April 17

Just because you come late to spoken language or find some words hard to say doesn’t mean you can’t be a word nerd. Yesterday Sarah came down for breakfast and declared, “Amy is ornery.” I’m so proud! 

We did a follow-up x-ray and Sarah’s digestive system is much clearer. YAY! She didn’t go to school all week except on Friday, but Friday was a great day for her. Her last couple of volunteer sessions have also been extra wonderful, with her volunteers noticing increased connection and spark. On Wednesday, L. wrote, “Sarah was on fire today - really sharp and inquisitive and funny. She really must be feeling so much better and clearer. I could see all of the things we dream for her today!”

There was one day when Sarah asked for a protein shake and as I went to get her almond milk for it I sang a little made-up “ boopity boopity doopity do” song. I paused just because I had gotten the milk and then Sarah picked up the tune and sang a little bit! I hadn’t even been trying to invite participation! Another time when I asked Amy to get her water bottle, Sarah said, “I’ll get it!” and ran to do just that.

This week overall has felt super amazing in many ways and I also feel sort of small, raw, and confused, while also feeling excited, determined, relieved, and inspired. 

We started the GAPS diet for Sarah over 3 years ago to see if it would help her cognitively but also to help get her off of laxatives, which she had been on for basically her whole life. We thought it had worked. I certainly wouldn’t wish to undo it because now our whole family eats way more healthily. However, we now see that it really hadn’t worked in terms of constipation. Or maybe it did and didn’t at the same time. I don’t know how old her blockages were. I didn’t know that a person could be backed up and still poop regularly. So will things now be ok since we cleared the blockage? Or does her slight hypotonia (low muscle tone) contribute to the problem in a way that diet can’t solve? Are many many foods actually ok? Or are even more foods not ok? I know nothing! I am confused! I am eager to hear from the naturopath with the results of the most recent tests we did, some of which will give more information about allergies and intolerances. I am mainly so relieved that we are clearing the blockage and that Sarah is responding so well. 

I also feel incredibly hopeful about ending my cycle of headaches and possibly never having them again. I have no proof except what feels so right and true in my cells. I feel like with my team of massage therapists, Alexander teacher, my own AT work, my acupuncturist, and my confidants I am in the best possible place to escape the cluster. I am aware in ways I never have been of how my headache pattern fires when I tighten certain muscles, which I habitually do all the time. This is so amazing to notice because it gives me the power to consciously change my habits (it takes a lot of time and diligence and awareness but is soooooo worth it). It is also incredibly humbling if this really is the way out because then it has been my own self completely responsible for these headaches all along. Still, I feel like everything is really going to be ok. I am healing from trauma to my system that I didn’t even know I was carrying. I have had such ongoing low-level fear of the headaches for the past 20 years. I am also more aware of some of the fears I have been carrying regarding scary moments in Sarah’s life (her birth, her seizures as a baby, her falling down stairs, her pneumonia, her anaphylaxis, her not wanting to eat for the first couple years of her life, her coming to milestones so late that I didn’t know if they would happen). It is a relief to unearth the places in my muscles where I have been holding these fears that I didn’t clear at the time. Now I am clearing them and I’ve had some good cries doing so. I could feel in my heart how much grief I carry about maybe not doing enough for Sarah. When I stepped in to tell myself that was crap because of course I do enough then I could feel more tightening. I needed to let the grief be there, let it be noticed, and then I could let it go once it had said its piece. 

I want to run around with a large flag of joy streaming behind me, yelling to everyone about how I have the most amazing life. The most amazing support team! The most amazing husband! The most amazing mom! The most amazing bodyworkers! The most amazing Sarah-Rise mentor! The most amazing volunteers! The most amazing sister-in-law! The most amazing overall supportive family! The most amazing overall supportive friends! The most amazing daughters! The most amazing current school for Sarah! The most amazing house! The most amazing jobs! The most amazing varied ways of supporting Sarah! 

Some of the biggest blessings in my life have come from the things that have felt the hardest: my headaches and Sarah having special needs. Look at what a treasure trove has come from that! I know so many deeply incredible people that it boggles my mind. 

I am renewingly aware of the tiny works of art in tiny moments of life. The little things that Carl does when he comes home, having loving attention for me and the kids regardless of what his day was before that. How does he do that?! The way Sonia can read my mind and take care of something in the house or be with a child before I even say the thought. The way my volunteers come every week and greet Sarah with such joy and delight. The way my bodyworkers care so attentively for my muscles and self, sensing what needs to happen when I am not even consciously aware of it. In my very clear moments I can see that I could approach each moment of life with the same thinking I do with my clients, thinking of how to support each fraught moment as I would support a tight muscle. Press it? support from elsewhere? give a slight and slow tug? just wait? This clearly feels like the answer to life, the universe, and everything. And then my kids whine and yell and I somehow am not so clear anymore and my habits come in in roaring force. 

Anyway, I am raw, whole, vulnerable, flying, healing, hopeful, clear, and uncertain all at once. I hope your Sundays are going well too.

