March 31

We don’t see the accumulation of the need to rest and rejuvenate the way we see piles of laundry. We may feel the need to do nothing, but so often it gets put off as the reward that will follow finishing the visible piles of somethings. The problem is that the visible piles never really go away. Being more concerned about my health led me to spend more time sitting quietly and doing nothing than I usually do. It was lovely. I don’t know if it made a difference for my spine. My fingers are still tingly, probably because I’m paying attention more often and possibly manifesting the symptoms I’m scared about, and possibly because I’m tightening my neck and arm structure out of fear. I have been meditating and praying more, with the idea of allowing God in the same way I might allow my neck to be free and easy (and remind myself of this every two seconds). It is really about allowing the fact that I can’t control everything and should stop trying. I don’t know the answer to anything. I do know I noticed a difference with my connection with Sarah. Overall we had one of the most harmonious weeks we have had in ages. 

It has been a strange balance to have more times of peace than usual coupled with more times of fearing that I will die imminently (no evidence for this at all, I am just skilled at panicking). I have moments where I am scared and convinced of dire things. Then I wave it away because frankly I just don’t have time for that right now! There are things to do! There is food to make and laundry to do.

Last weekend we had Mom-Mom and Pop-Pop visiting. It was a lovely visit with more overall ease in the Sarah department than we sometimes have had. Mom-Mom noted an increase in Sarah’s imaginative play.

Sarah now likes to be called Mouse. This is probably a combination of the mouse in the books such as If You Give a Mouse a Cookie by Laura Numeroff and the mouse in A Visitor For Bear by Bonny Becker. If you haven’t read the latter and if you have young kids or like kid’s books, I highly recommend it. There is a line, “There was the mouse! Small, and gray, and bright eyed” that gets repeated often. Sarah and I changed it to, “There was the mouse! Small, and snailed, and bright eyed” when she was wearing her beloved snail shorts. 

At the end of gymnastics yesterday, Sarah told me she was exhausted. We had fun saying and spelling “exhausted mouse.” Earlier in the week while Sarah waited for her swim lesson we decorated my face with stickers. Both of these moments involved such sweet, connected space with Sarah and easy joy in my heart. They felt like flashbacks to our earlier Sarah-Rise days. It feels good to be having more of these moments again, mainly because I’m showing up for them. The key now is to remember that showing up for them takes hours of sitting in stillness and inviting ease, safety, flow, and peace. It really does. It is so easy to think I can maintain the peace without the preparation, but I don’t think I can. Now, if you’ll excuse me, I have a busy day of doing nothing and I must get started.

March 24

Some moments are so perfectly wonderful... this morning we woke to hearing Amy warning Sarah not to step where there was water on the bathroom floor. Sarah said she wouldn’t step in it. Amy slipped in it. Sarah asked if she was ok. I just love it so much when they have easy, seemingly grown-up interactions. I love it when Sarah can have a present, flexible, responsive conversation. 

Another moment from this morningthat warmed my heart was both girls describing in unison the waffle toppings I had prepared: bananas, blueberries, strawberries, and chocolate chips. They were also wearing matching multicolored heart pajamas. So adorable. 

In contrast, last Sunday I felt despairing regarding Sarah chewing on the inside of her cheek so that her saliva was tinged with blood. She was picking at her teeth and gums. She was still coughing a lot. I felt sad and worried that her future would include self injury. I could barely drag myself to Zumba and now there have been two Zumba classes in which my teachers noticed that I was sad. That is not my normal way of being, especially in Zumba. But sometimes things just feel so impossibly hard regarding parenting Sarah. Now that everything is fine and back to normal I can see my worry was out of proportion to the moment. And yet, this weekend has also had frustrating moments. When we had a final birthday dessert with a candle for Amy, Sarah swooped in and blew out Amy’s candle. Amy was very upset because she felt that Sarah took her wish. Sarah also grabbed food from my plate without asking. Argh. So I guess things are normal and par for our course. 

On the plus side again, Sarah’s swim teacher said all she needs to do to move to the next level is jump in by herself. This is huge. She has been a minnow for about a year and a half. 

Getting me in a worried snit again, I have had some lack of full feeling in my thumbs for a while. Lately I have also had tingly hands sometimes. So I had an MRI of my neck and it showed some bulging discs and some degeneration of some of my vertebrae. In the words of Peg to Cat, “I am totally freaking out!” I know one of the best things to do for myself is the Alexander technique and I should do it ALL of the time. Part of that involves having a free and easy neck. That is not so possible for me when I am fearful that I am not as whole and well as I thought. I get scared of what it might mean for the future. I will have a nerve test. I have had some times of deep crying interspersed with online shoe shopping for the girls and myself. That is my balance for the moment. 

