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.