April 10

Well… Poop. I saw the x-ray and met with Sarah’s GI doctor. Holy sh*t. We have a serious backup. Sometimes Carl and I have different opinions about the same situation. I was busy feeling like a failure for Sarah’s current situation. When I told Carl about the x-ray and the plan he was excited that now we know what is going on and have a clear plan of treatment. He was thinking I was amazing for getting us to this moment. Sometimes it is best to listen to one’s spouse.

Yesterday Sarah got hurt a little bit on her lip when she tripped.  She was crying a lot for a long time. She eventually regained equilibrium when I started talking about past times she had gotten hurt, which she loves to discuss. She then said, “Sarah pretending to be Sarah getting hurt” and went into her usual dramatic and joyful description of going thump, thump, thump down the stairs. This was the first time she said she was pretending to be herself. 

I knew I had a habit of pressing my tongue to the roof of my mouth and also of tightening the muscle around my right eye. As I continue to diligently unwork, through Alexander’s constructive rest, I have become increasingly aware of just how often these habits come into play. ALL. THE. TIME. I mean, all the time!! All of it. This is quite an exciting and an empowering realization because it is something I actually can control if I put in the time, awareness, and patience. I do not know if this is the root of my headaches but I believe it is strongly related. I had one more session with my new MT who combines myofascial release with neuromuscular work and it was again an amazing experience. I feel continued hope in our team work to undo this cage I have built around my head. I know the theory of myofascial release and I have felt the connective tissue releasing in my clients and I have received work from some highly skilled amazing therapists. That said, this last session was the first time I have really really really felt it melting in me. AMAZING. If I was not already a massage therapist and bodyworker then I would be deciding to become one now. I have also been exchanging with one of my office-mates. What I appreciate about both of these MTs is how present they are when they are working with me. I can tell they are paying close attention to unraveling the puzzle. They inspire me to really make sure I am fully present when I give massages to others. I could even expand that to when I am with my kids if I wanted to get really bold and crazy! :) I have to undo a lot of my knee-jerk reactions to some of their behaviors. I love this idea and I actually work on it a lot. But for now I will keep the main focus on my muscles, because that is really a doorway into all of the rest of everything anyway. I see right now, as I write, that I don’t have to know the answer of how I do want to respond to my kids, the first step is just not to do my habit.

When F.M. Alexander was unraveling his habits, he determined that he would maintain his good use (of his whole self) and speak (which is when his bad habits happened) or maintain his good use and not speak or maintain his good use and do something else. He would not let himself go back into his habits to achieve any end goal. I am keeping this in mind as I go through my days, seeing the to-do list, the mess, etc. My primary to-do item is actually an undo item. And that has to come before all else. I will undo the tension around my eyes and tongue and I will clean or not clean or do something else but I will not tighten. Or I will un-tighten as often as I notice tightening.  The really fascinating moments are when I do lose my awareness and then regain it, wondering for how long I was jamming my tongue to the roof of my mouth. Seconds, minutes, hours? 

I hope you are all clear and easy in your intestines, thinking, and muscles.

April 3

This week was a good clothing week. Grammy and Granddad sent some new clothes in the mail and the girls were squealing with delight as they shucked their old garments and donned the new. They started saying “look at me! look at me!” and then Sarah said, “Look at us!” Those tiny shifts in speech (especially pronouns) come so easily to so many but not Sarah, so it is really huge when she makes a shift on her own.

Sarah was outgrowing some of her pants so I took a chance and bought her some jeggings (jean leggings). She loves them! She has loved jeans for ages, but only when they were on other people. She wore them to school on Thursday and had a great day, the best day she has had at school in ages. We don’t know if it was the jeans that led to the extra good day or because I was outside the room the whole time (that was the needed security blanket to have her agree to try school). All week she had Sonia or me outside the room and we may need to continue in that fashion. She is doing great, but protests going unless we offer the option of being there. Friday was a good day too and also included jeans.

For the nitty gritty details and in case the information helps anyone else with their struggles, we got an x-ray of Sarah’s abdomen and confirmed my suspicion that she is in fact quite backed up. We are starting a temporary regimen of Miralax plus continuing increased fruits, veggies, and water. I also realized that for months now I have been wanting to keep my head in the sand and not give up any food items that I had long ago deemed ok. Yet, clearly things have not been ok (for either kid’s digestion) and so I had to face that and make changes. We are phasing out the rice bread that I had thought was ok. We are not going to have bananas around any more. No more orange juice (to cut back on the sugars ingested each day). I may phase out Beanitos at a later date if need be. I came to my realizations while grocery shopping and it took effort not to cry in the store. Sarah’s food is so limited anyway that I hated going back to even more limitations, even though she often handles it with more ease than I do. It is also different to limit Amy’s food more, but she seems ok after the initial disappointment. We will see how she does once the rice bread is actually all gone. When I initially eliminate a food option it has to be completely out of the house. It is too hard for me to say no if it is in the house. Decreased options also mean more work on my part because I have to make even more things from scratch. And did I mention that Sarah’s favorite veggie crackers are no longer being made??! I have a variation that she is now ok with and I have enough boxes to last for a few months, but after that I will have to experiment with making my own.

Yesterday our neighbor gave us an enormous cardboard box and Carl made a bus out of it. Sarah the Pigeon was very excited to drive the bus! 

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.