my trigger point work. I did stop working on myself so regularly when I wasn’t getting any whispers. I have started working again in earnest (which means maybe 2 minutes of work several times a day) but I’m still waking with headaches. Doing trigger point work in the midst of a headache isn’t the best because everything is so sensitized. I just have to calm my whole system and do gentle massage on my head and neck and tell my feet and legs to relax. When I don’t actively have a headache or only have a whisper is when I can do the trigger point work. I haven’t started meds again yet. Weeks ago I had a real headache and thought I was starting a cluster but then I didn’t. I am hopeful that somehow I can get this cluster to calm down and go away. It is hard not to panic a bit, especially at 3am, but I am also stubborn in my hope of curing myself and not needing meds all the time. 

I hope you are all well and have all the dresser space that you need.

October 29

Sarah did a lot of floating by herself in her swim lesson! She is now officially a Minnow! Amy has been a minnow for a while but they were letting her stay in Sarah’s Starfish class time because that was so much easier for us. Now we have to move to a different time slot so my fingers are crossed that we can make it work to leave immediately when Amy gets home from school on Fridays. If that doesn’t work then we will have to find another day.  There are lots of options if I’m willing to change our location and teacher but I’m going to do all I can to stay with the same teacher.

I went to Philly on Thursday to hear one of my favorite authors speak. Glennon Doyle, formerly Glennon Doyle Melton, has written Carry On, Warrior and Love Warrior, and both books are beautiful and raw and honest and amazing works of heart. There were other women also speaking. Most of it was super wonderful and beautiful and inspiring. And then there was a tiny bit that was generalized, meant-to-be-inspirational, you-should-speak-up, you-can-change-the-world stuff that actually didn’t work so well for me. Sometimes that just has me feeling like a bad person for not doing more, more, more or being a different person, even though their whole point was to be our true and beautiful selves. I love my life. As it is. I have already been following my truest and most beautiful path as well as I can. I feel like I do good work in the world in my small way and I hope it has ripples. I am so happy and so blessed so much of the time. I don’t feel like I need to push myself in some new way. Not that they were necessarily saying I should, and even if they were, what then? I am the one interpreting all of their words for me, so maybe this just shows me where I still pressure and judge myself. Anyway, the most inspiring and beautiful parts of the presentation were when the women told their specific stories. Thus, onward with my specific stories.

It was lovely to have another short trip on my own. I got to see all four of my parents, my brother, and a family friend. I also got to sleep in. When I woke Friday morning and saw 9:30 on the clock I thought something must be wrong. I never sleep in that late! My mom went with me to the show and we went to French Creek the next day. French Creek is a beautiful state park. I used to camp there when I was little, and I will always be on the lookout for a small Annie doll that I lost there. The most peculiar thing this time was how much smaller some of the park features were. The dam wall was really much smaller than it used to be! The other strange thing was that we saw three dead moles, each in a different location. Not eaten but definitely dead. Any thoughts as to what would make this happen? Anyway, I was originally to return today but when the airline contacted me to offer a free change in plans due to the inclement weather expected in Philly today, I took their offer and came home yesterday. This worked perfectly so I could attend some Halloween parties. 

The funny thing with one of the parties that I so much wanted to attend is that I really just spent the whole time shadowing Sarah. I didn't interact much with that many other people. And yet, it still means a lot to be able to go and to facilitate Sarah being there. I probably could be less attentive, but I want to make sure she doesn’t double dip her pita in the hummus, for example. I want to be sure she doesn’t accidentally have something with dairy. And perhaps old habits die hard. She didn’t interact with the other kids much, which is not new, but she did have a good time. Amy joined the other kids for activities and also had a good time. So a good time was had by all. I let them stay past their bedtime and when I said it was time to go they only resisted for about 10 seconds. Then they very easily went home and got into bed. Costumed for the party, Amy went as a witch, Sarah as a business woman, and I was UnBeelievably Fabulous, wearing what we call “the bee suit,” which is a full-body yellow and black extravaganza that I found at a thrift store while in college. Carl was unfortunately home sick in bed.

