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.
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.
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.|
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.
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