Saturday, September 24, 2016

Stress and Showing Up

Last week while we were in the hospital for third time for excruciating pain with unresolved, unanswered questions about Anna Cate's swollen stomach, I was visited by a social worker.  I jokingly said, "Wow, I didn't think we were doing so badly that I needed a visit from a social worker." But in actuality, she helped me with the logistics of paperwork for my taking time long term leave from work and help us answer questions about school for Anna Cate. A few hours later, one of our favorite friendly faces, the delightful resident who has been on Anna Cate's case since our first visit to the ER in Richmond a few weeks prior, came in to talk about medical issues, adding, "I'm sorry I didn't tell you the social worker was coming in; we suggested it since it seems your family is dealing with a lot right now and we want to support you." In her letter to the school to excuses absences, she said our family was experiencing significant stress" and said in conversation we were in crisis. 

That word took me aback, because I've felt so supported and focused on the matters at hand that I didn't consider it, but it reminded me of these words from one of my favorite bloggers/authors, whose book, Love Warrior, I just finished last night.

"You have been offered the gift of crisis. . . . the Greek root of the word crisis is “to sift.” As in to shake out the excesses and leave only what’s important. That’s what crises do. They shake things up until we are forced to decide and hold onto what matters most."
So oddly enough in this time of stress and crisis, I have not felt too stressed (or I haven't completely lost my marbles or melted down totally yet, shall I say).  I think it is because I'm just holding on to what matters most, and I have an amazing support system, especially with my family and close friends. My best friend Norah has set up meals to get us through BJ's surgeries, BJ's brother and sister-in-law Sarah have been unwavering in their flexibility and my family has been all in with my parents here. My brother and sister-in-law have been top researchers and sounding boards.

Before I get to all my metaphoric musings on our situation, and the ways I'm processing it, I should explain what is going on with Anna Cate, which ironically does involve stress. While we were in Paris, she experienced horrible abdominal pains, and was diagnosed with mesenteric adenitis,  swollen lymph nodes in her belly. This was caused probably from a virus or bacteria; the pain is significant. To ease the pain, she was prescribed some narcotic drugs and a bland diet, which slowed her gut,  and she had to be hospitalized in TN. So a few days after she was admitted to Vanderbilt, she was cleaned out and felt much better.

We had a couple days in Centerville before we returned; she was still tender and sore but we felt like she was on the mend. We flew back to Virginia and were reunited with BJ.

Yet, back home, the pain came back and we rode a tail spin which led us into the hospital twice with no conclusive answers even with a complete workup of tests. We do know that  she is incredibly bloated, she is in significant pain but there is no physical evidence pointing us to why. So the conclusion is this vicious cycle of pain-stress-lack of motility, and the terms we have been given are different ways to the say the same type thing. The pain team diagnoses her with visceral hyperalgesia; the pediatric team terms it an acute case of  IBS, and the child psychiatrist diagnosed her with functional abdominal pain. The way I've explained it to her is that she had a storm in her belly, like an earthquake and what she is left with is the damage, and a step in getting well is learning to manage her pain and the stress, and slowly she will get well and her nerves will heal. When the child psychiatrist explained this to her, it gave her some comfort because we have heard hundreds of times, "something is wrong with me; it hurts so much."

 Today, her sister explained it well when Anna Cate shared she is worried about how to explain it her friends. Anna Cate said she is worried about how people will understand it, and I said, "ask Molly; she's a kid." Molly said, "her head is sick to her stomach."And by the way, no one, has insinuated this is not real pain, and many have suspected that she is subconsciously worried about her Dad and his upcoming surgeries, when we were asked if we have stressors in our life.

I know that as a child, she knows too much. She listens to adult conversations, and my inability to filter what I say and do have affected her (oh come on, you know there will be an element of this where I believe at some level this is my fault). I think, "Damn, I thought I was handling BJ's disease and upcoming surgery so well." I was going to make a neat and tidy list of what we need and be so brave and vulnerable to share it with my friends; I was going to put on that list for someone to go have lunch with Anna Cate the days of his surgeries because I knew she would worry. I was so proud of us and how we were handling things!"  And then another layer of life peeled off, the crisis hits: our most sensitive, vulnerable soul in the family was absorbing the stress in ways I could not have imagined.

My dad, who has been a mixture of a blundering crying hot mess and the Scarlet Pimpernel, says "Anna Cate is the nicest person I know, and that might be part of her problem." I believe the scores of medical professionals and volunteers we saw picked up on her special brand of kindness as well.
Here she was about to go back for the upper and lower GI scopes and she offered to share her show and ear phones to watch, "Cupcake Wars" with the nursing student. 
Amanda, a Nurse Practitioner, who was on the pain team helped her and me understand what was going on and how to help. 
 But there was one whom we will never forget -- the medical student Chris.

