May 29: It's Been a While

“Mama, is it an alligator or a crocodile?”

“Well, that depends… when are you going to see it next?”

…pause… Sarah smiles as she gets the joke and belts out, “After a while!”

I have started telling Sarah, “I’ll see you after a while” when she gets on the bus. When she comes home I greet her with, “it’s been a while, crocodile!” So now her favorite thing to do when we snuggle is to trade repetitions of “it’s been a while, crocodile.” Sometimes she asks me why I said that when she came home. I explain that it had, in fact, been a while. On a normal day it is 8 hours between when she leaves in the morning and when she gets home. I also tell Sarah goodbye with “See you soon, Goodnight Moon” and I’m trying to think of parting phrases that might rhyme with “musical note” or “panda.” If you have any inspiration, please share it.

This past Monday I was teaching in the afternoon so Anna met Sarah’s bus and took the kids to swimming. Normally Sarah is fine with such an arrangement, but on Monday she was missing me and crying a lot. I appreciated that Anna let me know about Sarah’s feelings before they got back. The advanced notice allowed me to prep dinner and make school lunches before they got back from swimming, so when Sarah walked in full of tears and needing to snuggle, I didn’t have anything else I needed to be doing.

Sarah is in the final count-down as a seventh grader. She has 6 days of school remaining, but the last day has dismissal at 10am so it barely counts. On Thursday Sarah felt sick at school with too much phlegm and a headache. This happens regularly enough that her teacher doesn’t always call me right away, but tries to help Sarah get through it because then she is usually fine. On Thursday the usual tactics weren’t working so I was called. I was in the middle of teaching so I didn’t want to leave. I checked with my in-laws and they were available, but I also suggested giving Sarah ten minutes with an iPad. Evidently that did the trick of shifting her attention long enough that she reached equilibrium and didn’t need to come home early. I’m so grateful for Sarah’s teacher being calm and flexible in the face of Sarah’s routine bouts of not feeling well.

Sarah’s love of crocodiles has meant that she now wants to read all of our books that feature crocodiles. She remembered that Little Fox Goes To The End of The World by Ann Tompert has crocodiles and she found it on our shelves. I unfortunately remembered that there is a poem about a crocodile in Play Rhymes by Marc Brown, which we gave away months ago. This is not a book you can just buy new, but luckily I was able to order a used copy, and Sarah is thrilled to have it.

Amy’s fifth grade year is also winding to a close but she has more days than Sarah until she is done so she still has plenty of homework. I can see that my challenge going forward is to guide her and nudge her but not take too much responsibility for her doing her work because then I get frustrated and upset when she gets distracted by texting her BFF or playing on her iPod or who knows what else. I also need to become more comfortable with the idea that she might be late to school one morning because she is taking longer to get ready because who knows why. It has always been important to me to be on time and have my work done ahead of time, so it’s hard to realize that not everyone is quite as driven to achieve such things as I am. I need to let go and let Amy be herself. I know she also likes being on time and having her work done, but maybe doesn’t yet realize how to fully take ownership over the steps required to reach those goals. And how would she if I have always been the one driving things? 

Last night Amy and Carl had a misunderstanding regarding bedtime and when Carl would read to Amy. They each were frustrated and Amy went to her room in tears after being unable to articulate why she was upset. Carl followed a few minutes later and it warmed my heart to hear them talking through the whole thing. Carl led beautifully by explaining how he had interpreted things and how he would have done things differently if they could have a redo. By then Amy had regained her calm and was able to share her side of things. It was so respectful and loving on both sides, with neither side assigning blame. Then they ended up having their usual nice time together with Carl reading out loud while Amy got ready for bed.

I did two one-hour massages (on separate days) for the first time since before my surgery and they went well! I think I still need to be conservative and not do more than two per week for a while, but it felt great to be working again. So if you are a client of mine, we can now look at our calendars, knowing that it may take a while to match up given how few massages I will do per week and that we are about to hit the summer, which means slightly less constant childcare than when the kids are in school. For the evening that I was out working, Carl reported that Sarah initiated unloading the dishwasher and proceeded to do all of it by herself, even using a stool to reach shelves that were too high. My jaw could not have dropped further as I learned this news. 

May 22: Long Walks, Dancing, and a Moment on the Road

We have had a full and wonderful week. Last Sunday Carl and Amy went on a long bike ride with a bakery stop to refuel. That afternoon Sarah had her spring piano recital for which she wore her musical-note-print sundress. I got the dress for her a year and a half ago, at her request, but this was her first time wearing it. 