Earlier in the week Amy wrote me the most adorable note. It said, “I am sree for being a  grup,” meaning “I am sorry for being a grump.” When I showed it to Carl he asked if Amy had been a grump earlier in the day. I said, “Well, as you know, the ladies of this house tend to have grumpy moments every day…” That is true. I’m glad we also express our love abundantly. Carl and the girls surprised me at the airport yesterday when I landed, and Amy climbed all over me. Sarah was grumpy about having to stop riding the escalator at the airport so first she had to get her grump out and then later she gave me hugs about being home. Olivia was also excited to have me home because she slept next to me in bed, which she usually doesn’t do.

Love to you all.

October 22

While talking to my mom I realized that there are many areas of life that used to be challenging that are now easy. School mornings, getting out of the house to get Amy from school, and bedtime. I don’t even remember when some of these things were hard except that I know a year ago they were.

We all have colds in varying degrees of intensity. I find it hard to stay present with the reality that none of us are terribly sick and that we will all get better. Last year had so much ongoing sickness that I feel like I’m entering a tunnel now and will only emerge in May. I hope this year is easier.

Assuming everyone is well enough to go to school tomorrow, I will have Sarah’s IEP meeting in the morning. Counting objects with a one to one correspondence, addition, interacting with peers, and attending for more than 10 minutes in a neurotypical class are her most challenging areas. What is exciting is that she tests at a first grade level for reading. Seriously. That just knocks my socks off. I know that she can read well and has been able to for a while, but to have it measurable at a grade level just below her actual grade seems stunningly awesome. I also feel incredibly blessed that I love Sarah’s school team and I know they love her. I don’t feel like I need to fight for anything or push for anything. I expect tomorrow will be an easy discussion of how awesome Sarah is and brainstorming any extra ways to help her.

Swim lessons have finally started again after a long hiatus due to pool repairs. Both girls jumped in right where they left off, and this coming Friday Sarah will be moved up a level!!!!!!

Sarah’s latest favorite game is for us to be sad pandas. Apparently when a mama panda is sad she says, “panda, panda, panda.” That is what Sarah informed me when I said I didn’t know what sound a panda makes.

Sarah has been helping Carl put a new floor in the treehouse. I love how much she likes doing projects with Carl and how much he teaches her to use tools. Amy also likes to participate but not as much as Sarah.

Amy pulled out my beginner piano book from when I was little and started playing notes (not following the actual music) while singing the words. When I asked if she wanted piano lessons she gave an enormously excited “yes!” Luckily I already know exactly the teacher I want for her (and maybe for Sarah if she is also interested). A friend of mine gives kids piano lessons and is an Alexander Technique teacher. How perfect is that?! I am hesitant to add yet another thing to our week but I also want to follow Amy’s excitement. If Sarah is interested then I want to make that happen too in part because her vision therapist is always saying that vision is rhythm. Sarah already improvises on the piano and it is surprisingly good.

Jeans. Those of you who know Sarah well know her love of jeans. Other peoples’ jeans. Recently she asked me for a pair of her own. She loves them!

I hope you are all well.

October 15

I’ve had some moments, mostly Friday afternoon and evening, where I felt embarrassed and disappointed about my parenting. I yell. I grump. I speak with judgement, disappointment, disdain, and impatience in my voice. I wish I didn’t. I’m not proud of that part of me. I resolve many times that I won’t do any of that anymore. Then I do. As I write these sentences I feel knee-high to a duck. I’m starting with this bit of things so that things start improving as soon as you read further! I’m also noticing that in the past I’ve been going away from something I didn’t want instead of towards what I do want. So, henceforth I will intend to be kind. That will be my mantra. I know I am kind already a lot of the time. I just want to grow that quality even more.

