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.

April 24: Easter, Teaching, and Peter Pan Jr

Last Sunday the kids had an Easter egg and jelly bean hunt upon our arrival home after our time in Florida. Amy then made color-coded hunts for the rest of us to complete throughout the week. There is still a bright pink plastic egg hiding in Sarah’s bright pink shoe, waiting for her to notice it. We also had two real bunnies in our yard, taking shelter from the rain and snow of the week.

I tried driving my car and that didn’t feel good for my hip, which was discouraging. Luckily, my in-laws didn’t need their van this week so I was able to drive that since the angle for my hip is more comfortable. It was definitely liberating to be able to go places on my own. I took Sarah to one of her dress-rehearsals and took myself to teach my first class since surgery. It was an Alexander Technique class focused on breathing. I was so glad it wasn’t the class that I designated to be about walking! The class went well but was definitely pushing my edge. I thought it would be easier on me than it was to stand and work with people for a short time. I could even take tiny baby steps (without a cane) to shift my angle, but after working with a few people I realized my right toes were feeling tingly and I needed to take a break. I also helped a couple of people with how they worked while giving a massage. It was definitely challenging and I couldn’t work the way I’m used to working. Being able to teach and having it be easy are two different things! This week I begin teaching regularly again so I will just aim to have as much rest time around that as possible.

I had my one-month post-surgery appointments with my PCP and my surgeon. All seems to be healing well and the x-rays looked good. I start PT on Tuesday. I will say this whole process has been more emotionally challenging than I imagined, though in retrospect that makes sense. It is hard to have things be hard and to still need help and to be slow at moving. I feel overwhelmed often as I try to add in small pieces of normal life. Also, since I had a cold I’m not permitted to get injections in my head for my headaches until more time has passed. I am now on the fence about the injections. The headaches are awful and my sleep has not been great, but I’ve had several times where I was able to have a good cry that I didn’t know I needed or take big relaxing yawns while listening to Wyndham Hill’s Autumn Portrait (or watching the dvd) and that has cleared a headache in short order. At other times I was less successful. But I’d like to give myself a bit more time to maybe resolve things on my own, so perhaps it is ok that my doctor wants me to wait.

Sarah had an intense week of dress-rehearsals for Peter Pan, Jr. She had energy and happily managed her whole week with grace and poise. Friday night’s performance was wonderful. And… as I had either feared or intuited via premonition, she got sick yesterday and was not able to attend her final performance. She didn’t have any individual lines so this didn’t impact the show, but it was too bad because she loved being a part of it. Her whole participation and performance felt like a culmination of all of our collective Sarah-Rise time, effort, and ambition. She performed in a show! She sang songs and did coordinated movements with a whole group of people. She did all that she needed to do and never distracted or interrupted things in any way. The only hiccup sometimes was needing to exit the stage more speedily. Overall, what a phenomenal achievement, including so much time just patiently waiting for when it was her time to participate. I simply could not be more impressed or proud of her. One of the best moments was during dress rehearsal on Thursday after a scene in which she helped bring a pillow to Wendy when the Lost Kids built a house around Wendy. Sarah exited while holding her hands above her head to indicate a house. That was so perfectly Sarah-ish and perfectly timed with the moment in the play. 

Amy had a zoom yesterday and snuggled next to our cat for most of it, with Olivia’s head on her shoulder. That went well and Amy even regrouped well after having huge feelings of upset when she learned that Sarah was sick and couldn’t attend the show. We had originally planned that Anna would come to hang out with Amy that night since they watched the show Friday night. So Amy had big plans and was very upset that they couldn’t happen. She rallied though and Carl became his overly-confident and underly-capable character Joey for participating in the Fairy Olympics that Amy had designed. I’m pretty sure Amy won.

Sarah spent most of yesterday sleeping and she is sleeping now. Any healing energy you can send her way is most welcome.

April 17: A week in Florida

We are coming home to a chilly Pittsburgh after a wonderful warm week in St. Petersburg, FL. We bought the tickets and made our reservations before knowing that I would need hip surgery. Luckily I had enough recovery time so my doctor said it would be ok to fly. We arranged to have a wheelchair in the airport. Sarah even pushed me for a few feet. While I can walk with a cane, the amount of walking needed in an airport is, well, staggering. I was grateful for the wheelchair and the priority boarding for those who move slowly. 

When at home I was aware of how much more capable and stable I was. Being in a new place with sand pointed out how incapable and unstable I still am. I knew I couldn’t be immersed in water but I somehow thought I could still get my feet wet. Nope. I didn’t feel at all stable enough even with support to get close to the ocean water or to lower myself to the pool edge. 

Our daily routine was something like this… wake up, have breakfast, maybe nap, kids watch their shows, swimsuits and sunblock and packing a wagon that came with the rental with beach gear. Take the elevator down to the parking lot and walk several feet to the beach. Really, our place was right on the beach and the strip of sand was narrow so I could still have a front row view of the water even though I only walked maybe 10 feet in the sand, holding Carl’s hand for support (along with my cane). Carl would stabilize the beach chair while I lowered myself into it. Amy did a ton of time floating on the boogie board and swimming. Sarah played in the sand and sometimes got her toes wet or chased birds. 