My head and hip continue to be in good shape, although it is ever the humbling journey with my hip. On Tuesday Carl and I walked to vote, which made for my longest walk post-surgery. It was a little over a mile round trip. I felt good but was definitely slower on the walk home. A couple of hours later Amy and I walked to a bakery that is not far (slightly less than a mile round trip) from our house. Apparently though, those two walks were a bit too much for me so that evening I was toast. It took me until Thursday evening before my right leg felt normal again. I was even needing my cane around the house, which I usually don’t need these days. 

Amy, ever the artist, created a “hairdo” out of a long black skirt on her head and multiple scrunchies and colorful cloth headbands. 

Sarah had a field trip on a river boat on Tuesday. She likes to pretend there were crocodiles in the river. Amy had no school on Tuesday because her school is a polling place, and then she had a field trip on Thursday. The week felt unusual to begin with, and then Friday neither child attended school because we were driving to Philadelphia for a Bat Mitzvah. The Bat Mitzvah was yesterday and was wonderful. The service was beautiful and meaningful and an energetic celebration of life. Our kids (and all of the many kids there) did remarkably well given that the service was 2 1/2 hours long. After that we had a fun time at a picnic and a dinner. Sarah and Amy really loved the dancing. I expect they may nap on the drive home. 

Today for the beginning of our drive there was a moment that feels symbolic of the difference between Carl and me. Carl was driving and needed to get over one lane on the highway. It was busy and difficult to merge. Cars weren’t letting us over. Carl quietly and sweetly said, “come on, friend.” At that point I cracked up, knowing that if I had been driving in that moment I would have loudly growled to the people not letting me in, “thanks Piggy Hoggy!”

Anyway, sweet friends, I do thank you for reading. None of you are Piggy Hoggies. 

May 15: Crocodiles, Bikes, and Gratitude for Bears

Last Sunday was a wonderful, relaxing Mother’s day that included hanging out with Grandma and Grandpa. Sarah delighted in showing them the short clips that I recorded from her Peter Pan Jr. dress rehearsal. Then Sarah, Amy, and Carl acted out a small scene involving the crocodile (Sarah), Tinkerbell (Amy), and Captain Hook (Carl). I’m not sure that that particular scene ever happened in the play, but it happened in our backyard! Then they all sang “I won’t grow up” with Grandma. The girls gave me lovely Mother’s Day cards and Carl gave me a card that included a hip that he made out of a marble and construction paper, wishing me a Hippy Mother’s Day.

My hip is progressing well, to the point where I hardly ever use the cane around the house anymore. That doesn’t mean my gait is always smooth, but I’m definitely stronger and more capable than I was even a week ago. My speed and endurance still have a ways to go. I walked to an intersection that used to be maybe 5 minutes away if I was at my full, easy speed. The round trip took me half an hour and I needed to stop twice to rest. 

My headaches haven’t completely gone away, but are much less intense and less frequent. I am still hopeful that this marks the end of the cluster, but each time I have a headache I worry that I’m not yet in the clear. I remind myself that clusters always slowly ebb on their way out. It’s never just an instant clear stop. 

While Sarah was using her imagination to pretend that her panda nightgown was a hospital gown covered in crocodiles, I ordered a pair of crocodile-print pajamas for her. I didn’t tell her I had done so because she has a really hard time waiting for something if she knows it is coming. When the pajamas arrived she was thrilled and now wears them around the house at all times. Her favorite pretend scenarios are either that she is Mr _____  taking the elevator to the fifth floor of the hospital to give birth to Baby Crockie or that she is Mr. ______ bringing the crocodile costume for Peter Pan Jr to the gym to show the cast members. She pretends that the costume is heavy and so wide that she has to open both gym doors to make room.

Carl has been taking Sarah out almost daily for fifteen minutes on her bike. She is getting ever more adept at balancing as she coasts and for a few brief seconds has pedaled without Carl holding her steady. We are hoping this will be the summer she learns to ride independently and then our whole family could go for a bike ride, assuming I still remember how! It has been forever since I rode a bike outside of the stationary holder in our living room. I have been riding my stationary set-up for 7 minute spurts a few times this past week, since my PT says that is one of the best things I can do to help my hip.

Amy and I assessed her homework demands for reading and math for the week, portioning out what she wanted to do each day, and she has met her goal each day. That definitely helps the weekend feel less like it is dominated by homework. That meant there was time yesterday for Amy and me to go to a few yard sales for the big neighborhood yard sale day. We didn’t go far because I still am rather slow to move down a sidewalk and don’t have the endurance I used to. Carl then took the kids to the Pittonkatonk music festival. Sarah was glad they had a bubble machine as they had 3 years ago.

