March 27

We began today with an Easter egg hunt. Since there aren’t pre-made candy items that Sarah can have, the chocolate that I make can’t be out of the fridge too long or it might melt, and Sarah can’t have eggs, I hid plastic eggs (as I have in years past). This year I put slips of paper in the eggs as vouchers that the girls could use to get an extra episode of a tv show, an extra book reading, an extra snuggle, an extra chocolate shape, and extra kisses. In their baskets they also received store-bought applesauce pouches and fruit leather. Both items were consumed immediately. Then they began their day with chocolate shapes (as they begin most days with their chocolate treat so that it is out of their system by bedtime.) As with past Easters, Amy is the primary egg finder and Sarah finds a few. The vouchers had names so that each girl got the same things. Overall it was a success.

Instead of dying Easter eggs, this year I gave them fruit and veggie materials and they created food art. I cut apple slices to be vaguely egg-shaped and they had mashed avocado to paint with or use as glue. Sarah promptly said she was making an apple bagel with avocado cream cheese. I love her flexible creativity and pretending around foods she can’t have. Amy pretended it was apple toast. I made a bunny. Amy made a self-portrait. It was awesome. We have done the activity two days in a row and while no one has really tried new foods because of it, it is still a fun way to interact with food and then I don’t have to store the art!

When G. arrived on Friday we had a present to give him and Sarah had helped to wrap it. She gave it to him with no prompting from me and said, “for you.”  This was significant because often she wants to open any present there is. Also with G., during their SR time she did some writing on the Boogie Board (electronic slate). She chose to write “BIG” and he asked if she wanted to write “little.” She wrote “LTTE” with no prompting of how the word was spelled. Wow.

Perhaps the most exciting thing for me this week was seeing a specialist in neuromuscular (trigger point) therapy and myofascial release. These are modalities that I do too but it is hard to work as effectively on myself, and this person knows many more specifics than I do. I think this is exactly the combination of work that I need. I have tried for years to use various kinds of bodywork to get to the bottom of my cluster headaches. I am super hopeful about combining this with my increased Alexander Technique self-work. Not only is the AT work increasing my awareness a ton so I catch myself more often when I tighten my muscles, especially around my head, but it is improving my AT teaching noticeably. My tiny whispers of headaches have been shorter and less frequent this week compared to last week (my goal is to be free of any traces of headaches for a whole month so I can come off the medications). I think my tension has been accumulating for years. The trigger point and myofascial work can help undo the now-ingrained tightness; the AT work can help me not create more tightness. (Caveat: I have been super hopeful about possible solutions in the past and none have been the answer so it is possible this isn’t quite it either. I do believe though that there is an answer out there and I will keep trying things until I am free of the beast. Hope does not hurt and this is my newest hope that I will pursue with full enthusiasm.) Yesterday I was resting (diligently un-working) and then Carl realized that when Sarah was in our enclosed back yard she had opened the gate and left the yard into the alley. She hadn’t gone anywhere but we still need to find a way to lock the gate so she can’t repeat such a move. What was most interesting was to feel my head go from totally at ease to being clamped in a vise grip as my thoughts went to fearful scenarios. Ah. Thus we see how I have been clamping my muscles around my head as my thoughts whirr. Time to breathe and let go. Perhaps a gift of these headaches will be to help me learn to be more present, as I notice it is to my detriment to be elsewhere.

May you all have delicious food creations, extra snuggles, and joyful hope.

March 20

My sweet Amy just turned 5. I love how driven she is to create art. I love how she always wants to be dressed appropriately for any occasion (what is appropriate is determined by her) and changes her outfit about 20 times a day. I love how she creates pretend treats that are assembled from all the small pieces of all games and toys we have. I love how she plays all the time and invites Sarah to join her play, either directly or just by being herself and then Sarah observes and decides to join her. Of all the things we have done to help Sarah, having Amy was one of our best decisions ever. This is not to put pressure on Amy to do anything other than be herself. Herself is the biggest gift she can give to all of us and what a wonderful gift that is. Since we share a birthday, Amy is definitely the best birthday present I have ever received.

My sweet self just turned 39. I love how determined I am to find a way to help Sarah thrive. I love how determined I am to find a way out of my cluster headaches through alternative means if possible. I love how I continue to explore and learn, always getting up again after feeling low. I love the network of love and support that I have welcomed into my life. I have been really good at finding really good people to be with and help all of us.

Speaking of birthdays, I find it remarkable that one of our past volunteers has her birthday the day after mine/Amy’s and another past volunteer has her birthday the day after that. 

In my journey to let my head and neck muscles relax I have done Alexander Technique Constructive Rest multiple times a day every day for the past week. Sometimes I feel better and sometimes I feel tighter or twisted for the rest of the day. I think my awareness is increasing and changes overall are happening. Those changes then feel strange because they are not my habit and my habit is what feels normal. I do notice much more quickly when I am tensing muscles anywhere or clenching my teeth. My headaches have been very mild this past week, to the point where I wouldn’t really count them as headaches, except that they do count in terms of when I can stop taking the medications. I need to have a month with not even a whisper of a headache. 

