Angelman and Innkeepers

Indeed, it’s been a while. I don’t think I’ve been inspired to write a blog in over a year. Well, let me rephrase that. I’ve started and written several blogs, but then realized my emotions were too raw to print what I would have to say. That is not the case today as I am sitting in Nicaragua on the last day of a mission trip.

The last year and a half has been one of the most difficult of my career. As I’ve written multiple times in previous blogs and in my book, I love my job. I truly feel blessed to care for patients. It has been a gift to walk with patients through some of the most challenging times in their lives. And, I had loved the leadership position with my employer for almost 14 years. Then, over the last two years, I realized my organization, through growth and acquisitions and the COVID chaos, had become quite corporate. I found myself asked to push through policies and procedures with which I did not agree, nor did I like. I was on the phone in meetings at 6 o’clock in the morning and at 6 o’clock at night, but not making an appreciable difference for my colleagues or my patients. I felt that I no longer had a valid voice at the table. God calls us to be salt and light and I was neither in that role. That’s an awkward position. The icing on the cake was a restructuring wherein I had a new leader 10 years my junior who wanted to teach me how to “be a leader.” (So, what had I been doing for the last 13 years???) I found myself frustrated and feeling impotent to affect change. God was clearly saying it’s time to move on but I was holding on, hoping things would get better. God used my son to smack me upside the head and solidify the decision to leave. He saw me crying and asked my husband, Joe, "What is mom‘s problem?" Joe explained to my son that I was praying through leaving the leadership position. He paused for a minute, and then said: “Oh, you mean all those phone calls she gets off the phone and she’s mad?” From the mouth of babes. It was time to move on. I wrote my letter of resignation that day.

Stepping away from that leadership role was hard and I grieved a very long time. Although I was assured of the decision, I found myself on my knees asking God what was next. And, how would He use me in a different way? He quickly answered by opening the door for some amazing service opportunities. Less than a week after submitting my resignation, I was asked to help start a chapter of the Christian Medical and Dental Association in Charlotte. What a joy it has been to birth this chapter and bring together other Christian healthcare providers who share a passion to spread the love of Jesus through their professions! Then, I was asked to provide counsel to a consortium of eight not-for-profits in the Charlotte community, City of Hope, in helping these organizations connect with healthcare resources. That experience led to the opportunity to serve on the board of Camino Community Development Corporation, an organization serving the Latino community in the Charlotte area. And, I was able to get back on the mission field with Bless Back Worldwide, traveling to Nicaragua last summer, the Dominican in January, and I’m back in Nicaragua today.

Most importantly, I was also given an amazing opportunity to spend more time with my kids. Since leaving the leadership job, I have not missed a single ball game! That is a gift to me, and hopefully to my children that they will remember. I don’t want them remembering me mad from work phone calls. I want them to remember a mom who was fully was present and fully engaged in their lives.

By the spring of 2023, a year after leaving the leadership role, I was settling into the new normal. I had new leadership opportunities in the community and I was back to my first love of seeing patients. I was comforted that I could spend the next 10 years of my career seeing patients and loving on the panel that I had built over 20 years of practice.

Then, in March, my employer threw me another curveball. Leadership walked in with a boxed lunch, and a meeting entitled “Discuss Uptown Office Strategy.” (Note to self: When they bring food, you should worry.) In a matter of three sentences, they explained that the rent on our office had doubled, the parking cost had tripled and there was not enough traffic in the Uptown community post-COVID to justify our presence. As of June 30, my office was being dismantled. As I sat there with tears streaming down my face, I was told not to worry. I definitely had a place to practice, and here’s where I was going. Devastating. My new office location would be 12 miles from my current location! Uptown to Matthews. The ultimate irony was that the leader moderating this meeting was my successor. Although a dagger to my soul, it was confirmation that I no longer belonged in that role.

So, the last three months I have walked through the Kubler Ross stages of grief. First sadness, then, anger, and now resignation. (I skipped denial because there was no denying this change was happening.) I have tried to see God’s plan in this move and I have tried to put on a happy face. Due to pre-planned vacation and my daughter’s college orientation in early July, I only worked in the new location three days before leaving on this medical mission trip. Indeed, the trip was horrible timing as far as being in new location, but I was not rescheduling this trip to which I had committed months ago.