The part of the week that has really given me pause was learning that Barry Neil Kaufman (affectionately known as Bears), the original Son-Rise dad, has advanced cancer and has a prognosis of days to live. Bears has been an extremely influential part of my life since 1997 when I attended an eight-week program at the Option Institute, which is connected to the Autism Treatment Center of America where they teach people to run Son-Rise Programs. Then in 2011 I was back learning to create our Sarah-Rise Program, and completed that training with two more weeks in 2012. I’ve read many books by Bears and had Option Process dialogues where he asked me questions to help me figure out my own wisdom and be free from some beliefs that maybe didn’t serve me. Notably, he asked me why, if I didn’t get what I wanted re Sarah would that be so painful for me. I have been asking myself similar questions lately as I notice how often I get grumpy when things don’t go how I want them to go. I do not always have the answer. In fact, I rarely do. But asking the question points out that maybe there is an option not to be grumpy. Over the years I have often felt mad about how Bears seemed to think it was so easy to be happy. I was expecting myself to be able to just instantly be happy all the time because if it was possible then I should do it. Now I realize that what Bears has really been advocating is radical self-acceptance and love so that I don’t run from my feelings but can sit with them and understand them better. The day I learned that he was dying I barely cried at all. That night I had a long-lasting headache. In the morning I realized that I probably needed a good cry because I probably had feelings that I didn’t want to feel. So now I’ve been feeling all of the sadness about how this integral part of my life will no longer be in the world in the same way as he has been. I’ve also been feeling deep gratitude for how much Bears and Son-Rise did for me and for Sarah and our whole family. I feel like it saved us, giving us a powerful path of play and love as our way of helping Sarah, as opposed to just fear and stress. 

Carl and I watched a documentary called Let Me Be Me, which you can stream on Apple Plus tv or Amazon Prime. It is about a family who ran a Son-Rise program and about the child as a grown-up learning to be a fashion designer. It was incredibly powerful and moving to watch. I highly recommend it especially if you want a window into what our life was like in the days of full-time Sarah-Rise. Certainly some aspects are different, but the feel is very much the same. As I watched, I marveled at what a huge undertaking it was for that family and then realized….wait! We did that too! Holy crap! That was a huge deal! Not that I ever have doubted that it was a huge deal, but still, this helped me appreciate what we did. It also had me feeling teary because William Hogan is in the documentary and he was another beloved teacher who died from cancer. Bears is in the documentary, and that had me teary too. 

Lots of love to you. May you have space to look your feelings in the eye and let them have a tissue if they need one.

May 8: Headaches, Hips, and Panda-Crocodiles

How many clusters of headaches will it take for me to learn…? The answer may be 26 years worth of episodic clusters. I hope this time I have actually learned, but please remind me in the future if you see me once again thinking that “this time I can get the headaches to go away… this time they are mild…” No. The clusters always start mildly and I always try new ways of dealing with them in that mild state and those methods work, thus making me think I have some new secret. Nope. If I have figured out anything about changes to make in my lifestyle, breathing exercises, yawning, relaxing, crying, writing, yoga, etc those are only the means to hopefully avoid the start of a cluster in the first place. If a cluster starts, no matter how small the initial headaches are, I need to take immediate action to get nerve block injections and prednisone to stop the cluster. I need to stop thinking I can solve it any other way. As the clusters progress they always become so intense in the middle of the night that I cannot use any of my tricks or function in any way. So please remind me when I forget this again. 

As you may have surmised, my cluster this time got really bad. I was on a round of prednisone which helped while I was waiting for a long time for an appointment for a nerve block injection. As soon as I started weaning off of the prednisone, the headaches became the worst of this cluster, meaning that Carl once again woke to hear me sobbing downstairs and nearly going out of my mind, and even all of his tricks of rubbing my back and neck didn’t work right away. Luckily, my headache doctor set me up with a second round of prednisone and was able to squeeze me in for a nerve block on Friday morning. What I cannot fathom is why it takes so long to get an appointment for a nerve block when the actual procedure literally takes 2 minutes. Two minutes! Minutes that will save me hours of agony. What the $%@)(#R%&???? That should be an appointment that can be scheduled immediately with any doctor on staff any day. Apparently though it has to be with my doctor or their assistant. Why?!! Anyway, I will try not to dwell further on my incredulity and frustration and just be grateful that I hope I have the reprieve I sought. Only time will tell as I wean off of the prednisone again. For the future I will not wait until things are excruciating. Although in my defense. I didn’t wait this time. I tried. I emailed and I called when things were mild and was told I had to wait (first because I had a cold and second because they were booked) and I only seemed to get in when I pushed harder about how bad the headaches were. I had even reached out before my hip surgery because I knew it might trigger a cluster. So I do think I did my best and next time I just need to push harder if I don’t get the answer I want. I never ever want to be in such pain again. So I need to push hard for remedies when the pain is mild, as if it is already the emergency it is certain to become. 

