August 25: ARCs, a Dad Weekend, and Maybe the Answer

Last Sunday when we got home from a week away, Sarah went inside while Carl and I sat in the car summoning the energy to unload and get ready for the week. Sarah emerged carrying a box and saying it was heavy. Carl met her and took the box. I was busy on my phone. I heard him say, “it feels like books…. I said, it feels like BOOKS!” At that point my brain kicked into gear, realizing that it must be my Advance Reader Copies (ARCs) of Watching Sarah Rise. I leapt out of the car with many exclamations of disbelief and excitement. Holy moly! Carl captured the moment of my shocked joy and got an incredible picture of Sarah looking up at me adoringly while I’m holding the book. That picture is a miracle in itself. 

Amy started school on Tuesday, much to her chagrin and dread. Meanwhile, Sarah was very jealous and wanted to be starting school. Luckily Sarah did have junior orientation on Wednesday. Amy survived her week and the days seemed to get more bearable, though she still wishes she was on summer vacation. Mainly she feels that school is boring and annoying. It doesn’t help that lunch for 8th graders is at 1pm. That is a long time to wait when you have breakfast at 6:30. 

Friday evening for Carl and the girls included 
hanging out with grandma and grandpa, burgers on the grill outside until they were attacked by bees, driving to the strip to pick up Carl’s Pedal Pgh packet just before they closed, driving back to Regent Square to pick up the Run Around the Square packets and listen to the live band, Belly Dancing at Summer Fridays at the Frick, seeing friends, dairy- free ice cream at Cold Stone Creamery, and Carl playing guitar while Sarah cleaned up the kitchen (her idea). 

Yesterday Carl and the girls did the Run Around The Square, and Amy cartwheeled every time she passed people who were cheering, which of course garnered even more cheering. After that they went home for their weekly zoom with Mom-Mom and Pop-Pop, followed by lunch. They finished the day with a birthday pool party for one of Sarah’s school friends, and fireworks they could see from the balcony of our house. 

I was not part of the Dad Weekend adventures because on Friday I flew to Santa Fe to see one of my dearest friends from the past 43 years. My flight was supposed to be a sane 11am flight but it got changed to 7am. My headaches, vomiting cat, and an awake Sarah at 3:15am helped me get off to an earlier start than I had even planned on, so I was through airport security by 4:45. It is beautiful in New Mexico, and it is wonderful spending so much time with my friend. We have gone on hikes and enjoyed time in a lake, and today we will be exploring Santa Fe. 

My headaches are still a thing and I can see my doctor as soon as I get back. I say “can” because of course I am always hopeful that I have figured out some new secret that will change everything. Last week I thought polar bears were the answer, but my powers of imagination were no match for the headaches. Benadryl and Aleve also did nothing. I’m not supposed to take Advil or Tylenol because they can cause rebound headaches. I can do an imitrex nasal spray for a given headache and sometimes it works, but it doesn’t break the cluster. After dealing with more headaches in the airport and when I went to bed Friday night, Saturday morning I did have some helpful realizations. I remembered how it was helpful when I accepted that some things are sad and that I can feel sad fully without trying to run from my feelings. Given that my remnant of a headache wasn’t too bad, I had space to consider accepting the pain instead of running from it. That helped my whole body relax and breathe deeply in a way I hadn’t experienced in days. The more I let myself turn toward the pain instead of fighting it at all, the more it evaporated. Last night I slept soundly and peacefully. Occasionally I get a free night like that in the middle of the cluster, so while I am extremely grateful, I can’t yet assume that the cluster has been stopped. As always, though, I am hopeful that this is the answer to life, the universe, and everything. The proof will be in the days to come.

August 18: Maybe Polar Bears Leave the Pineapple

Polar bears don’t get headaches. Or, if they do, please don’t tell me. I have still been getting headaches, as if I hadn’t done my rescue remedies at all. Maybe somehow they only work if I suffer for several weeks first? Not only have I still been getting cluster headaches, but my hope and faith in what I believed was the solution is gone. My doctor has assured me that we can try again and if that doesn't work we can do Emgality, which would involve going into to get three large injections into my belly, rear, or thigh. Emgality was something I previously thought I might try and it sat in my fridge waiting to be administered by me or Carl, but every time I even considered it I imploded with panic. Anyway, this is a long way to get back to my first premise that polar bears don’t get headaches. Last summer when I studied with my Alexander Technique teacher Bruce Fertman, he led my group through various exercises involving animal imagery, and it was impressively impactful with changing how I felt and moved. The polar bear was the animal that was most helpful to me and it continues to help me now. I can’t simply tell myself that polar bears don’t get headaches. I have to build myself as a polar bear with my imagination to really shift my perception of how big my body is and how strong, fluid, and relaxed. I also bring in other animal images from Bruce that help me breathe, and notice when I have been holding my breath. All of that has been extremely helpful, and it was also not the instant magic answer to all of my problems as I had hoped it would be. 