I hope you are well and whole. I hope you can cry if you don’t feel that you are. I hope there is a balance between the hard and the lovely. Any spare love that you can send to my neck is most appreciated. 

March 17

Sarah has yet another new swim teacher and the first session went well. For Sarah’s last two lessons she has really been wanting to do things independently so I see a glimmer on the horizon of her being ready to move to the next level. She just has to jump in by herself without needing the instructor an inch away.

It turns out that Amy was erroneously moved to the intermediate gymnastics level, which is a relief because she was pretty unhappy after her first class. While many new things can often feel too hard, in this case it really was too hard.

Amy’s 8th birthday party was yesterday and she, Sarah, and some friends had a great time at an art studio making mermaid tails that they could wear, sort of like aprons. As per request, I made a chocolate cake with pink frosting.  I decorated with a cat face made from Sarah-friendly chocolate candy and chocolate chips.

The girls have both been sick this week, alternating days home from school and both being home on Friday. They both have persistent coughs, for which Amy is now on antibiotics but apparently Sarah doesn’t need any (yet). Sigh. Sigh. Sigh. I feel like we often have some chunk of the year when I forget that it is possible for all of us to be well at the same time. The week has been full of snuggles and laundry and reading and watching tv. I also discovered the miracle of having groceries delivered. On Wednesday, Amy needed to be in bed all day but I knew we were going to have a Sarah yogurt emergency and things with her had been difficult enough that I didn’t want to add to the challenge. A few minutes with my phone and a couple hours of waiting and I had yogurt delivered to my door, along with other groceries. Amazing.

March 10

Sarah had her school sock-hop so she got to wear her plaid dress, pink jacket, cats eye glasses, and the nail polish her classmates sent home. She had a great time. Amy’s class was celebrating Dr. Seuss and Read Across America so she had various ways to dress each day. My favorite is always mismatch day because that is how my kids dress almost all the time. On Friday it was crazy hair or hat day so she colored her hair with hair chalk in streaks of many colors.

Friday morning Sarah had her well-visit with the doctor she has had since she was born. When the doctor entered the room Sarah greeted her enthusiastically by name. I was appreciating how much Sarah does this with people and thinking maybe I could emulate her a bit when I greet people. It also always feels good to see this doctor because she knows Sarah’s whole history and celebrates how amazing she is and how far she has come. When I took Sarah to school after her appointment, all of

the students from her resource room came to meet her. It was so nice. I love how she is loved. 

After buying the online course on positive parenting, I haven’t listened to any more of it. Instead, I remembered my copy of Parent Effectiveness Training by Dr. Thomas Gordon. My mom gave it to me when Sarah was born and I read part of it and then basically forgot about it. It is excellent and is already helping me think differently about how I approach most parenting struggles. I had at least a couple of moments that felt different and successful. For one such moment, when Sarah came home from school she started loudly insisting that she would wear shorts to go get Amy from her school. Instead of being louder or forcing, I just let her go upstairs to do her usual after-school things. I let the feeling of frustration and powerlessness wash through me. I cried. When Sarah came back downstairs she hadn’t changed into shorts. She asked me what was wrong. I explained feeling frustrated and powerless but concerned about her being warm enough. She listened and then we left to get Amy, with Sarah still in her regular school clothes. Normally such situations could escalate but it seemed like when I stopped fighting the moment it could pass more easily. Sometimes things can be true and wise and obvious but they are only obvious once someone points them out to me. I am hopeful. I feel like I see a path to be more of the parent I want to be in a way that is easier instead of harder than what I have been doing. (Now please everyone pretend I didn’t write any of this so that I don’t jinx it and lose my insights!)

I’m away for the weekend visiting one of my best friends and it has been lovely. The only downside is that my cold peaked while here so I have not slept well and I don’t think my friend has either. Last night I had a lot of trouble sleeping because I couldn’t breathe through my nose and sometimes I coughed a lot. In the wee hours of the morning my friend came in to ask if I was ok and if I wanted some hot water with honey. I almost declined out of some misplaced streak of grown up independence. But I said yes and it was so lovely to have that little bit of help at that moment, and then I finally slept for a couple of hours with a calm chest and I could even breathe well. Sometimes it is the little things. 

May you have someone to offer help when you are having a rough time. May you remember to accept it. 