On Friday the girls walked to a friend's house together without me. It was just around the corner and didn’t involve crossing streets, but it still felt like a very grown-up thing to do.  As I watched from my house I could hear Amy telling Sarah they should practice about her allergies. Amy asked Sarah if Sarah wanted a peanut butter and jelly sandwich and Sarah said no. That moment felt so perfect I was almost teary.

From G.: "When I approach Sarah, specifically, I engage in very Sarah-specific and Sarah-plus-context-specific ways that individualize the experience.  Additionally, I carry with me experiences and knowledge related to speech/language disorders, behavior support, Son-Rise/Sarah-Rise, etc.  But if I back away further from “the trees” so that I’m in the atmosphere even beyond my professional knowledge and experience, and enter the human space, it strikes me that my overarching clinical (…and life, for that matter…) goal is that: nobody feels “less than.” I think that’s the rock-crystal core, everything boiled down to the smallest cohesive unit. And I believe Sarah is mostly swimming in a community pool of: nobody feels “less than.” It’s very wonderful.”

Indeed. So wonderful.

Sarah has been enjoying wearing my old capris pants with a pair of suspenders a volunteer got for her. Her love of suspenders in the first place was also because of a volunteer who wore his own suspenders often. There was one night this week when Sarah called out in her sleep, “oh no, my strap!” I went to help her and realized that she somehow thought she was still wearing the suspenders and that one had come unclipped. Once I told her sleepy self that she was still in pajamas and wasn’t wearing suspenders she quickly went back to sleep.

When Sarah called out her “oh no!” there was some part of my sleepy self that felt a heartache I haven’t felt in a while. It was the deep heartache that came with realizing something was “wrong” with my child; that was my moment of “oh no!”  I don’t want to see her situation as something wrong. And yet, how can I not also be aware of how different my life would have been if she had been “normal?” Yet again, if that had been the case I wouldn’t have known this other world that has opened my heart more than I knew possible. I have no doubt that I am a better person because of Sarah being Sarah. I have no doubt that not only is she a blessing because of her beautiful spunky sparkly determined ornery loving self, but she is a blessing because of the deeply amazing people that are now in my life. I also have no doubt that Amy is the most perfect sister for Sarah that I could ever have hoped for. She inspires Sarah, she fights and plays with her. She also gives me all the traditional-looking love and connection and parenting moments that I thought I had lost because my connection with Sarah is less traditional, though no less loving and wonderful. Amy is a blessing because of Amy being Amy, her beautiful determined cat-loving playful artistic affectionate quick-learning self. What a good pair they are. Writing all of this out has already helped me heal my heart that tiny bit more.

We have been enjoying the latest Sandra Boynton CD called “Hog Wild.” There is a song about being a C-A-T and the the girls like to quietly chime in their own whispered chorus of “that’s Olivia.” It was Amy’s idea and Sarah quickly started doing it too.

Amy has been helping Sarah with her seatbelt, either buckling it for her or encouraging Sarah to try again and again to be a pro.

The girls played a very short whiffle t-ball game. They each had a turn as the catcher and as the batter. Amy was upset that the game was so short. I couldn’t believe it happened at all. I spent a few minutes talking to Amy about how Sarah sometimes just leaves activities that feel hard for her but that if we keep celebrating her attempts then she will stick with it longer and longer. That is how it was when we started playing board games with Sarah. At first it was laughably impossible and now it is almost so easy as to feel boring.

Amy was telling me that her leg hurt when she tried to sit criss-cross. Isn’t that a fortunate moment to have a mom who is a massage therapist? I worked on her for about 15 minutes and she was then able to sit comfortably. I love this stuff. Seriously. I cannot believe I have work that I love so very much.

If your pants are too big, whether real or metaphorical, I hope you have whatever suspenders you need. I hope you feel like a pro. I hope you are celebrated for all of your small attempts at whatever dream may seem laughably impossible.