And, as usual, God showed up in those three days. I just told someone on this trip that my life verse is Proverbs 19:21. My paraphrase: “Carmen may plan all things, the Lord‘s will shall be done.” Not sure why at 53 years old, I have to learn this over and over again, but, apparently, I needed remediation. Here we go again.

On the second day in my new location, there was a scheduling snafu, and no limits were placed on the number of new patients I could see in a day. (Because I’ve been in practice over 20 years, I have a very full panel. I still see new patients but Iimit the number of new patients so that I have the ability to care for the patients I have seen for years. Granted, I don’t know how the move will affect my patient population as I am not sure how many will drive the 12 miles to my new location! Only time will tell . . .) Thus, on that Friday before leaving for this trip, there were seven new patients on my schedule. I can tell you, that is overwhelming. Rarely do physicians see more than two new patients in a day. It takes exponentially more time to review the chart, get to know the patient, take a history, etc. Although I realized the scheduling snafu a few days before, I refused to make those patients reschedule as I did not think it was fair to them to be “turned away” when they needed to be seen. I decided to suck it up and get through it.

Frankly, it was rough for me and the clinic staff helping me. I was exhausted. We were all frazzled and we were counting down the new patients. At around 3pm, I walked in to see the last new patient on the schedule, and I was quite startled. The patient was wheelchair-bound, mute, and unable to communicate enough to take a history. Yikes. There were two doting women with her, laughing with her, talking to her and gently wiping the drool from her face. I learned this was her mother and a full-time caregiver who had cared for this patient for 16 years!! I was overwhelmed with questions trying to understand the diagnosis: Angelman syndrome. In 23 years of practice, I had never seen this diagnosis nor did I know anything about. I did my best to meet the patient’s immediate needs and learn as much as I could about her and her diagnosis. I was truly humbled and overwhelmed with the love this patient was receiving from her family and caregiver. After she left, I spent several hours scouring the literature, trying to understand this genetic disorder. Apparently, it is a chromosomal abnormality caused by deletion on chromosome 15. Individuals with this disorder often have seizures, do not communicate verbally, and rarely walk. However, they tend to have a jovial disposition and laugh often. In fact, some of the older literature called this disorder the “happy puppet syndrome.” Patients with this disorder may have a normal life expectancy if they have the appropriate care and do not have complications from seizures or aspiration.

I finished my charting late that evening, but I could not get this patient off my mind.

Fast forward four days. I was in the second day of clinic seeing patients in Nicaragua. Staff came to get me because they had a pediatric patient coming in and they wanted me to see the patient with the physical therapist to provide some movement recommendations that could be offered. Seeing pediatric patients is terrifying to me but I’m always willing to do whatever is needed on a mission trip. I wasn’t sure I had anything to offer.

Immediately upon seeing the 13-month-old child, I was shaken. He weighed 5.6 kg. That is 12 pounds. He appeared to be blind as his eyes did not track light, and he clearly had severe developmental delays and little to no muscular tone. The lady carrying him, whom I thought was mom, was cooing and talking to him with pure joy. I quickly learned she was his grandmother. The child had been abandoned by the mother at birth as the mother could not handle the child's needs. After we took vital signs and measurements, the grandmother handed me several crumpled piece of paper from the national hospital clinic, and I gasped when I saw the diagnosis: Angelman syndrome.

Wow! Prevalence for this disorder is around 1 in 50,000. I had never seen it before, and God just brought two patients into my presence in four days. And, because of the first patient I met in my new practice location and the research I had done on Angelman syndrome, I was able to educate this grandmother on her grandson’s condition, what to expect, and how to care for the baby. The love his grandmother had for this child was awe-inspiring. She wept just looking at him. She said she had no idea what she would do without him in her life. As she cried and I held her hand, I knew what to say. I was also able to tell her that life expectancy could be normal, if he had the appropriate care.

Speaking of appropriate care, I watched in amazement as this community in Nicaragua kicked into gear to care for this patient. Although the child had a list of medications on the crumpled paper from the national hospital to control seizures, he was taking none of them. The grandmother hung her head and confessed they could not afford them. Indeed, the child had several seizures in my presence. But, as we discussed the situation with the Nicaraguan doctor in the mission clinic, she committed to working to find the medication he needed to prevent seizures. Then, the physical therapist on our team spent time educating the grandmother and the health promoter from the mission on exercises to help him. As they started to move his legs and rub his back, you could see the release of his seizures and he began to giggle.