 He was our first visitor every morning around 7am; he reported to the big team what was going on and he visited her several times a day. We became friends, and the care he showed her touched my soul, deeply.

One time he asked her what she was watching (Cupcake Wars), asked her favorite flavor and then left the hospital in the rain to a nearby bakery to pick up a couple flavors for her. She said, "why don't I have one and you have one," and he said, "well I want you to try them both and judge them like on the show." So they each had a half of two. 

He told us he had stomach problems years back, and his level of compassion and ability to relate to her made our hours bearable. He is a sparkling conversationalist, with tales of world travels, interest in education, architecture and art so I enjoyed talking to him as well.

 We learned about his wife and his dog, and BJ loved that he is a Hokie. BJ tried to give him a bottle of scotch, but he couldn't take it.

My mom was here for almost two weeks, but Mom and Dad left on Wednesday and the favors my Dad has called in are breathtaking. A dear friend of ours from Centerville is bringing a private jet to take Anna Cate and me to Centerville tomorrow, and Daddy reached out to Vanderbilt and we have an appointment with their pediatric GI specialists on Tuesday.

Within hours of Daddy calling a friend at Vanderbiltt, he heard from a director of the children's hospital with these words, "I can give you hope! . . .I am a pediatrician at the Monroe Carell Jr Children's Hospital at Vanderbilt in Nashville.    I learned of Anna Cate's medical troubles this morning, and am happy to help!  I have reached out to our Pediatric GI team, and I think we have 3 doctors who would be great!   [One of the doctors at the clinic] completed an additional fellowship in complementary and alternative therapies for children suffering in pain."

We have decided that she will stay in Tennessee through BJ's two surgeries (October 7 and October 13) to visit doctors at Vanderbilt and to alleviate stress. She has had three good days; we visited school, met with her teachers, we have a plan for making up her work, and today we  had manicures and pedicures.  She helped her Dad organize the play room. I have reveled in watching Molly and Anna Cate reunite in play and cringed with their normal fussing. 

I notice some relief in her spirit for understanding what is wrong with her. It will be a long road to recovery, but I believe she might just be blessed with life some valuable long lessons. She will learn the power of mind over matter, the skills to manage stress, and how to balance caring for others and herself in a healthier way. 

I'm learning some lessons too. I really struggled with how to juggle it all, but decided to take advantage of FMLA and will be taking time off of work until after BJ's second surgery. I think the continuity of the same long term substitute will be good for the students in my classroom, although parts of me are dying inside to not be there. I just can't write sub plans the way I teach; I needed to walk away.  I've realized there is no substitute for wife and mother, and no price tag for my own mental health. It's funny, no one thinks twice about taking off extended leave to care for a baby, but there may be more than one time on this motherhood ride where work takes a back seat to family and health. I am so thankful to have a job I love so much, and a team of administrators and coworkers who are understanding.  

BJ continues to be calm, the perfect mix of pro-active and laid back.  Molly has been the epitome of charming and flexible. From Centerville to Fredericksburg, she has been shuffled about and so many friends have said, "I sure have enjoyed the chance to get to know Molly." 

Yesterday I took her lunch and she was very affectionate and got emotional when I started to leave and I said, "would you like to come home with me and Anna Cate?" Her teacher announced to the class, "homework for this class is spending time with family, and Molly needs to do that."  I like that homework:  we, too, are doing the work necessary to get our family healthy, body, mind and spirit.  

Maybe one day soon, I'll have a melt down, but at this point, I realize this is my gift. I know how to deal with disappointment, and walk through the hard times, replacing "why not me" with "why me." Through it all, I'm grateful -- for good health care, dear souls, friends and family.   I put out on social media that I didn't know where to show up and my wise, wonderful, dear friend Melanie said, "it might be time to let others show up for you. " And as I think and look back at the past 4 weeks, I see that; here are just a few images I happen to have on my phone. 

My pal Jennifer came to Nashville to bring me lunch, shower Anna Cate with gifts and then took Molly home.
Our dear friend and minister, Erin, came to visit Anna Cate on her first stay at VCU. 
Molly's 1st grade teacher, Mrs. Rivers, who is also a friend from church. We feel very lucky to have her. 

Our friend Alex came to visit Anna Cate in the hospital and brought her a zebra, since they both have a rare health ailment, and zebras are rare
Daddy Doug reading a book to Molly about worry.
And of course, there is Chris who showed up to bring us cheer and comfort several times a day. I think this is the first smile I saw on her face in days. 

 Friends, family, co-workers and VCU teams, thank you for showing up for me and my family so I can show up for my family. 

And show up for myself. 

"It is not the stress that breaks you, it is the way you carry it." - Lou Holz

Sunday, August 28, 2016

BJ's diary: Final Days of Paris

BJ's final days of journaling our trip to Paris. 