October 8

When I got home from my trip (which was wonderful), I soaked up love and welcome. Sarah was clearly pleased to see me when I met her bus and Amy leapt into my arms while telling me how much she missed me and loved me. I’ve been really focusing more on noticing the love in a bigger way than I sometimes might. Noticing the love that comes to me regardless of how imperfect I might be feeling. Noticing that the girls really don’t care if my clothes are fitting a bit more tightly or if my hair makes me look like a water buffalo. No one seems to care. It doesn’t stop any of the love. The only person who criticizes me seems to be myself. I am endeavoring to be more conscious of any mean thoughts and to change them, to see myself more as the girls do. One year I made my mom a present of an old pair of my glasses with post-its piled up on each lens with loving and true sentiments of how I see her. Because that is the thing: we need to see ourselves more as others do and we will probably be so much kinder to ourselves than when we look with our own eyes.

Sarah lost her ring. For real this time. It was just a small silver ring but she really loved wearing it and playing with it. When she lost it, either at school or on the bus, she was extremely upset. Once she regained her equilibrium I said maybe she could get a new one for Christmas. That seems to have solved the problem. I didn’t want to replace it immediately and thus have no consequence for losing it, but I do want her to have a ring if she wants one. Amy wants one too. Now I just have to measure their small fingers.

Friday night was the Fall Festival for Amy’s school. Last year the fall and spring festivals were rather stressful because I was mostly solo parenting. This time it felt easy because we had both parents so I didn’t have the stress of keeping eyes on two roving kids who want to do different things. 

Saturday we went to a pumpkin farm that had a ton of fun things for kids to do. With each thing we had to pull the girls away because we knew they would be upset if they ran out of time for all of the other activities. They began with playing in large boxes filled with dried corn. After having some food they discovered the live music and would have easily spent all afternoon there. Sarah especially had a glowing joy about her as she danced. When she first arrived on the scene no one was dancing and she was solo. Her moves and joy encouraged other kids to join in the fun. Next we went out to the pumpkin patch and play area that included a super long slide, a firetruck, rubber ducks that you could move down troughs by pumping water, and human-sized hamster wheels. We stayed as long as we could and when the tractor took us back to the car we were one of two cars left, which was hilarious because Carl and I have a small history of being the last to leave places. It was such a fun and (mostly) easy adventure. How do I have such grown-up kids?!?

May you see yourself through my eyes.

October 1

Lately Sarah likes to bring our stroller to Amy’s school pick-up. Either Sarah pushes an empty stroller or I push her in it while she reads. I love that. I love how much she loves books. Every morning I give her a book to read on her bus. Most of the kids have ipads but I don’t want Sarah spending her bus time that way. She gets her iphone time while waiting for the bus and that is plenty of time since I like to have her ready 10-15 minutes early.

Sarah lost a tooth! On Thursday. It was a tooth that had gotten pushed by an incoming tooth so that the baby tooth was at a very awkward angle. I'm so glad it is finally gone. Her teacher said she sent the tooth home in a bag in Sarah's folder but it wasn't there when I unpacked her things. Since we had the tooth case left from Amy's school, Carl sneakily put a small piece of a cracker in the case and taped it shut so the girls wouldn't discover the trickery. This way the tooth fairy could still come. Sarah couldn't have cared less but Amy definitely cared that all occurred as it should have. 

As many of you know, Sarah got tubes in her ears on Friday. It was supposed to be Wednesday so I had cleared my schedule for Wednesday and Thursday. When the anesthesiologist learned more details about Sarah he decided she should be seen at the main hospital instead of a satellite location. I wish they could have determined that long ago. Fortunately, they had a cancellation for Friday at the main hospital with the same doctor. The reason for the surgery was her frequent ear infections last winter/spring and her audiology test in the summer that indicated fluid that wasn't draining. The doctor said a lot of old fluid was removed during the surgery. 