March 3

Almost always after I write about an insight or having a really good connection, the rest of the day has moments that have me feeling like a liar and that I need to issue a retraction. Last Sunday was just that way. Sarah and I had some very rough moments, some of which impacted Amy and had her feeling upset too, which added to my temporarily feeling like a terrible mom. 

I have taken steps towards adding support for Sarah and myself. This week I will have a craniosacral session (with the intention of also scheduling one for Sarah) and meet with a massage therapist who specializes in PTSD. I also signed up for an online course in positive parenting solutions. The first part of the course talked about how to set up agreements with your kids in advance regarding common challenges and having a consequence that fits the situation. They have to understand the consequence ahead of time and repeat their understanding. Then it is really putting the power more into their hands. We have done similar things in the past but we hadn’t been doing it consistently. Yesterday we implemented this regarding the girls playing Mario racing games, which usually has resulted in much screaming, whining, and complaining when their time is done. After our agreement everything went as smoothly as if there was never a problem. Now I just need to do the rest of the course to get ideas for other challenges that don’t fit the model of setting an agreement and consequences. 

I have had a major insight regarding when I get mad about the mess in our house and want to get a dumpster and yell at everyone because I’m the only one who cleans, blah, blah, etc. I think it is closely, consistently related to when I feel powerless or frustrated as a parent. When things are going smoothly then I happily step around the mess thinking that this is just a wonderful house with kids. When things don’t go smoothly then the mess is suddenly unbearable and the source of all my strife. 

Amy had the loosest tooth ever that would not come out. It was flapping around, as if not attached, but it would not come out. Last night she was ready for help but was also scared. She sat on my lap while I described a scene with our cat dancing around and singing songs from “Annie” such as “You’re never fully dressed without a meow.” Meanwhile, Carl quickly gave a tug to remove the tooth. I think we all feel some relief.

Amy wrote a nonfiction book about how to play with cats. It is really wonderful. She labeled each part of her illustrations such as “rug” and “cat.” My favorite is her picture of a hand with wiggling fingers. 

May your insights last longer than mine!

February 24

We had some big moments yesterday. Sarah didn’t want to get out of bed to go to gymnastics. I stayed calm. I figured out a way to have us in harmonious energy instead of combative energy. We went to gymnastics and I didn’t struggle as much as usual. The biggest deal, though, was that we were a little late and I was relaxed and the world did not end.

When Sarah and I are arguing about something she will often say, “Ok, fine!…” but then she fills in the rest of the sentence with the thing she wants. Even though this comes during frustrating moments, it is still hilarious. I keep trying to explain that when you say “ok, fine!” you then say the thing that the other person wants. 

We had a Sarah-Rise team meeting for the first time in an extremely long time. We are a small team now, with just Carl, G, Sc, and me. I expected us to talk about how to help her focus on academics or at school better. What we actually talked about was so much better and will probably impact school and academics too. Mainly we talked about the moments when Sarah is resisting us about something, usually when it is time to go somewhere, and she just gets stuck in place and is spitting/giggling/screaming/putting her hand in her mouth and seems to be unreachable. Those are the moments when I can feel the most panicked that I am in some way losing her. I have been so frustrated myself that I was seeing Sarah as being bad, despite my mom’s reminders that she wasn’t/isn’t. G said it sounded like Sarah was in super fight/flight/freeze mode and that her system was in full panic mode. Oh. Oh my goodness. Oh my poor little Sarah. How did I not see that?! Sc wondered if there could be any relation to Sarah’s seizures or the anti-seizure medication. I have sent a message to Sarah’s neurologist asking this and I sent a message to Sarah’s teacher to see if anything of the kind happens at school. These stuck moments aren’t something that Sc or G experience because when they are with Sarah it is in the SR room, when there is basically no pressure on Sarah to do anything she doesn’t want to do. It was immensely helpful to describe our experiences to them and have such loving, compassionate, insightful listening and problem-solving. G and Sc are so deeply, phenomenally amazing that I still can’t quite believe our good fortune of having them in our lives. Now our focus can be on helping Sarah’s nervous system calm down, which also means helping my own system calm down. One strategy is to play music that will help one or both of us feel calmer. Yesterday I played music when we were both getting mad and it did help. I am also aiming to have more moments of meditation, self-Reiki sessions, or Alexander Technique constructive rest for myself. The first step in helping Sarah’s system be calm is making sure that my system is calm.