Thanks to our volunteer L, our house is currently full of a multitude of library books about clocks and time. It is awesome. I want to emulate this in the future around other topics and areas of interest.

Sarah went to school every day this week. She still talks at times when it would be appropriate to be quiet and her talking is her verbal isming. At first I was feeling frustrated about this, and then I realized that it is incredibly awesome that the girl who didn’t really start speaking until she was 4 1/2 now talks so much that it can be deemed a problem. That is the most awesome problem ever!

An awesome Sarah moment occurred on Friday afternoon when Amy threw up unexpectedly. Mom-Mom and Pop-Pop had just arrived (and we are now in the midst of a wonderful visit) and I thought I needed our customary throw-up bowl. I called to Sarah to come to me right away. She did. I asked her to go to her room and get the throw-up bowl and bring it down. This turned out to be closing the barn door belatedly, but what was super amazing was that Sarah did everything I asked and did it promptly. What a super helpful big sister!

When Mom-Mom and Pop-Pop arrived, Sarah ran to the door, peeked around the curtain, and opened the door with great delight. She has loved to climb on both of them. At one point she went over to Pop-Pop and said clear as a bell, “Pop-Pop is reading the newspaper!.” None of these wonderful things are new, but they are still something that I marvel about and delight in. One thing I really love about Son-Rise is the idea that I can value social connection way above and beyond any physical or academic skill. Certainly we hope Sarah can learn to tie her shoes or do math, but the most important thing is that she connects joyfully with other people. From that perspective, where adults are concerned, we are done. Hooray!

I wish you all an appreciation of your own sweet selves.

March 13

We let Sarah take Monday-Thursday off from kindergarten. We decided each day at a time. If she said she didn’t want to go I said that was ok. It felt really good to back off from pushing her at all (realizing from the previous week that pushing her to go was not benefitting anyone and was harder for her than I initially knew). Friday she did go to school but with Sonia there right outside the classroom so that Sarah knew she could leave at any moment if she needed to go home for any reason. Sarah stayed the whole time! (We also are now aware that it would be good to focus on helping Sarah not speak when others are speaking. Apparently she has times of talking to herself and not quieting upon request for long stretches of time. I didn’t know that this has been going on for the past month at school.) 

After school on Friday I took Sarah to be evaluated by a public school evaluator. I liked the person very much and even though I wasn’t in the room the snippets I heard from Sarah suggested that she was in fine form. Now we wait for the results and recommendations. Sitting in the office of the public school for two hours wasn’t the best selling point for me wanting Sarah to go there, but I realize her classroom would be a different environment and hopefully less loud and busy. We are still planning to hopefully find a good placement for her for next year but if nothing seems right then I am more at peace with the idea of continuing homeschooling.

I had several wonderful play sessions with Sarah and I felt like we really reconnected this week. She wants me around more than she has sometimes expressed, including wanting me to sit with her for her 10 minutes with the iPad. 

I read an amazing book that a friend recommended: It’s No Accident by Steve Hodges. This gives me a whole different perspective on what may have been going on in Sarah’s body recently. It is possible that it wasn’t related to food at all, or not in the way I thought. (We are still going to retest her blood regarding a possible allergy/intolerance to wheat and eggs.) I now know that apparently it is possible to be having daily bowel movements with good output and still be chronically backed up and carrying a backlog of poop. This is very common with kids who hold or used to hold it in. Sarah was an expert holder-inner for years. So it is possible that her body just reached capacity and that is why we were dealing with dirty undies for so many many many days/nights. We now seem to be in the clear but I want to discuss things with her doctor and maybe get an x-ray or ultrasound of her bowels to see what is really going on in there. If there is a backlog then there are steps to take to clear it. I wish that more professionals understood this possibility and could have mentioned it to me when I described our situation. While we do not know for sure what is going on, this possibility makes so much sense to me and relieves a feeling of guilt that maybe I recently screwed up with her food. 

Speaking of body situations… I received an occipital nerve block on Thursday to hopefully interrupt my cluster headache cycle. I was terribly nervous. I don’t like needles, I don’t like signing waivers that have any mention of death, I don’t like needles in the back of my head. However, I do like my doctor and I do want the headaches to stop. I have not had any headaches since the injections beyond a level 1 (10 being a level at which bashing my head on a bathroom sink seems attractive). I also understand my whole situation more than I previously had. Apparently, all of my times of toughing it out have been strengthening the pattern of pain and making my body more used to it so more likely to continue doing headaches. Sigh. Now I have a few more things to do if/when I get a headache to interrupt it sooner. I am needing to retrain my brain/body to not do headaches. I can take Aleve. I will order oxygen. My idea is also that when I feel even a whisper I focus on the left side of my head which feels good, healthy, and normal. My doctor said in her ten years of giving people nerve blocks, I have the tightest muscles in my occipital region (lower back of my head) than anyone she has ever seen. I do like to be the best! :) So I am going to do Alexander Technique constructive rests once or twice a day until this headache pattern is clear, and hopefully I can continue beyond that. I am going to be more attentive when I give massages to not over-tighten my hands and arms because I feel that pattern of tension travel right up to my head. I can tell that my patterns also includes over-tightening my legs and torso. It is a whole body pattern, not just something in my occiput. The tension is the chicken and the egg regarding the headaches because my muscles get crazy tight during a headache because I am in such pain. Anyway, it feels good to understand the situation more fully and be able to take steps to ameliorate it.