Aside from all of that… my hip is progressing well. I have now put a sock on my right foot once without needing my special tool. I walked to the mailbox with my cane and I got groceries. I wore jeans for the first time since the surgery. I do much more in the house without a cane. I can kneel on the floor. I can get down onto the floor and get up again without worrying that I will be stuck! My PT sessions are going well and I even coached my PT on how to use his hands and body differently so his work on my adductors didn’t tickle me. He needed to soften his hands, make contact without pressure, and then rock from his ankles to apply the pressure. Then the work was easily much more effective. I was pleased that he was open to my suggestions. 

For Sarah’s seasonal allergies we tried switching to Zyrtec for a few days starting about a week ago, but then we felt like her hearing was compromised. That doesn’t really make sense as a side effect unless it was something about how effectively it took care of her congestion. Anyway, we switched back to Claritin and noticed that her appetite seemed much curtailed, probably again due to phlegm, but now her hearing is back to her normal. So maybe it is all about where the different medications most effectively clear the mucus. I don’t know. I asked Sarah which she preferred and she said Claritin. Her appetite seems mostly normal again. Friday night I was concerned that she wasn’t eating enough and then she proceeded to eat 6 meatballs! So I guess she was feeling ok. 

Amy had an intense week of school work, with lots of reading for her school book club plus needing to work on her creation of a board game for math class. She pushed harder than usual, needing to work in the morning before school and skipping watching any tv after school. She made it and was pleased with her creation. Now we are practicing mapping things out a bit more ahead of time to make sure things don’t get so intense in the future, if possible. 

Last night Carl’s parents came to be with the kids so Carl and I went to dinner and a movie. As often happens when we go out, I marveled at how many other people were out on a Saturday night. We go out so rarely that I forget how many people go out on the weekends. 

I am pondering how to schedule my life as I am able to add more things back to the mix. It feels similar to the questions people asked of themselves as the full covid-shutdown abated. What do I want my days and weeks to be like? As with previous evaluations, this feels hard. I want to do all of the things that I did before but I also want to have time to read and have a more relaxed pace to my days. These things are not necessarily compatible. So I’m still thinking. I am also reminding myself that I’m still slower with any given thing than I used to be, so as I continue to heal I may actually just have more time. My trip to the mailbox took twice as long as it used to and I’m guessing my grocery trip was also less efficient. Which is all ok. I just sometimes forget that I’m not up to full speed because I’m so much more capable than I was a month or two ago. 

Sarah’s love of crocodiles continues in full force. Her main thing this week was to wear a nightgown that you might mistakenly think was covered with pandas. Actually they are crocodiles and all of them are doing or feeling different things. Some are sad, mad, happy, and confused. Others are playing sports. I also got her a crocodile ring, and Amy and I got her a book called Investigators at Amy’s school book fair. We figured alligators were close enough to crocodiles, and Sarah did read some of the book with Amy yesterday.

If life gives you pandas, may you be able to make whatever crocodiles you need from them.

May 1: Fairy Wings, Allergies, Hips, and Headaches

I started going to a physical therapist this week and starting next week I will go thrice weekly for the month of May. The most helpful part of my first session was having the therapist tell me I didn’t need to be scared of my hip and new hardware breaking so I could expand my range of attempted movements. He encouraged me to start going for walks and to practice short distances without a cane when I’m at home. I haven’t yet gone out for a walk just to go for a walk, but I have started going on more errands and parking farther away instead of trying to get the closest spot. When I’m in the kitchen I often leave my cane dormant, and it is so nice to be able to carry things in two hands. Whenever I start lurching around as I did before my hip surgery then I know it’s time to get the cane again. The good problem that I sometimes now have is forgetting where I left my cane if I have done a few things without it. One day I noticed I accidentally came down a couple of steps normally, as in bending my right knee. Then I realized I could do the whole flight of stairs that way, with each leg taking a normal turn, while holding support on each side with my hands. Then I realized I could go up stairs in a similarly normal way. My outside steps are too high and if I’m tired or haven’t been moving around enough to be limber then I can’t, but still. This was super exciting and halves my time for using stairs. 