Maybe polar bears also easily leave the pineapple on the plate. As I do not. To back up… Sarah helped me get groceries last week and asked that I get a pineapple. I did, and then one day I served pineapple chunks with a meal that she ate readily and easily. The next day I served pineapple again, and Sarah was having none of it. When she whined that she didn’t want the pineapple, I said she could just leave it on her plate. Instead she started throwing chunks off of her plate. Amy and I both got upset with her. Later, as Carl and I processed the whole occurrence, I realized that the girls and I could use practice with literally and metaphorically leaving the pineapple on the plate. Just as Sarah could have left hers alone with peace and equanimity, ignoring the fruit as if it had naught to do with her, Amy and I could have ignored Sarah’s upset and left that metaphorical fruit on the plate of the moment, as if it had naught to do with us. This is not so easily done for me, but maybe polar bears have an easier time.

Do polar bears have trouble with digestion? I don’t know. And if a polar bear is my answer, maybe Sarah needs a different animal, such as a fox, as her guide. Her digestive system has been having some difficulty for the past month, off and on. This past week was our week to have a relaxed summery time with beach days and not much going on, which was good since Sarah needed lots of nap time, fluids, and home facilities. I felt extremely stressed many times because just as I would think she was better then she would say she needed to hydrate or that she was feeling better, but that actually seemed to indicate that she was not feeling good. I always feel so responsible to have figured out what she needs yester-minute or as if it is my fault for the situation at all because if only I fed her differently or made sure she drank more water maybe things would be different. We have an appointment in early September to see her GI doctor to get more answers and guidance. It is hard enough to take care of one’s own body, never mind the body of someone else whose sense of time and conveying of information can leave me feeling like I’m navigating an Escher print. Add to this that Sarah started her period, and I’m about to start mine so instead of us always having soft snuggly care between us, sometimes my response to her upset and malaise was harsh, brittle, and loud. So then I got to feel like a doubly bad mom. It’s been a bit rough, even as we have also had many wonderful, joyful moments. 

The joyful moments have included me going on an outing with the girls to get a wheelbarrow, receiving help from a stranger in the parking lot who saw our plight as we tried to get it in the car (while I considered that I might have to leave Amy by herself at Lowe’s while I took the wheelbarrow and Sarah back to the house - but didn’t have to because of the help), getting Sarah-friendly ice cream despite set-backs of places advertising it but not actually having it, and finding a playground with swings that even worked comfortably for a grown-up. Another day we set out to do one small errand and ended up going to a Goodwill where the girls and I found some astonishingly wonderful things. I got some striped bell-bottom jeans, Amy found mermaid-scale leggings that somehow are an exact match for a jacket she found at a thrift store months ago in a different state, and Sarah found multiple pairs of perfectly Sarah-ish shorts. Amy also found many shorts and skirts, which is timely because she was down to basically one pair of shorts that really worked with her scoliosis brace.

Speaking of scoliosis braces, Amy and I had a zoom with the makers of the Whisper Brace and now that team of people is reaching out to Amy’s doctor and orthotist just as I am so we can get her the brace. If the Pittsburgh people who have taken care of Amy thus far in her journey don’t want to be trained in the new brace, then we will travel to Philly to make it happen, but hopefully we can usher in the start of a new option for bracing in Pittsburgh. The people who make the Whisper Brace would travel to Pittsburgh to train the orthotist and would return every three months to reassess the fit and continue the training. It’s a pretty amazing offer. 

We had Amy’s bestie and her parents stay with us at our mountain house for a few days, enjoying the beach together, playing games and music, laughing, eating, and relaxing. One night we played ping-pong, skeeball, and darts in our basement. Sarah eagerly wanted to try the darts, standing a few inches away from the board, moving her hand back and forth to aim, and then earnestly, sticking the dart directly into the board - but never giving herself the bullseye. Yesterday we went to the beach and a Bluegrass Festival. Sarah loved the festival and was extra excited when she realized we had purchased a carved wooden fox. She greeted the fox with delight, chin-presses, and kisses. Then last night she helped Carl fill the wheelbarrow with gravel and spread the gravel to new places in our driveway. 

