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.

Zoo Lights!

 We finished early at our CF clinic visit and decided to make a quick trip to the zoo to see their annual light festivities. We have not been able to attend for a number of years because of Toe's health, so it was like the first time for him. For me, it was an amazing example of how quickly kids grow. Last time we went, I had a stroller and a baby carrier with me, and in the time it took to wait in line for the train, the kid cried because he needed to use the bathroom and then fell apart so completely that we had to leave after the train ride.

This year was a breeze. The weather was perfect: mid-40's, no rain. We could see our breath but did not need gloves. We got there early and walked around before the train started going. We didn't get to ride the adorable steam train, but instead rode the regular zoo train. However, it worked out better for us, because there was hardly anyone on it. We had a whole car to ourselves!!

Steam train on left, regular on right. We took the regular one.

After the ride, it was dark enough that we walked through the zoo again and it looked completely different (although much more crowded this time!). The Zoo Lights officially start at 5. We arrived at 4 and left by 5:30 as crowds began pouring in.

The tunnel of lights - my favorite, especially AFTER dark.

The experience is pretty wonderful. Various performing groups were setting up and we could see that one could make a full evening of the experience. However, we needed to get home and left after two "laps" of the zoo and a train ride.

Jason has been swamped with both jobs this holiday season and we have not seen him much. It was nice to have this experience as a family.

See the moon?

This was J's favorite. The photo does not do it justice.

Wall mural

Holiday Festivities

 Since Toe spent last December 15-31 in the hospital last year, we've been trying to celebrate the holidays throughout the month (in the off-chance that the hospital experience is repeated. Toe has been on antibiotics for almost two weeks). We've had some great experiences. We decorated the house (all but the tree - haven't gotten to that one yet...). We pulled out and assembled the Christmas train. Toe played with the Playmobil nativity. Here are some of our celebrations:

The TRAIN:
J's mom got this train for Toe when he was maybe two and we assemble it each year. The coal car's wheels have broken, but the rest of it has held together remarkably well considering the train spends about half the time on the track and half of the time "off-roading." This year, Toe has been much better about keeping the train on the track and enjoys having his figurines take rides to places across the country.

 HOLIDAY CONCERT:
Toe says he thinks this tie looks like a peacock. Last year, he was in the hospital and missed the concert. This year, the second graders sang "Rock the Holly" "While the Miller Sleeps" and then they sang "We Need a Little Christmas" with the first graders. They had hand movements. It was so adorable, I cried through the whole thing. Meanwhile J waved like a madman to get Toe's attention.... and then Toe started waving back. It was a pretty great experience (and we came away with no photos from the event...).

 COOKIES:
We drove over the river and through the woods to Grandmother's house, where we baked Iced Sugar Cookies (with a recipe from a neighbor from my childhood) and Esses (The recipe calls for a full pound of butter). We made the dough at our house and took it to Dama's to actually make the cookies.

Toe and Dad add sprinkles to Esses

Sunny was VERY interested in the process

Choosing cutters

Making Esses

 HANUKKAH
We also spent much of the week reading about Hanukkah celebrations and traditions and the Holocaust. We lit the candles with a prayer for loving kindness, understanding, and compassion...

We've also been brushing up on Christmas carols and of course the story of the birth of the baby Jesus!
Up Next: Zoo Lights!