To end on an amazing note, Sarah buttoned Amy’s dress for her! I love this so much. Sarah also joined Amy in riding on a broom-horse and in using chalk to color our swing set. I love how often Sarah joins Amy in her play.

May you all have easy neck muscles and new understandings about any struggles.

March 6

This felt like a hard week and I wanted to wave my flag of surrender many a time. Sunday night Sarah got sick with a tummy bug. I spent the night on her floor so I could be ready at a moment’s notice to hold a bowl for her in case she had more puke or to give her a drink of water. She was home sick Monday and I cancelled my morning plans so that I could be home with her and Sonia could stay away so as to hopefully remain well. Tuesday Sarah stayed home from school but Sonia was here because Sarah seemed very much on the mend. Wednesday and Thursday Sarah went to school, though she protested first. Thursday afternoon her teacher said that both days Sarah had spent a large chunk of time at school crying for me. I don’t know if this is her having a harder emotional time because we are in a new developmental stage or because her ongoing dirty undie situation is stressful for her especially when it happens at school, or if it was that she still wasn’t well and I didn’t know that.  Wednesday Carl got sick with the tummy bug and Thursday Sonia got sick with it and was out Thursday and Friday. Thursday night I had to cancel my client 15 minutes before our appointment because Sarah suddenly showed significant signs of pink eye. I cancelled and I sent the sitter home. Friday morning I took Sarah to the doctor. Two weeks ago at her well-visit check-up she had an ear infection but because she didn’t seem bothered by it we didn’t treat it. She still had the ear infection. Now she is on Amoxicillan and eye drops. Thursday night I also had a headache for most of the night that continued at a low level throughout Friday. Saturday morning Carl and I woke up with pink eye. Earlier in the week Amy had an audiology test at her school. She didn’t pass in one ear. Friday they did a retest after a discovery of faulty equipment. She passed! That last bit was wonderful news, but the first bit of not passing did not add ease to my week. Saturday I spent a large portion of the day reading in bed to refill my Jenny reservoir. Today we had an amazing team meeting to start the day (though not without first thinking Amy was getting the tummy bug and canceling the sitter so that Carl stayed with the girls and missed the meeting; Amy has been in perfect shape since 10 minutes before the meeting and continuing throughout the day, which is awesome but I might wish there had been no blip of tummy discomfort).

Anywho, that is a lot of words. It has been a lot of week. I have totally rocked many moments. I have also felt very empty and as if I wanted to just turn to sugar, fat, salt, and comfort food but couldn’t actually find the right food and I know that certain sugary foods won’t actually help me feel better and will only make me feel like I am getting a cold. This awareness bit can sometimes be so inconvenient! :) There were a few times when I just sat on a small step stool because I couldn’t think of anything to do or eat or say that would help me feel different so I just sat with myself and that actually did help (of course).

Back to the team meeting…I shared all of my recent struggles and we talked about ways to incorporate more academics into the SR sessions in the most SR-ish way we can. I love these amazing, creative, dedicated, loving, smart, wonderful people!! I think we all felt invigorated and ready to leap into future SR sessions. I realized that I can teach history from the angle of whatever Sarah says or does that reminds me of something from the past. I can look up the history of clocks. When she is persistent about wanting something I can connect that to the persistence of women working to get the vote. I can wear a dress from the Civil War era that is covered in dots and then talk about how things were different then as compared to now (clothing, technology). We thought about ways to incorporate math with Sarah’s love of confetti or counting how many letters are in the state names on the map in the SR room. We talked about using Sarah’s love of her own personal history to help her with telling stories and we can tell her our stories too. We discussed how to have things go wrong. Maybe we try to solve a problem but we don’t count right and we need her help to get it right. Maybe we take apart various contraptions that I find at the center for creative reuse. We want to have whatever we are doing be fun or interesting for Sarah, salient and relevant to her loves and current interests.

One highlight of the week was when Amy decided to make herself look like Daniel Tiger. Sarah saw this and immediately grabbed markers to decorate her own face. She then said to her own reflection, “I look gorgeous.” I love how often Amy will do or say or sing something and Sarah will notice it and want to do it to. In those moments I feel like my work here is done. 

I hope you are all well.