Gulf Coast Holiday

We just got back from a trip to visit J's folks on the gulf coast of Texas. You'd think Texas in August would not be a good vacation choice, but we look forward to it each year. R&G live very close to the beach and we spend our days inside in the air conditioning and go out in the mornings and evenings to enjoy the water and the sand. Personally, I love the heat (albeit with the choice of air conditioning when I want), so I spend a lot of time on their porch and in their garden while Toe plays with the grandparents. J came with us for a week and then went home to work. Toe and I stayed another week and continued our adventures. Here are some highlights from our two week visit:

1. Sea turtle release:
Apparently this is the time of year that baby sea turtles hatch. On this particular morning, they released three batches (they look like pepper at the feet of the guy on the right) and guarded against predators (mostly birds) while HUNDREDS of people watched. It's a herculean effort for a baby sea turtle to reach the ocean, even under the best conditions!

2. Time at the beach
We had breakfasts, barbecues, picnics, built sand castles, played in the surf, took walks. The constants were the perfect sand, the bathtub temperature waters, and the ocean breezes (acceptable because they were so darn warm!).

3. Fishing
Toe didn't catch anything but tried a number of times, with a number of different kinds of bait. My favorite moment was when the fish jumped out of the water INCHES from his line (but he didn't get a bite).

 
4. Swimming in the canals
R&G live along a canal system that opens into the bay. The water is hypersalinated and bathtub temperature. Buoyancy is incredible because of the salt content. You have to paddle to get anywhere, but not to keep yourself afloat. This makes for very peaceful swimming (and a great learning environment for someone who does not yet swim..).

5. Outdoor/Indoor Fun
We went to a place that had go-karts, bungee trampolining, and a ropes course. Toe was enthusiastic and (despite his fear of heights) approached it all with enthusiasm. HE was the one who wanted to do the ropes course. I went along for moral support. We were warned that once you started, you had to complete the course (the harnesses were uni-directional). He still wanted to do it. He complained the whole way and completed the course with only a little hand-holding. I was very proud.

We both tried bungee trampolining. Toe loves it. I did not expect that simply jumping up and down would activate my motion sickness, but after two minutes I was DONE. I had to sit on the ground and breathe afterwards. I personally won't be trying that one again.

Toe then cooled off with his Grandpa in the attached arcade (and after we went and played 18 holes of miniature golf).

6. Grandparent time
R did many of Toe's breathing treatments and watched a lot of Netflix with Toe to learn about his interests. He helped her with garden projects and she helped him bake a pie. We all played board games and board games and board games.

As a parent, actually getting a vacation can be hard. Wherever you go, you still have to take care of meals, laundry, details. I love going to visit the grandparents because there are 3-4 adults dividing duties, so I get a real break. I helped with meals, laundry, packing and unpacking the car for the beach, taking care of my kid; I was not having to make all of the decisions and I had time to just rest. I read two books. I sat and looked at the water. I took naps. Meanwhile, Toe and his grandparents had some quality time together. And I got to enjoy the water. The thought of swimming in that warm water carries me through the year.

Rock Climbing

I tried rock climbing for the first time at a Women's Expo in March. It was an amazing experience. I know I shouldn't have been, but I was nervous. I hate that falling feeling. A dear friend offered to climb with me. I think they gave her a harder course than I had... We both did pretty well. My arm strength is not that great and the grips got harder the higher I got. I made it to the top and pressed the buzzer, but my arms were tired. I was not able to look around and enjoy the view - I headed straight down. I couldn't bring myself to just ride the harness down, I had to climb.

By the time I was back on the ground, my adrenaline was going and my heart was racing. I knew that my arms would not be able to do that climb again any time soon. However, when someone offered me a bag of apples a few stalls over, I couldn't say no. I spent the rest of the afternoon carrying around a giant bag of apples. Couldn't just give the arms a break.

Closing Lenore's estate the past few months has felt like rock climbing, except each time I think I have reached the top and can start down, I find there is further to climb.When I finally do reach the bottom of this Lenore project I am going to be VERY tired. And I'm guessing when I'm done, there will be apples for me to carry...

Clearing Out

A moving van perfect for three. Thank goodness we're not actually moving.

Closing down Lenore's estate continues. We have gone through the house, found the photos, journals, and other important papers, chosen the items we want to keep, offered items to friends... Lenore was a relatively organized person with a fairly organized house. However, she had lived there thirty years. This process has taken time and been emotionally draining.

I have spent almost every Friday in Portland since Lenore was diagnosed at Christmas, first with her, then closing down her house. I have been supported by my mom, my dear friend AL, and Lenore's friend Michelle. We have sifted, unpacked, sorted, packed, had work parties with larger groups....The process is ongoing.

A weekend about a month ago it became time to pick up the furniture for our family, my mom, and my sister. We rented a moving van in our own small town because we had a couch to take to some friends, drove to Portland, unloaded the couch, and then the friends helped us load up at Lenore's. Apparently my spacial prediction skills are not that great - we rented a much bigger van than we needed. Better too big than too small.