Sarah was sick Sunday night and then for the whole week. It was just a cold, but it was enough of one to keep her home from school most days. It was also enough that I went into hyper-vigilant panic mode for two of the nights, flying out of bed at the slightest sound and panicking that she would have a seizure and that somehow that would equal death. I could rationalize that she was ok and would be ok, but I couldn’t seem to stem the tide of adrenaline coursing through my body. I have read that parents of kids with autism or other special needs can essentially have a form of PTSD. This seems quite plausible. During the SR team meeting, we also realized that Sarah may have some PTSD from her various times in the hospital, especially when she had to be held down for the EEG wire placement while she was screaming and fighting it for all she was worth. She probably also absorbed panic from me during her birth because I was so terrified that I wouldn’t have an alive baby. So. With this perspective coupled with the fight/flight/freeze insight, I have a new vision of my dear, sweet Sarah. I have a new approach. It isn’t perfectly impervious to her temper or her ignoring what I say, but it does help me become kinder, more playful, softer, and more creative about how to be with her. The plus side of her being home sick for much of the week was that we got a lot of snuggle time. My favorite moments were those spent in my bed, with each of us reading our own book. She would pause periodically to say how much she enjoyed reading together! Me too!! We had many moments of calling each other by her new favorite pairing of names, which are those of her great aunt J and uncle T. Saying those names can help her change her energy to sparkly connection instead of resisting. It can become wearisome because of the frequency, except when I remind myself that it helps calm her system and helps us connect. 

Thursday morning, Sarah needed to be home from school but I needed to teach so Sarah helped Grandma paint a fireplace. Sarah loves wearing other people’s clothing so it was perfect for her to wear some of Grandma’s clothes for painting. She looked like a miniature version of Grandma, complete with a handkerchief on her head. 

Amy moved up a level in gymnastics! It wasn’t on my radar as a possibility at all, but starting in two weeks she will be in the intermediate class instead of the beginner class. This is wonderful and exciting and will also mean gymnastics takes 2 1/2 hours of our day instead of 1 because the girls won’t have their classes at the same time anymore. We also have to be more careful not to have two absences in a row.

May you all have people to listen to your experiences with love, insight, and wisdom.

February 17

Sometimes things work out better than you could imagine. The girls had their first ski lessons for downhill skiing today. The most amazing thing was that Sarah’s instructor is a teen leader with the Friendship Circle, an organization that works with kids with special needs. Seriously. How did we get so lucky?! Amy’s teacher was also a good match for her. The lessons were individual and each girl did beautifully. Amy was going down the bunny slope on her own by the end. Sarah went down with help but as a single smooth ride (by the end). What also amazed me about the whole thing was that we had no hesitation about Sarah’s ability to handle such a challenge and have a private lesson (no parents allowed). We have really come a long way from all of the things that used to seem impossible (walking, talking, eating). Now I just need to remember that our current challenges (screaming, resisting, spitting, etc) are just as surmountable. Every single challenge has at one time truly seemed questionably attainable or laughably unattainable, until the challenge had passed. I can bog down in current tough moments when I think they won’t ever change. But why won’t they? Doesn’t all evidence point to change and growth and possibility? Isn’t Sarah’s passionate stubbornness actually part of why she can do things? Even if it seems to get in my way now because I want my passionate stubbornness to win?

Sarah has a new swim instructor and I feel like it will be a good match. All of her teachers have been fine but some of them clearly are able to delight in her while requesting the right level of challenge. This new one seems to have the possibility of delighting in her. I hope so. For all of the times I may be frustrated and not find delight, I still want everyone else in her life to delight in her spunky self. 

Valentine’s Day went well. It is a huge holiday in our household because what is not to love about hearts and flowers and chocolate and making art? So that Carl and I could go out, I arranged for one of the girls’ favorite people in the universe to come over for a special Valentine’s Day party. I decorated with streamers and flowers. I surprised them with heart umbrellas and little nail polish kits. They ate tomato soup and heart-shaped toast. They had chocolate covered strawberries for dessert. Apparently they did their nails while listening to songs from “Annie.” Carl and I had a very mediocre dinner but we did enjoy walking 90 minutes home. We could have gotten a ride but we didn’t want to get home too soon! We knew there was a fun party and we didn’t want to get in the way. 

Thursday also had some kerfluffle due to the morning being slightly different than usual because of Valentine’s Day. I forgot Sarah’s anti-seizure meds. Due to various other factors, the earliest I could go out to her school was 1pm. Unfortunately when I got there I discovered that I didn’t have enough for a full dose, not by a long shot. Sigh. There wasn’t time to go home and back again. Then her bus was over 30 minutes late! So her first dose was quite late. It seems to have all been ok, but what a day!

May things work out better than you hope or expect.