Next Carl would drive us two minutes down the road and let the kids and me out at a restaurant. Then he would go park at our rental and walk ten minutes along the beach to meet us. Then he walked back, got the car, and drove to pick us up for more beach time. Then into the car for ice cream at our favorite place called Ice & Cream. Then back for time at the pool. I stayed in the pool area while Carl packed up the beach gear into the wagon, then he took over with the kids at the pool and I went up to our rental condo unit. I could be eyeballs and a voice in terms of parenting lifeguard duty, but I couldn’t really be a functional adult. There were no seats by the pool and though we could have set one up, there was no shade and it was quite hot. So it wasn’t comfortable for me to hang out for long there. I slowly went up to our rental and rested on the sofa while reading. Then we had dinner at our place and watched Pets United or short sections of the Paddington movie. Then bed. 

On our final day we even got to see Carl’s cousin and extended family who all happened to be vacationing near us! 

Sarah’s favorite themes of the week were to talk about Mr_____ and his watch that she liked to look at and touch while waiting for her turn to go onstage. Apparently this teacher also brought a crocodile puppet to the Peter Pan Jr rehearsal, so Sarah was all about crocodiles. She wanted me to guess what Mr ____ brought to rehearsal so I started guessing other animals first. Amy started helping me expand my animal repertoire so keep things interesting, always coming back to crocodiles after one or four other animals. Carl bought a boogie board with a crocodile on it that we intended to leave at the rental but realized we needed to bring home because Sarah loves it so much. Luckily it fit (just) in our suitcase. 

Sarah also continues her love of Turning Red and pretending to be the giant red panda. Last week she liked pretending to get upset and poof into the panda. This week she likes to be the panda calming herself and being zen. 

To add to the challenges of the week, Carl basically had to pull an all-nighter for work right before we left and then it was a long day of travel. So he was grateful for naps. Unfortunately the kids had mild colds before we left and then Carl got a cold and then I did too. My cluster headaches have also started again. Still mild for now but I probably need to go get injections into my head. I knew this was quite likely because triggers for a cluster include prolonged stress, messed up sleep, and taking Tylenol more than three times in a week, all of which happened in spades with my surgery. Still, it felt quite unfair to have my hip still healing and headaches and a cold. That said, we did have a great time. Our rental was the best scenario possible given my status because I didn’t have to navigate in the sand much at all and could mostly be a part of things. Carl took care of everything for all of us when needed. 

And I arranged for some helper Easter bunnies to get things ready so the kids can have an egg hunt when we get home. 

April 10: Canes, Capability, and Sometimes Overdoing it

Last Sunday evening Sarah was rapidly oscillating between telling us all of her ailments and happily running around pretending to be the big red panda from Turning Red. We tried to ascertain if there was anything she was stressed about regarding Monday, but we weren’t able to get any information that felt current. She did go to school on Monday and handled her extra long days with rehearsals beautifully. On Monday rehearsal went long and then some parents talked with the teacher afterwards, meaning Sarah got home in time to hand me her backpack and get in Anna’s car to go to her swim lesson! 

Mr. _____ came to a rehearsal one day and clearly it made a big impression on Sarah. She talks about him often and wants to pretend to be him as he conducts. Her version of this is to wave at us and say, “All right! Listen up, Lost Kids!” That’s as far as it goes. Last night she sent me texts of “Sarah” and “Dad.” I wrote back, “Yes, Mr. ____?” She thought that was hilarious. She also likes to re-enact a scene from Turning Red between the mom and the kid, so the rest of us are often pretending to poof into big red pandas. Luckily these two routines give us some respite from Sarah wanting to talk about the no-longer-used nickel chart. 

We have learned that we need to give Sarah Claritin even if nothing presents outwardly regarding her seasonal allergies. She used to get itchy eyes and a runny nose. Now it all just invisibly goes down her throat and gives her a cough and too much phlegm. Her doctor said that is common and it does seem that daily Claritin has helped. 

Amy had a good week and is now on spring break. Sarah’s spring break starts later this week. Carl had a super intense busy week so it has been helpful that I’m more capable of helping around the house. My recovery continues but not always in a linear fashion. It seems that as I get stronger then it is easy to overdo it without knowing I’m overdoing it until it is too late. Then I pay for it with an extra-achy night and needing to rest a lot the next day. Some nights had so much achiness and pain that I thought something was wrong, and yet once I was up and moving around for a couple of gentle hours then I felt back to my normal level of slight stiffness and discomfort. There are times that I feel quite disheartened and sad and other times I feel hopeful and can see how I will eventually be on the other side of all of this. I hardly ever need to use my walker anymore, which is great because I have calluses on my hands from using it so much. There were some advantages to it though because if I just use the cane then I have to make many more trips in the kitchen since I don’t have my walker basket in which to pile many things. I have taken a couple teeny tiny baby steps without any support, but I can tell I’m not really ready for that yet. I tried sitting in my car and driving forward a few inches and then back. That was enough to tell me I am not quite ready to drive. Mainly it is not comfortable to sit in the seat. Sitting with my hips at right angles is often a bit uncomfortable. Or it if is comfortable then the discomfort comes when I stand up, and I need to just stand for a few moments before I’m able to walk. There is usually a moment in every day when I reach my limit and don’t want to walk anymore for anything. Luckily this usually coincides with Carl being available to finish whatever needs to be done.

