November 12

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

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

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

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

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

November 5

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

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

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

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

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

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

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

October 29

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

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

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

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

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

Love to you all.

October 22

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

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

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

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

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

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

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

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

I hope you are all well.

October 15

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

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

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

Indeed. So wonderful.

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

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

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

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

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

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

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

October 8

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

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

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

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

May you see yourself through my eyes.

October 1

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

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

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

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

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