An interesting experience: renting a U-Haul, but not actually moving

It was painful to watch the items leaving Lenore's, even knowing that they were coming to us... Every step makes it less Lenore's house and more a shell... I took a walk in the back yard and her rose garden is already in bloom. Here's what I harvested that day and send home with our friends:

Seeing all of those blooms and knowing that she's not here to enjoy them was maybe the hardest part of the day for me. Len was a very earthy and sensual person - she enjoyed how things looked, tasted, smelled, felt. She appreciated beauty in many forms and her garden gave her so much pleasure. Her house and garden were an extension of her self.

Since then, the rose bushes have gone crazy. They are covered with blooms, some of them more than 10 feet high. The back yard has become a rosy jungle.

I am learning a lot from this process. One is that everything in the estate/probate process takes considerably more time to complete than I anticipate.The house is no exception. The clean-out continues. The Portland trips continue.... I suppose this shouldn't surprise me. A life is an amazing and complicated thing; closing down a life is no different. In this complete process I am gaining new respect for those people who have helped aging parents, who have lost relatives and then had to close things down. I did this when my dad died ten years ago, but his estate was incredibly simple, and my memory has been very selective. I remembered the grief (still feel it), but forgot how raw I was for the first six months. I remembered how overwhelming the tasks were, but had forgotten why.

MEANWHILE....

While all of the issues with Lenore have been happening, life has continued with zest and fervor in our corner of the coast. J's folks came out to visit in January for Toe's birthday. One of Toe's buddies who was born the day before Toe held a Jedi birthday this year and we took Toe to Portland to attend. Highlights of the party were Jedi training with a stage combat/martial arts master who taught them a real combat sequence (but only after he talked to them about The Force and feeling energy in your body and breathing) and building their own light sabers. It was an impressive party, well managed by the parents, and so much fun.

Jedi Toby-Wan-Kenobi

A week after Toe's birthday, J celebrated his. I tried my hand at making a German Chocolate cake. I had no idea how labor intensive it is! It was not the prettiest cake, but it was delicious. A dear friend brought J a cake to celebrate, so we had two.

Lighting the non-German Chocolate Cake

 Toby, J, and I all got bikes for the birthdays and so now we have the task of teaching Toe how to ride his without training wheels. It will take some time for him to learn to balance and steer at the same time. It is not coming naturally for him, and he becomes frustrated easily. We're taking it in chunks.

 We also inherited a dog from Lenore - Sasha. She is between twelve and  fourteen, a Belgian Malinois? Sable Shepherd? and an absolute LOVE. We've had fun getting to know her - taking her for walks, brushing her, spending time in the yard... She loves walks and people food and trips to the vet (she spent time as a vet-tech training dog years ago, so she is really comfortable there). She really HATES metal bridges, riding in the car, and having her people being on different floors of the house. She is very polite with people and other animals and great on a leash. She charms people wherever she goes.It has been a joy adding her to our family.

At the end of February, we took J's brother, Uncle Awesome, to the airport to return to Peru. He has taken a job down there and plans to return sometime - maybe in six months or a year. He was with us for a whirlwind two months and we will miss him.

The day after we took Awesome to the airport, J and I celebrated our fourth wedding anniversary.
We were married on February 29, so after 16 years, we have only had four true anniversaries. We celebrated by taking Toe and another couple out to dinner.

 Recently, Toe took the radio world by storm. A friend of ours runs a children's hour on our local community radio station once a week. While she was on a trip recently, a group of our actor friends filled in for her. We sang, read stories, and J played his guitar. Toe took to the venue as if he had been doing it forever. He introduced himself and his parents, read the Jules Pfeiffer book Meanwhile, told jokes he had made up himself, and generally made himself at home in the studio. It was pretty hilarious.

 For Easter, we went to my "big brother's" house for brunch. He had some mutual friends staying with him and they made an amazing breakfast (it was Indian food, so a little spicy for Toe, but J and I LOVED it). It was the first time I've seen Marc in a while and we had a good time catching up.

 Finally, spring has arrived in our neighborhood. Our azaleas, periwinkles, and fruit trees are blooming and we are spending more time in the yard.

Other events have included a visit from J's Aunt Betsy and Uncle Craig (first time we have seen them in sixteen years), taking Toe to see Waiting for Godot and Twelve Angry Men, saying goodbye to Toe's godparents who are moving back to Minnesota, and continuing with our daily routines of breathing treatments, work, school, and lots of laughter. Kind of a busy winter-into-spring.

Loving Lenore

Post-Christmas dinner, 2015 (steak!)

 Right before Christmas, my eighty-four year old cousin, the yoga instructor with 1/4 of an acre in the city who lived off her garden all summer, went into the ER with numbness on her right side and was diagnosed with a brain tumor. The tumor was deep in her thalmus and a biopsy was not possible. They did two weeks of radiation therapy to see how the tumor would react. As it did not react at all, they are pretty sure it was a glioma. Len's decline was rapid.