I have read many books. I have ventured outside to sit on our porch swing for short bits of time when it was warm enough (and not hailing as it did yesterday!) I also got a new dishtowel about wearing a crown made of the femurs of one’s vanquished enemies. I love the concept and yet it really makes no sense. Femurs are way too big and heavy. Or would this be a crown made just of the parts removed during hip replacements? I still think that would be too heavy, but crowns aren’t known for being light. 

Our cat is often super helpful, positioning herself on the stairs and rolling around so I can’t get past. She has always done this but when I was fully functional I would just take a huge step to get over her. Now I need someone else to find a toy to throw so she will move. 

Last night Amy decided to dress up like me. She put on the paper tiara she made for me before my surgery. Then she wore one of my t-shirts and put her hair up in one of my hair clips. She donned my fuzzy blue bathrobe that I often wear on top of my clothes to be warm, grabbed one of my stuffed animals from my bookshelf, and held my cane. It was hilarious and she was cracking herself up too. Note that she couldn’t wear my ubiquitous orangish sweatpants that are seen in almost all pictures of me lately. I bought them just for this recovery time and thank goodness I did. It is not comfortable to have anything pressing against my leg, so wide-leg sweatpants it is!

Sending you all lots of love for whatever part of your journeys you are navigating.

April 3: Huge Baby Steps and an Indoor Beach

My independence is slowly but steadily growing. The biggest achievements of the week include taking a few teeny tiny baby steps using only a cane for support, getting outside and onto my front porch swing all by myself, and carrying a plate for a short distance while using only one hand on my walker! It is fascinating to me how these things can simultaneously be such huge achievements and show how low the bar is. I have realized what a powerhouse I was prior to surgery and I cannot quite contemplate how I will ever get back to the sheer magnitude of things I did in a day. I can sort of see that I will get back to being able to manage all of the home and kid stuff I did before. I’m back to making the kids’ school lunches every day and helping with breakfast preparations. I can sort of see that I will be back to teaching by the end of the month out of necessity (unless I really can’t), but just for Alexander Technique teaching or massage with vastly altered body mechanics. What I can’t see is how I will be able to get to my office with a huge bag of sheets and give a massage. Baby steps. I know. A week ago I couldn’t have imagined using a cane or carrying a plate. So I trust that I will get there, but it is ever humbling to be where I am now.

Sarah is in her school’s musical Peter Pan, Jr, for which the performances are April 22 and 23. She is a Lost Kid in the ensemble. While I may cringe when I hear the prayer recited school-wide at dismissal because it is all about how sinful and awful we are, I have to say that her school has always been wonderfully inclusive and loving. I love that Sarah and any other kid who needs extra help are welcomed to be in the musical and their main support teacher stays for all of the rehearsals. Sarah's rehearsal schedule is getting ever more intense. Last week she had rehearsal Tuesday-Friday for an hour after dismissal. Tomorrow her rehearsal will be twice as long. She will come home in time to get ready for her swim lesson. She has rehearsal every day this week and in theory I will be able to drive on Thursday and Friday to pick her up. I will do a short test drive Thursday morning so if that doesn’t work for me there is time to request assistance. Thank goodness for Grandpa being in town for such things and many other moments of help and support this past week. Also thank goodness for Anna helping with piano lessons and swim lessons and some dinners. Thank goodness for the mom of one of Sarah’s classmates who has been bringing Sarah home after so many rehearsals and will continue for most of this coming week. 

Amy’s week was good, but sometimes she has feelings in the evening because her days are so full that she doesn’t get much free time. And yet, whenever we discuss dropping any of her usual things then she doesn’t want to. I can definitely relate to that as I often have felt similarly with my own life and schedule choices. 

The weather has been predictably ridiculously March-ish. The day I went onto my porch it was 70 degrees and I was in a t-shirt. The next day it snowed. We are at our mountain house for the weekend and while the snow falls outside, the kids decided to play at the beach inside. Sarah had been looking at old photos and wanting a sandbox. Amy had the idea to bring out a sand-colored blanket and put it on the floor as a small beach sandbox. Carl brought up our bag of beach toys. The kids used puzzle-box lids to scoop pretend sand and build pretend castles. Then Amy spread out a gray blanket to be water and fashioned a snorkel mask for herself out of a cloth headband and a pencil. Later in the day they used pool noodles as reins as they rode sofa-arm horses. For another imaginative game, Amy sorted us all into Harry Potter houses. She used a witch hat to determine which house was appropriate for each beanie boo, doll, and actual person. Sarah and I were deemed a fit for Hufflepuff while  Carl and Amy were sorted into Ravenclaw. I love how anything can be anything with enough imagination. While our family might have been this way anyway, I feel like we also came to it because of our Sarah-Rise time where the premiss for the room was that of course any scenario could be achieved with a few props and some imagination.