The hardest parts of the ear tube procedure were the bath/hair washing that had to occur Thursday and her waking from the surgery. You may have heard her screaming, wherever in the world you were. She desperately wanted them to turn off the lights, but she was in a large communal space. She had her own private corner with curtains, but they couldn't actually turn off the lights. She would have nothing to do with apple juice or pain medication. She was so upset that there was no talking or reasoning or getting her dressed. Rather than waiting for her to move through her upset, we collectively decided she could just leave, hospital gown and all. No need to drink fluid and keep it down. They took her to the car in a wheelchair and we were on our way. We detoured to Carl's work because she kept asking for him. Once she was in the car she was calm. Once she got home and had an apple juice popsicle, then she was sparkly and playful and HUNGRY. She ate 8 very small popsicles, a small dish of ice cream, half a bagel with cream cheese, 8 oz of apple juice, and a fruit/veggie pouch. Later we went out to do a couple of errands. She was able to have her usual time with G. All of this with no upset and no pain medication. 

As you are reading this I am driving from Montana to the Poconos with my dear childhood friend. I am super excited that she will now live within an easy day’s drive. We are each driving a vehicle so we get to see each other at rest stops and the start and end of each day. There are also cats. The drive is beautiful. 

September 24

Sarah started asking to sit next to S, an older kid on her bus. Wednesday morning it was arranged so S was next to Sarah! They are now next to each other for every ride. 

One afternoon while eating yogurt, Sarah started singing "why did the kids put yogurt on Olivia?" Instead of "why did the kids put jam on the cat?" which is in a song from the Fantasticks. I worked very hard not to laugh.

Inspired by our time at the hotel pool last weekend, I joined a gym so I can use the pool. I love swimming but haven’t prioritized it for many years. I suddenly realized that made no sense and that I could just make it happen. I’ve also decided not to count my laps but just to swim because I love to swim rather than as part of any fitness goal.

Speaking of fitness goals though, I do seem to go through a cycle multiple times a day: I want to lose a few pounds and be more trim so I will feel more like myself. I can do this by changing how I eat. Just veggies, fruit, and protein. Just home made. But really I look great and should notice that instead of criticizing myself. All the people who love me love me as I am and still will if I don’t change. I don’t want to live a life that feels limited or strict. I want to eat delicious things from restaurants and bakeries too. I want life to feel full and flexible. Ok, no really, I do want to lose a few pounds…. Around and around that hamster wheel I go. I think mostly it is all loosely held and noticed. I’m mainly now reminding myself that when I feel good about myself and life then I tend to make better choices. I also make better choices when I have good food easily available and already prepared. That last step has been feeling slightly elusive of late because there are just other things I want to do sometimes.

Yesterday the girls had gymnastics. There are often moments when I marvel at all that Sarah can do. There are also moments that feel challenging, such as keeping track of my chickens in the shoe room when there are a million people there. Yesterday Amy was very complainy about how I didn’t give them more time on the hallway ramps and how I wasn’t taking them to the co-op to get a snack. By the time I got home, which was only 15 minutes later, I realized I hadn’t really been breathing properly and that I was holding all of my head and neck muscles tightly. I do this on many occasions but I’m starting to see more commonality in the situations. Large group settings. Keeping track of children. Whining children. Me wanting to just get out of the situation and be home. Now that I’m off my headache meds I feel more alert to when I tighten everything in such a way that it is like I am shrinking my head. While these moments aren’t fun, it is helpful to notice them and realize how often in the past I probably was doing the same thing but it was so constant that I wasn’t aware of it and couldn’t let go. 

Yesterday I created a crossword puzzle relating to neuromuscular therapy. I was inspired to try my hand at it when my teacher for the class I recently audited said that he might make one. Making crossword puzzles is hard!! Especially when you want to keep it to a theme. Carl said there is probably an app to make the process easier, but he understood that I wanted the fun of puzzling it out for myself. It was fun. And I only accidentally used words twice a few times! And I only needed to number a few things as something and a half. When doing all of this with pencil there is a point of no return because there was no way I was erasing half of what I had done.