She went from fully mobile in late December to supporting herself on furniture and walls (she couldn't feel her feet but could still walk) to walking with a walker. Each week she has been weaker and we've been working to keep up. At first I thought she would do radiation and heal and be back in her garden by spring. Lenore knew better. She announced she was dying and that she had two months... Adjusting my expectations weekly was rough. She finally accepted Hospice care in early February and died February 19.

The amazing thing is that through this whole process she experienced a state of euphoria. She was not afraid of the process or dying and barring a few bumps accepted each new decline with grace and joy. She felt no pain. She was delighted to see visitors. Someone described her as "wallowing in joy."

Lenore was able to pass away gently in her own home thanks to an amazing team of friends and family. Kelli, a friend from Lenore's St. Andrews Catholic Church days (10 years ago), arrived at her doorstep, asking what she could do and ended up moving in with Lenore and providing 24/7 care for the two months of Lenore's decline. My dear friend Alisha served as her Medical Power of Attorney, coordinating all of Lenore's doctor and radiation visits (and attending many), and coordinating friends to come give Kelli respite every day. I served as Lenore's Power of Attorney and visited once a week, working to help Lenore file paperwork and apply for services as needed. An army of friends came to spend time with her, bringing her flowers and steak (her preferred food). With technical help from Alisha and her husband, Greg, Lenore was able to Skype with her daughter, Kathi, for hours each weekend.

Lenore's friends helped to re-house her animals (her dog came to us, the cats and fish went to friends) and have been incredibly supportive throughout the entire process. After her death, The Movement Center, one of the places Lenore taught yoga and where she was part of the community, held a Phowa for her, a traditional Tibetan Buddhist ceremony to help her spirit ascend. The ceremony was incredibly moving, a perfect memorial for a woman who lived life so fully.

It was an amazing journey, one that I can not capture in a blog post. As executor, it is now my gift to Lenore to close down the remains of her life. This involves a lot of paperwork, and going through her house... Alisha, Mom, Toe, Jason, and Lenore's friend Michelle have been by my side.

This is a sharp learning curve and I'm still in shock. The process has involved coming to terms with the fact that Lenore was dying, helping her on that journey, getting the pieces in place to make the clean-up easier, learning what being an executor entails.... I miss her. That's the bottom line.

Confusing Cough

Just a quick health update:
Toe has been sick on and off since late October. He caught a cold, recovered, and caught another. The CF team put him on antibiotics for two weeks and when he was finished, a dry, barking cough appeared. He'd cough one day and then two or three days would go by with nothing. Then we'd hear the cough for a few days. This went on through the holidays. Our CF team became concerned by the longevity of the cough. It does not sound like the normal CF exacerbation which is normally pretty juicy and productive (think smoker's cough). This is more of a dry, barking cough similar to an allergic cough.

Toe has asthmatic inflammation in his lungs and we already give him antihistamine, Albuterol, Flo-Vent, and Nasacort. The team decided to try Prednisone, a steroid, to see if this was an allergic reaction. The idea was that if it was an allergy, the steroid would clear it up. We tried the Prednisone for five long days (oh, the mood swings!) but it did not help.

There are many confusing parts to this cough: it doesn't sound like an exacerbation, alsoToe's lung function is fantastic - absolutely normal. But the cough just won't go away and in addition, Toe has had low appetite and been tired all of the time. So, we are now trying a two week course of a broader antibiotic. It has been challenging in that this antibiotic requires tricky timing with some of his other medications (no vitamins two hours before or six hours after the drug, taken twice daily, no milk products with the med), but we are working it out... Toe's energy seems to have improved. The cough is still lingering. We've finished week one of two... we'll see how this goes.

We have another appointment next week with the CF team. If this is not under control, there is a possibility Toe will need to be admitted to the hospital for IV antibiotics. We're just trying to take things a day at a time right now. He  has been to school since Monday this week (today is Thurs), which is fantastic because last week he only made it one day... We're considering that a win.

Plum Pudding

One of our favorite Christmas adventures was having plum pudding at the Flavel House with Nana and Papa. We arrived around 1pm on a rainy Saturday and stayed to close the place. The house is located in our downtown and is is a gorgeous historic site. Although we have lived here for years, J and Toe had never actually been inside.

Toe wanted to watch the introductory movie about the history of the river bar pilot, shrewd businessman and community member who built the house for his retirement (and lived in it under a decade). We then went and had tea and plum pudding at a large table with many guests.

Toe was well behaved and did a great job at tea. He used his manners, participated in conversation, and tried really hard to remember to drink from his tea cup and not his spoon.

After tea, we wandered through the house. The rooms are amazing - beautiful details and well restored. Toe was happy to wander through the rooms until we reached the children's room where there were period toys to explore - that's where we stopped... and stayed.

There were binocular viewers similar to the ViewMaster of my childhood, tops, checkers, and many other distractions. Toe was fascinated and we spent the afternoon sitting at a children's table, catching up with Nana and Papa, watching Toe play.

It was a perfect way to spend a rainy December afternoon.