Let me take a moment to define a health promoter, or Promotoras de Salud, as they are called there. These women are volunteers in various rural areas around the clinic in Nicaragua who serve as lay “first responders” for their communities. They go through a nine-month program on topics such as basic first aid, wound care, disease prevention and hygiene. They then serve as boots on the ground in these communities. They allow the clinic to reach patients that are unable to travel to the clinic. I watched as this health promoter interacted with this child. Although, probably blind, the child knew her voice. Her demeanor and interaction with his child was nothing less than miraculous. She knew this child. She knew the grandmother. And she was providing reassurance and care. She was being hands and feet of Jesus. It was such a gift to see this program in action and witness how God was using these women. I was humbled and honored to know that this child and his grandmother would be supported, and this health promoter would be checking on them weekly.

When they finally left the clinic a few hours later, I pondered in my heart how in the world this grandmother could care for this child into adulthood. The grandmother was young compared to American standards, but this child required total care. My American patient was in her 20’s but she had every resource imaginable in our American healthcare system, including a full-time caregiver in addition to her mother. I wondered what the future would be for this baby. What happens if the grandmother gets sick? Who would take care of this child?

Then, two days later, we were scheduled to visit a rest home as part of our mission experience. I have never visited a rest home in a third world country, and I had no idea what to expect. Frankly, my expectations were low. I anticipated we would see individuals sitting in their own excrement, with bedsores, and in terrible shape. Instead, I was blown away. The residents in this rest home were so healthy and cared for so very well. Some were older, but some were disabled adults just like the child with Angelman syndrome. Once again, God showed me I did not have anything about which to worry. God could and would provide for this previous child.

The evening after the rest home visit, several of our team members were sharing their life verses. This one hit me:

I raise my eyes toward the mountains. Where will my help come from? My help comes from the Lord, the maker of heaven and earth. God won’t let your foot slip. Your protector won’t fall asleep on the job. (Psalm 121:1-3)

I heard God say to me, don’t worry, I’ve got this. I have this child. I have his grandmother. You don’t need to fix it.

And in case I wasn’t listening, this morning we had our last team devotion before heading home. Our team leader read an exert from a book How (not) to Save the World. She read the story from Matthew on the Good Samaritan. I’ve heard the story possibly hundreds of times over my life. I have always considered the hero in the story to be the Good Samaritan, who stopped to provide care for the broken traveler. Often, when you travel on a mission trip, you want to fix people. You want to provide help, you want to offer something they are lacking. Certainly in a country like Nicaragua, there are deficits in basic needs being met including food, shelter, clean water, healthcare. I have always wanted to be the Good Samaritan.

But our team leader presented a fresh perspective from Augustine of Hippo dating back to the 4th century. (Well, maybe not so fresh, but a perspective I had never heard!) Augustine suggested that Christians are not to be so much like the Good Samaritan but more like the innkeeper. Jesus is the Good Samaritan. He provides for our needs. He finds us when we are broken. He pays for our transgressions by his sacrifice. He lavishes us with his grace and abundance. We are just the innkeepers. We are to care for the people around us with the resources and gifts Jesus and our heavenly Father gives to us. We don’t need to go find the broken. Chances are, God has brought them to us.

In that moment, it all came full circle. I have spent 18 months worried about my leadership roles, my practice location, my patient panel, my mission opportunities. I’ve been looking for places to fix things. I like fixing things. But I need to realize

that my mission field is wherever God has placed me, and I don’t need to provide the resources to fix anything or anyone. In my home, I can be the conduit to provide safety, grace and spiritual guidance for my fabulous boys who are starting high school and my girls who are launching into adulthood in college. In my community, I can pray for and shower God’s love on people who are walking through difficult times. In my 10 x 10 exam room (whether in Uptown Charlotte or Matthews) I can be the channel for the healing power of the Holy Spirit. I just need to have my eyes and my heart open to the ones that God brings to me. Indeed, I have traveled on medical mission trips over a dozen times to countries, including Kenya, Haiti, the Dominican Republic, and Nicaragua. I guess I needed to travel this time to learn how to be an innkeeper.

You don’t need to travel outside of the United States to be an innkeeper. I challenge you to open your eyes to the people God has placed in your inn and use the resources the Good Samaritan has given you to bless them. He will provide you with everything you need and more.

“Look after him,” he said, “and when I return, I will reimburse you for any extra expense you may have.” (Matthew 22:35)