The girls have their Halloween costumes. This is the first year I took them shopping individually and it felt so much easier! Amy is going to be a witch, unless she changes her mind, which has happened for the past few Halloweens. Sarah found a “gangster gal” costume that we are calling her business woman costume. It is black with pink stripes, tie, and lapels. She looks so good I can’t even stand it. 

This week has been so hot that we got the sprinkler going again. Amy prepared herself with her swimsuit, bicycle helmet, umbrella, and small broom! I love how her mind works to collect all of her props.

September 18

Amy lost her first two teeth! Miraculously, the tooth fairy even found us when we were in a hotel. For Amy’s first tooth she wrote herself a note to remember to put it under her pillow (Put [picture of tooth] undr pilo).

We attended a family wedding this past weekend, thus the slightly delayed sending of this update. (Also, due to the request of one of my favorite readers I will now go back to writing on Sunday instead of Saturday). The  whole trip went quite well, despite times when the girls had to wait for food and they were up past their bedtime. Given that, I am especially impressed with them. For the wedding itself there were three hungry kids (two of them mine) and if it wasn’t for Sarah having some dietary restrictions I wouldn’t have brought any food with me. Luckily, since I needed to bring a few items for her anyway I chose to throw some extra snacks in my bag and they saved us all from at least two melt-downs. Always, always, always bring snacks. 

Amy makes new friends wherever she goes and she was quick to become best friends with her cousin. She was in tears when they had to say goodbye. She was also in tears on Friday because she was missing school for our trip. She was upset about missing her friends and missing math class!

An excellent rest stop between Pittsburgh and VA along route 522 is the Virginia Farm Market. They have apples and pumpkins and cider doughnuts. They have a sandy area with a ropes course. They have a large wooden train. They have steps. They have flags. They have an old tractor. They have bathrooms. This was a highlight of our drive both directions.

One morning last week Sarah’s bus was slightly late and she was getting worried, as was I. When it arrived, Sarah said, “Hallelujah!"

Another sweet moment was when I was talking to a friend who was sad. Sarah snuggled up on my lap and kept giving me huge hugs. In general, she has been a bit snugglier than usual, especially when I say I am cold. She wants to help me get warm by giving me big snuggles. She also likes to have me pretend to be Olivia, our cat, rubbing against her face to say “hello and I love you.” Sarah then pets my head and back.

We have caught three mice (alive) in a week now that I have a new trap that the mice can’t outsmart. Our previous traps were either solid dark plastic or so opaque that I couldn’t see well. I used to be so scared of setting the mice free. I think this was because I couldn’t see what was happening. The new trap is larger and see-through and I’m not scared at all. I feel like there is some profound life lesson in this about seeing clearly what one is up against and then whatever it is isn’t so scary, even if it is something you don’t want in your life.

Now to free a mouse, far from my home.

September 9

Note to self: if the girls are allowed to play in the car I need to start checking it every time they are done to make sure no inside lights are on or else the car battery might die. For instance.

Last weekend we had a marvelous time camping. As we were assembling our enormous pile of stuff before loading the car I was feeling stressed and wondering why we ever go camping. We needed more food than usual because our intention was to stay for two nights, something we haven’t done since before Sarah was born. I was worried about us being cold so I brought many extra blankets and our winter coats and hats and gloves. And swim gear. Because Labor Day was going to be warm and beautiful. I actually did wear my winter coat and was glad to have it, though I would have been fine without it. We also used our swimsuits. Now I think we will only ever do two or more nights. It was so restful to have a whole day that didn’t involve any setting up or taking down of anything. We saw two people we knew and discovered that our campsite neighbors are friends with one of Amy’s teachers. It is such a small world! The girls went to the campsite bathroom all by themselves on multiple occasions, which is another amazing step towards being all grown up.