While Amy has had her moments of being extremely frustrated with Sarah and feeling so mad there is no room for any other feeling, Amy has also been her usual incredibly wonderful self. On the day we were getting ready to leave for this vacation, I was out doing errands and Carl was working from home. We thought that meant Sarah wouldn’t end up crying outside on the corner for me, but we were wrong. Amy was at her bestie’s house right across the street and heard Sarah. She promptly went out and walked Sarah home with calm kindness. When Amy and her bestie enjoyed a day at the beach but Sarah missed most of it due to not feeling well, Amy ran over to greet Sarah when she did arrive. Amy even came up with a song for her sand ice-cream stand, mimicking Mink’s ice cream stand and song in the Frog and Toad shows that Sarah loves. 

Also, the best news ever . . .  Sarah will again have her beloved bus driver that she had last year!!!! 

Lots of love to you all. May you have an easy time leaving the pineapple on the plate.

August 11: An Unexpected All-Nighter

Two nights ago I pulled an all-nighter, but not for lack of trying to sleep. It was a new and weird experience. To back up for context… I haven’t had any cluster headaches in two years (thanks to medication), but one trigger for a cluster to start is high altitude. I have been lucky that usually plane flights aren’t a problem. Unfortunately, I think Denver is off my list for any future travel. I think it was being at the conference near Denver that triggered the cluster to start. Once started, it doesn’t go back in the cage easily. I bought a can of oxygen for hikers and that helped some. As soon as I got home I contacted my doctor to schedule injections into my head and get prednisone, which has worked in the past to tame the cluster headache beast. In all of my past years, though, I would wait longer to ask for help. I would always think I had figured out some new way I could manage the situation and resolve it on my own. The last time I did that, two years ago, I was in a desperate place by the time I sought relief, and an even more desperate place by the time I got it due to the ridiculousness of some medical practices. Anywho, I’m glad I switched to a different practice so I know they will get me in within a day or two of my call and I can see any provider to get the injections. I’m hopeful that once I taper off the prednisone I will stay headache-free and not have even tipped into the worst of the headaches. I finally admit defeat, that this is not a beast I can take care of on my own in any way and trying to do so just leads to nights of excruciating pain, keeping Carl and me up for hours. So now I will always seek help right away. Which brings us back to being up all night… I think it was because of starting the high dose of prednisone at 5pm instead of waiting until the next day (lesson learned). I could not fall asleep for the life of me. I read a novel start to finish. By mid-day yesterday I was able to nap and last night I slept normally. It helps to be able to spread the prednisone dose throughout the day. 

Otherwise the week has been a good one. I didn’t have much scheduled and yet somehow the week was still full of laundry, groceries, dishes, other errands, cuddles . . . and a day at Sandcastle that ended with a huge rainstorm. Good thing we had put on regular clothes again that we wanted to keep dry! 

While traveling is wonderful and fun, it is also great to be home and eat more regular food with more fruits and vegetables. Sarah’s system definitely needs some recalibration so I’m glad to have open, flexible days so she can nap a lot. We are attempting to nudge Amy’s sleep schedule back towards something resembling a school schedule since she starts back to school on August 20th. 

Amy has been creating varied and elaborate makeup looks to be characters from The Hunger Games or Inside Out. I love how her art carries to her face, so I’ve been getting her more eye shadow palettes, figuring this is akin to getting her colored pencils and paints. 

If you haven’t yet watched the animated Frog and Toad series on apple plus tv, I highly recommend it. We recently discovered several new episodes and have thoroughly enjoyed them. I have always thought Arnold Lobel’s Frog and Toad books have life lessons for all ages, and the animated versions do a beautiful job of expanding the stories. In Tomorrow Toad doesn’t want to do any of the things he should do. He wants to put everything off until tomorrow, but then he feels blah because he knows his tomorrow will be a very hard day. Frog helps him take care of each thing today so that his tomorrow no longer feels overwhelming. The one thing Toad forgets to do is get changed out of his pajamas - he will do that tomorrow! Sarah pulled a Toad yesterday and weeded while wearing her pajamas. I weeded too, but not in my pajamas. Sarah and I commiserated about our glasses migrating down our noses as we weeded. 

May your glasses stay up and your tomorrows not bring on the blahs.

August 4: Conferences and Community

What a time we have had! A little over a week ago, we got a ride from Sarah’s favorite taxi driver to the airport, ready to board a plane to Chicago for Higgy Con, a conference for kids with scoliosis. We were decked out in custom-made shirts that say “I’ve got your back Amy” for scoliosis awareness, with a list of family and friends on the back. I think we needed an extra suitcase just for Sarah’s joy at being with her bus driver and Amy’s joy to be attending Higgy Con. 

