Thursday, October 27, 2016

On Life, Family, and that time Molly Mae was an only child

"However mean your life is, meet it and live it; do not shun it and call it hard names."  
― Henry David ThoreauWalden

Life sure has a crazy way of revealing itself and reminding me of the lesson to appreciate what we have when we have it, because as my dear friend Allahna says, "You can have it all...just not at the same time." Just this week, Molly said, "now that I'm in first grade, I want to go back to kindergarten, but when I was in kindergarten, I wanted to be a first grader." I said, "So what's the lesson?" and she said, "just go with the flow." Yes, that and appreciate what you have when you have it. 

Anna Cate has finally gotten well and is out of these horrible cycles of GI troubles that landed her in the hospital five times. She was so proud to send me this picture  that the inflammation and swelling finally went down!!!

Anna Cate (and my family) persuaded me to let her stay in Centerville through Halloween and I'm happy that they all get to have some good times there. She has loved the special times with her cousins. 

Mom sent me this picture of her in her costume. 

We are so grateful to my family for their sustained concern and care for Anna Cate, and ensuring her recovery, with he help of amazing doctors at Vanderbilt Children's Hospital. As my brother and I concluded, my father has been uncharacteristically compassionate and my mother has been uncharacteristically rational. It reminds me just how we rise to the occasion for family.  Anna Cate returns home to us in Virginia next Wednesday, November 2.

Life has certainly been odd as we've adjusted to a family of three with BJ home recovering from surgery. He cleans, prepares dinner, and organized the play room.  I like having a house husband! :) His surgeries went well. The first surgery  was the major one where the electrodes were placed, and when they hit the right spot, the tremor stopped and he became emotional on the table. Here is his description in his words the day of the surgery:

"In an operating room at Georgetown this morning, "Amazing Grace" was sung. Literally the nurses, my surgeon, my anesthesiologist and I all sang. My anesthesiologist and surgeon have never performed this surgery without each other. Coming from Vietnam, a Buddhist himself, this was the first song the anesthesiologist sang at the church that sponsored him to come to America in 1983. He said it was his favorite song and he said that was a big day for him when he came to this country and said,  "this is big day for you so let's sing Amazing Grace." Once we knew the surgery was a success, we sang. They say it is a tradition for this procedure for people to sing but no song has ever sounded so sweet to me!!!"

The next week, he had the receptor placed in his chest, 

And on Monday, BJ visits his movement disorder specialist to get "programmed," and we can start to see benefits from the whole ordeal. It has been an unusual, difficult Fall and as we are going through the motions for Molly, I'm finding myself thinking just how precious she is. 

Pretty much, I think she is such a perfect only child. She has been kind, patient, strong and in her element. 

But the truth is, there is definitely someone missing in the picture. 

Soon we will be together again, but in the meant time, we are not letting time pass without enjoying life, and we are thankful to Molly and her spirit for constantly reminding us of all we have to enjoy.

“Hardship often prepares an ordinary person for an extraordinary destiny.” -CS Lewis

Tuesday, October 4, 2016

Cycles and Canes

We left Virginia, and thanks to our dear friends, Robert and Melvin Mays, Daddy Doug came to get Anna Cate and me to fly in a private plane to Centerville. Anna Cate's best friend Leana came to see us off. 

It was hard for me to split up our family, but I think it is what's best for Anna Cate. 

She said goodbye to her Daddy and won't see him again until after his surgeries.

We arrived in Centerville and hoped to find answers and healing; she has had some good days, but they've turned bad; we have been on this roller coaster before but I have hope that with Vanderbilt's direction, we will get out of it. Since August 15, Anna Cate has been on two week cycles: one week in the hospital, one week out. She has a couple good days, but then her bowels stop, and she is in miserable pain. After visiting Vanderbilt, I have hope that with a certain diet their dieting gave her, we will see improvement.  Anna Cate needs to stay longer than a couple weeks in Tennessee, so we can make sure she holds on to the good days for longer and is under Vanderbilt's care for a few weeks. They have an excellent pediatric GI clinic where child psychiatrists and dietitians work directly with the doctor. The doctor gave me another name for the problem, which is all still in the same family of names we were given at VCU: adnominal migraines. Since we began with Vanderbilt, she has had bad days, good days, and then horrible days and as of Sunday night, she is back in the hospital. 

Last Wednesday was a hard day. It started with checking my voice mail and getting a good morning message from Molly, and when she said, "I hope we can talk after school" my heart was ripped out and tears flowed. 

The decision to keep Anna Cate in Tennessee for several weeks was not an easy one for me, and I feared it would be a harder one for BJ, and it would feel like my family and I were ganging up on him and hijacking his child.  But he surprised me and said, "I agree; she needs to stay there and get well -- I trust your and your family's judgement."