Carl has been biking and playing basketball to help prepare for some bike races in the summer and fall. He also helped get my bike into the Kickr Snap stand that Sarah used to use for Zwift biking (but hasn’t in a while). I managed a minute of very gentle biking. Then I had to call for Carl to help me because I couldn’t figure out how to get down! It was a very strange feeling to be stuck. I didn’t actually need him to lift me off the bike. I just needed him to help me think through a different strategy for dismounting. As with all new movements and abilities lately, this was exciting and humbling in equal measure.

My headaches unfortunately did what they always do and have me questioning if everything that seemed to work in the past few weeks was just due to the headaches being mild. I think I go through this every cluster, where my confidence in my new abilities to calm the beast is high at the start and then the headaches ramp up in pain to such a degree that none of the previously effective coping strategies work. Twice I tried the nasal spray that sometimes can stop a headache and neither time did it seem to work, aside from giving me a sore throat from the chemicals going up my nose and down to my throat. Carl woke to hear me crying and was able to rub my back until I could settle and the headache could abate. The second night I just woke him directly to ask for help. I don’t know how I would manage without his help. When I had reached out to my headache doctor a couple of weeks ago she said I couldn’t get the nerve block injections when I had a cold. I wish she had suggested that I call to make an appointment though! I now do have an appointment but for May 17. In the meantime I started prednisone yesterday and last night I did have a headache-free night. I woke often and had the sense that I barely slept, but I know I must have slept. 

Amy has been focused on fairies all week, her love of sprites possibly rekindled by seeing Tinker Bell in Sarah’s production of Peter Pan, Jr. What this means is that whenever Amy is at home she probably has wings, whether she is doing homework to make a math board game featuring fairies, or just coming to have a meal. For Friday, though, she was not a fairy. She and one of her best friends spent hours on Thursday planning and exchanging items of clothing to set up their identity swap on Friday. Amy wore her friend’s clothes and backpack and shoes and cloak, while her friend wore Amy’s corresponding items. The challenge for such an exchange is that Amy is several inches taller than her friend and wears the next size up in clothing and shoes. I think that is what took so long in the preparations because they had to find just the right clothing pieces to trade. Then again, each meeting to swap things also turned into play and races down the sidewalk. 

Last weekend when Sarah was sick she basically didn’t eat for two days aside from gatorade and applesauce. She stayed home on Monday for an extra day of rest. All week she ate much less than usual to the extent where I had to take in her adjustable waistband on Friday morning because her pants were so loose. This freaked me out a bit and reminded me of the very early years of stress about her lack of gaining weight. However, this weekend her appetite seems back to normal so maybe her system has finally beat whatever bug she had. We are also trying a different allergy medicine for her seasonal allergies. We used to do Claritin but her doctor said Zyrtec would be stronger. I double checked with her neurologist to make sure it was ok with regard to seizures because things such as Benadryl and Sudafed lower the seizure threshold. Zyrtec is approved but maybe sometimes makes her more tired. I’m not sure if it is helping her excess phlegm situation, but maybe it is. I’m also working to increase her water intake, since that will help everything work better. 

We are having a wonderful weekend visit with Grammy and Granddad. Sarah is sharing her love of the Turning Red movie with Grammy, and yesterday I showed the short clips I recorded from Sarah’s Peter Pan Jr dress rehearsal. Amy, Grammy, Granddad, and Carl played a game yesterday that was similar to Dungeons and Dragons. My favorite part was overhearing the dismay about a particular direction when Granddad commented, “That stinks out loud.” I think I may borrow that phrase.

Amy has delighted in some new coloring materials and an Exploding Kittens puzzle furnished by Grammy, just as Sarah was thrilled by the gift of a crocodile puppet backpack that Grammy happened to find at a rest stop on the way to see us. Carl delighted in the gift of Fritos and I received a wonderful book called The Rodent Not Taken by Jennifer McCartney. It is an adaptation of famous poems as if they were written by cats. For one poem I was directed to wear a beret and snap as I read it. Lacking a beret, I put my napkin on my head, and Carl captured a picture of me being very serious while wearing a napkin on my head, as one does. As always, the visit feels too short and we wish it was longer.

Wishing you crocodiles, fairy wings, and napkin berets when you need them.