Higgy Con was so much fun! Amy spent every minute she could in the kids’ room where they played games and talked with other kids about their experiences. Amy was at a table of other kids her age who also wear back braces. There was a panel of teens and a panel of parents sharing their stories in the parents’ room, and the teen panel also spoke to the kids. The parents could attend presentations from various specialists and speakers. Amy made a new friend and I connected with the mom of that friend. We also learned about the Whisper Brace, which is relatively new but sounds amazing. I’m going to pursue getting one for Amy. Instead of being made of rigid plastic, it is made of more flexible material but still applies pressure where it needs to be to push against the curves. Kids who have Whisper braces can do backbends and cartwheels in their braces! (Assuming they could do such things before getting the brace.) 

Another highlight of the weekend was the fashion show. Each kid dressed in as much green (the color of scoliosis awareness) as possible and walked the runway while the announcer read what they wrote on a card, such as their name, age, and how long they had been wearing a brace or if they had spinal fusion surgery. It was beyond wonderful to cheer for each kid, what they have been through, and how courageous and strong they are. The whole conference takes something that could make someone feel different and isolated and celebrates them as part of a community. Later in the week, Amy celebrated her one year brace-a-versary August 2, decorating her face with pictures of curved spines. 

One night I woke to Sarah talking in her sleep. When I got closer to her I heard “traffic” and she moved her arms as if she was driving! A second later I heard Amy talk in her sleep, whispering quietly, “so cute!” Maybe both girls were dreaming about their favorite things - Sarah loving being stuck in traffic and Amy loving her cat. 

After a packed weekend full of smiles, dancing, and more green that I have ever seen, we wrapped up our Higgy Con time, piled into our rented neon green car (an unexpected bit of delight), and drove to see a college friend and his family. Sarah loved the baby and Amy enjoyed playing with the almost-two year old. Carl and I also got our fix of baby snuggles. Then we drove to Milwaukee for a short visit with some family members while enjoying ice cream on Pittsburgh Ave! We got into Minneapolis late that night. 

Our Minneapolis Airbnb was around the corner from the house Carl lived in through 5th grade. We had two days to explore the Carl Childhood Sites, but were surprised not to find any plaques commemorating his time there. Grandma joined us for one of our days. We spoke to the current owner of Carl’s old house, visited with the parents of his bestie from that time, played on the playground where he played (with new equipment of course), and ate delicious Vietnamese food. We napped, and we got ice cream from a place that had a sign declaring that they didn’t rent kangaroos. We watched the Olympics. We went to Minnehaha Falls, and Carl got interviewed by someone doing a news story about a restoration project - and he was on the evening news! So was Sarah for a second. We went to the sculpture garden. We went to a lake beach for about five minutes before the heavens opened with thunder, lightning, rain, and hail. We had dinner with family friends and took a picture of Amy sitting in very small chair that she last sat in as a baby. 

Our next adventure was flying to Denver for the conference to celebrate those with Sarah’s diagnosis, attending talks and parties, and just being together. The conference opened with a slide show with a picture of each special kiddo (or adult) attending so we could all cheer for what mountain they climbed in the last year. Sarah’s mountain that we honored was persevering through all of the rehearsals and being in her school musical, All Shook Up. 

Sarah loved being in the kids’ room watching her favorite shows and movies with other kids. Amy spent some time in the kids’ room doing art, some time listening to a sibling panel, and she had fun at the sibling event at Dave and Busters. The friend she made last year wasn’t here this time but she made a new friend. I connected with a mom I met last year whose daughter is older than Sarah and got some ideas for Sarah when she finishes school. 

This is not an easy road and we are so lucky to only have the challenges we have. Sometimes this can all just feel too hard, and yet the best antidote for that feeling is for me to spend quiet time with Sarah. The overwhelm I feel is often pertaining to how to keep her healthy and fear for the future. I also have frequent frustration and helpless feelings regarding our control battles or her explosive feelings when Amy is in the bathroom. At least at the conference I felt less anxious when Sarah screamed in our room because I knew many hotel guests would understand. I think Sarah and I will both benefit from some naps and snuggles when we get home. 

I am so glad the timing worked to attend both conferences. Both were informative, heart-filling, emotional, and a bit tiring! I think we will all be ready to have some time at home. We fly home today and will be met by Sarah’s bus driver.  

Lots of love to all of you. May you have a moment where a whole room is cheering for you and how you face your challenges.