Day 8 (check list day):

We started the morning off going to the Luxembourg Gardens,  where Sarah took a 3 mile run and I took some photos and watched the kids sail boats in the fountain pool.  

 (That's Sarah running up those stairs)

We walked back to the hotel and Sarah was excited to find a juice bar where got some great “to-go” lunches for a picnic and beet detox juice for her. 

We decided to go to the palace of Versailles.  It was on a check list to do and I am glad to say we had a nice picnic in the gardens. We did not go inside, it is too massive and almost vulgar in its opulence.  I appreciate the beauty but just the walk through the gardens showed me why the statement “let them eat cake” set off a revolution of the common man to say "we are not paying for this anymore."

We took the train back to the city and walked along the Siene for another experience on the list: a boat ride.  It was very nice to see the city from a different angle.  

Scenes Along The Seine 1 from Sarah King on Vimeo.

We walked back to the hotel.  We stopped at the Highlander bar right next to our hotel (a local Scottish/English bar.  Seated next to us in Paris France was a guy that was attending Mary Washington College in Fredericksburg, Va.  He was an interesting dude that was hitting on my wife (I cant blame him, but he was a Trump person so not completely all together)

Dinner was at a French restaurant where I had 12 snails as and appetizer and lovely lamb chops for the main course.  Sarah had a salmon salad, then scallops as the main course.  The music was american pop so it was a little odd but another great meal non the less.

Day 9: Our last full day and 27500 steps ahead and we are off!

We had been wanting to see St. Chapelle and finally got there.  As we walked in we were like “ok, this is nice but what is the big deal?”  Then I noticed some stairs and we walked up.  Holy beautiful stain glass windows!!!  This church was built in 20 years and sits on the current grounds of the French supreme court; it is a magical place.  Huge windows with biblical stories adorn the walls.  I am so glad we made it.  

Back to the Lourve.  This was an extremely special experience for me.  My wife is way smarter than I am when it comes to history and information I often decry as less useful. . .like ancient information.  But then days like today happen and I see the joy it brings her,  and I realize it is very useful.  

We spent two hours in the near eastern rooms of the Lourve with such items as Hammurabi’s Code and artifacts of the earliest civilizations.  (It is weird these artifacts are in Paris but at least these treasures are safe from vandals)

To see Sarah light up and listen to her explain the earliest history of the world and to be so exited for the “in person” visual versus a text book was worth the flight across the ocean.    
Now to the part where Sarah tried to kill me (or collect life insurance as I think)  We ventured down the Champs Elysee and saw the Rodeo drive of paris. Including Ferraris  for rent for $80 euros for 20 minutes.  Then we get to the Arch de Triump with its 8 lane traffic circle around it.  I was like how do we get across and to quote sarah “rick steves says you just run across,  so we did and survived along with another embecile couple she convinced too.  We were quickly greeted by some french police that said no no (as they might have been thinking "dumb americans"; there is an underground walk way right over there.)  This is why I planned the trip .  But I will always remember the Arch de Triumph.

My Movie from Sarah King on Vimeo.

We witnessed a beautiful daily ritual at the tomb of the unknown soldier at the arch.  30 or so older vets presented flower and the colors, then broke into singing The French National anthem to honor their fallen soldiers.  A similar ceremony occurs everyday.  

We took the subway back to our hotel (at this point we are experts), met a nice family -- he works for the Israeli embassy and chatted until our stop, and came back to the Left Bank to enjoy our last evening in Paris. 

 We  took a few pictures at another "lock bridge."

 We enjoyed dinner next door to the oldest cafe in Paris. 

In 1686, it opened its doors and has been a hangout for the  the likes of Voltaire, Thomas Jefferson, Ben Franklin,  and Robespierre -- the list goes on.  We had great pizza and pasta, and of course, wine.   

Day 10: saying goodbye to Paris. 

We slept in a little, Sarah did a quick run down the Siene and I enjoyed people watching.  

We packed our bags and caught our ride to the airport.  

This was my one big oversight.  I did not want to pack wine in the suitcase for fear of it breaking so I had 2 gifted bottles from the wine makers where we shipped wine home in my book bag.  We made it through customs, but not security and they had to be thrown away.  Sarah wanted to cry.  She felt better with the complimentary Clarins spa treatments in the Air France business class lounge.  

This trip has been a life changing, eye-opening experience to share with the love of my life.  

I waited to do this, not intentionally,  but I let life get in the way.  Once life changed with my diagnosis of Parkinson’s Disease, I have been better about not letting life get in the way of living it. 

 My lesson from Paris is: You must come and see what Paris has to offer with the history, beauty, museums, people and love.  But most of all, you must live and not just go through life.  Don’t wait for life to change to have life-changing experiences,  but live it everyday, recognize all that is available, and live it.  

"Don't wait for life to change to have the life-changing experiences." - BJ King