I spent significant time dealing with her school issues. I set up ways for her to learn the curriculum via google Apps for Education with enrichment from Daddy Doug.

When Anna Cate went to check her school email account, it was deactivated. After calling the school, I found out that when I signed up for school at VCU, she would be un-enrolled with Spotsylvania, but the only way to access it is to be re-enrolled, and the only way to enroll her is in person, which is impossible. We set everything up with the teachers to learn via google classroom, but after talking to her teachers, instructional technology and her principal, we are continuing to "home school" her using the classroom curriculum available by gmail. 

The logistics of her illness had been crushing, so I went running, a place I can always get some perspective.  The only activities I feel like doing are running and yoga. I bet I've lost so much strength because I haven't been able to pick up a weight, but the thought of picking up something heavy, while usually invigorating, makes me want to throw up. I wonder if it is because I already feel so weighed down. 

I can always relate metaphorical comparisons of running to life, and a long run in the country did not disappoint. 

Jus stay on the path, get out and see the largeness of this beautiful world. Anna Cate is going to well. It might take a while.  
Take Care of myself and just keep running. 

I noticed these flowers blooming on the side of a cliff. If they can hold on and even flower into vibrance,  I can too. 
"I took a walk in the woods and came out taller than the trees" -Henry David Thoreau

You can't even tell in this picture how steep that hill is that I'm running up. Maybe in the long run, the hills we are climbing won't really be seen in the same way as when we are on it. I've also noticed when I'm running, I never notice when I'm going down hill, but I always notice the incline when I'm going up hill. Why we do we notice more when we are struggling? Shouldn't we notice the ease of the down hill, the easy times?
When this truck stopped and parked on the road I was running on, I was a little alarmed, but was relieved when my friend Jennifer jumped out to finish my run with me! We ended up walking so we could talk, and she offered to help Anna Cate after I go back to Virginia.

Before I left Tennessee,  I found a yoga studio, ran again, and enjoyed some time with my nieces in between all the logistics and care for Anna Cate. I find myself so incredibly grateful that in the midst of these dark days, I have my parents. I thought as horrible and bad timing this all has been, it gives Kitty and Anna Cate such special time together and I was blessed to behold Tula for hours. 


So today, I'm back in Virginia preparing my mind and heart for BJ's surgeries, and trying to process being so sad about Anna Cate being back in the hospital.  This morning, I sat in my pajamas and watched Brene Brown on Oprah talk about her latest book, "Rising Strong."It was exactly the type things I need to hear.

We craft love from heartbreak . . .Grace from disappointment . . .Showing up is our power. Story is our way home. Truth is our song. We are the brave and brokenhearted. We are rising strong.”  ― BrenĂ© BrownRising Strong

Thursday is his "BIG" surgery, and in the midst of fear and sadness I'm finding joy in thinking about Molly's trip this week. Last week, she was invited to go on an adult trip to New England with Patti and other church friends, including her Mum Mum. It is not a secret that Molly prefers adults to children, and our friend Tina said it perfectly when I explained the trip to her, "these are Molly's people."

So, yesterday we took her to the church parking lot at 5:30 to begin her adventure. MumMum had plenty of activities planned to help her pass the time, including books and journaling so Molly can do school. (Marian was a 1st grade teacher) Patti packed her a bag and her teacher sent books and work as well. 
She looked so happy to be going!
 Patti's sister let her make some jewelry. Marian sent me this picture of her sleeping on a soft spot, Marian's lap.

 They made it to Plymouth last night. 

This morning, they visited a cranberry bog. 

When I got these pictures, I noticed Molly has Marian's cane!!!  Horrified, I texted and said, "did she steal your cane?" 
 And the response was, "yes, but I used her as my cane. . .hand on her head." 
I feel like there is a sermon there. I went to sit outside to write my thoughts about life and these pictures, and on my porch I found this lovely delivery from my friend Carolyn.
We've received love and support in many ways, and I'm constantly finding comfort hourly: this afternoon, my best friend is bringing me coffee, and our friends Susan and Dan are taking us to sushi. We are spending tomorrow night with my friend Dorinda before BJ's surgery. My friend Laurie is coming to sit with me Thursday. Back in Tennessee, Jennifer is going to relieve my parents and spend the night with Anna Cate; my friend Whitney, who is traveling this week, offered to drive three hours to come stay with Anna Cate to give my parents a break this weekend. So many ways we are being sustained, keeping me up, when I might lose my footing. 

Today, my prayer in the midst of the struggle is: 

Oh Holy Spirit,  Thank you for all the ways I've been shown Your love and support in these dark days, for the angels among us who are my canes. Make me worthy of all this support and a strong cane for BJ in the coming days. I see how Molly is using a cane to hold up MumMum -- make me as bold. 

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