A small miracle occurred yesterday because I actually received a call in the morning from Sarah’s bus company letting me know that her bus would be late. Unfortunately this meant that probably the afternoon bus would also be late because that usually happens when there is a substitute driver. The tricky thing was that I had a client and Sarah has her time with G as soon as she gets home. I knew that I would have to cancel my client or gamble on the bus being on time. I lost my bet. Still, at least the communication was pretty good with all of it and thanks to G being flexible Sarah still got 1/2 an hour with him.

A friend suggested that in difficult interpersonal situations it can help to be neutral and not take anything personally. I said I didn’t know how to do this and I needed to be shadowed. He said he would just follow me around saying “it’s not about you” all the time. I have tried saying this to myself when the girls are whining or upset about something and it actually has helped me stay calmer. This is in line with the Son-Rise and Option ideas about how we are choosing our responses in any given situation and that other people can’t actually make us feel a certain way. What is useful is that this is a slightly different angle than I have tried before. 

For the past couple weeks our dishwasher has been non-functional. Today we await the delivery of a replacement! The thing is, I think I have actually done a better job keeping the kitchen clean without a dishwasher because I dare not let things get out of hand. I sort of wonder if we would be better off with me always hand-washing everything. I know that wondering will last about a nanosecond once the new dishwasher is installed.

I have changed the rules a bit for the girls. Instead of their morning phone/ipad time being a given, now they earn it the night before by doing whatever cleaning we ask of them and by getting ready for bed easily. So far so good. It helps to frame it as something earned by good behavior rather than lost by bad behavior.

I am now completely off my headache meds. Fingers crossed. Or rather, fingers working my trigger points regularly! 

September 2

Sarah started second grade on Monday! The most exciting part of this was that her bus (van) is new and has a new driver who is timely and friendly! Both girls are loving school. Amy has some neighborhood friends that attend her school and they run there together in the morning and run back home together in the afternoon, with the parents trailing behind.

Sarah had some homework that I was to help her with and I already managed to do it wrong and be stressed about it! Just a tiny bit. I corrected what I thought was a grammatical error on the part of the teacher and then realized it was probably intended and that I had misread the meaning of the sentence. I put a post-it note of apology on top of my correction. 

Swim lessons won’t resume until mid-September because the indoor pool is being repaired and it is tooooooo coooooold for the outdoor pool. The girls are disappointed but it is much easier to handle when we know ahead of time.

Amy loves chocolate chip pancakes (no syrup) and this week she poured the batter herself! 

Amy has two extremely loose teeth. She has yet to lose any teeth so she is very excited about this.

Sarah had vision therapy this week and did an amazing job playing catch for about 5 minutes with a large, soft ball. She can catch it out in front of her instead of having it fall into her body. She has probably had this ability for a while, but it was wonderful to witness it.

I feel like Sarah’s verbal ability has increased just in the last couple of weeks. Her dexterity with sentence variety and formation seems more fluid. It is as if she is just a little faster and a little sharper. 

I think last week I forgot to share about Sarah saying the snails on her pants were sad and crying tears out of their little eyes. For some reason her adding the word “little” made it super funny.

The girls have been having a good time making art with glue and glitter. Usually I put these supplies away immediately and I avoid bringing them out as much as possible. This week I decided to just let it be. There is glitter all over the dining room floor. There is glitter migrating through the house. There is glitter in Amy’s hair because she put it there. 

On Monday I forgot it was Monday and was convinced it was Tuesday when I invited some of Amy’s friends to come over after school. Luckily I remembered in time that not only was it Monday and that we had Sc coming to play in the SR room, but I was also seeing clients! I don’t normally do so on Monday evenings which is part of why I forgot. Anyway, there was an incredible amount of glue and glitter on floors and tables, but I got it all in order before heading to work, only feeling slightly foolish for misremembering the day. Tuesday afternoons are our most open and flexible so from now on I will schedule Tuesday things on Tuesdays!

Today is Saturday.