Babycatcher

The US was an adventure all its own this time. The plan was our usual summer routine – we would live with my family, I would work full-time in L&D for five months and Clement would stay for three months. When we pulled up to the house, the sight of my 32 year old brother moving spastically behind the lawn mower informed me that things would be different.

Over the past several years my brother’s body has been changing. I first noticed his constant fidgeting and occasional spastic movements when I came home in 2007. He saw a neurologist in 2008 who told him all was normal and Craig explained his strange walk and shiftiness as a coping mechanism for his chronic back pain. Over time he began dropping things more frequently but the insidious change made it easy to believe he was merely inattentive. In 2010 when I came home, it was clear to me that a still unnamed demon was claiming more and more of my brother. I requested copies of his medical records from all the physicians he had seen over the past ten years – several general physicians, one pain specialist, and one neurologist. While my brother hunted for a job as a mechanic - which I saw as a sad futile task, imagining what a prospective boss might think as my brother walked into an interview - I tried to enroll him in a medical assistance program for the indigent, and with less than $2 in his bank account, he qualified. We took the first available appointment for three months out.

In one doctor’s note I read that my brother told the physician that he would try to get information about his birth parents. When I asked my brother what he had done, he told me he had not gone further than asking our parents if they had any information. My parents adopted my brother at the age of 10 months. A social worker initially told my parents they were unlikely to receive a child - because they were old, they already had a child, and they were an interracial couple. When they found my brother, an active toddler who also happened to be biracial, they were overjoyed. It was a closed adoption in 1980. Craig and I filled the paperwork to search for biological relatives and after several months an envelope arrived. The agency was unable to find anything apart from his birth mother’s death certificate. She had died in Detroit in 1992 at the age of 40. At that time she was living in a nursing home with no family listed. She died from a heart attack but also suffered from “cerebellum degenerative.” The news was a blow for my brother. He would never meet the woman who had brought him into the world. Even if he had not previously thought much about her, now she was real. She had a name. He knew the name she had given him at birth. He knew she had died alone when he was 13. He became quiet and sullen.

For my part, I became obsessed with the “cerebellum degenerative” on her death certificate. We went to the first appointment hoping to meet a physician who would refer Craig to a neurologist and were told that the doctor was out for the week and that we would have to reschedule for the next available appointment, two months out. That appointment never happened due to another conflict, and then I was on my way back to Ghana. Craig’s enrollment in the medical assistance program lapsed. A few months later our Dad took Craig to a neurologist and paid for the visit out of pocket. A second MRI was ordered. During the result visit the neurologist spent an hour and a half with my brother and father, reviewing the past medical records, the MRIs, the death certificate, and conducting a thorough exam. He told them he suspected Huntington’s Disease.

Huntington’s is a genetic neurodegenerative disease. A person with one affected parent has a 50% chance of inheriting the abnormal repeat cagcagcagcagcag on a certain gene. When Craig told me, I imagined a demon laughing, “cagcagcagcag.” Any person with the mutation will eventually become symptomatic, usually in their 40s or 50s. People generally survive 15-20 years after they become symptomatic. Those who become symptomatic earlier generally experience a more aggressive form of the disease. Huntington’s was previously known as “the dancing disease” due to the characteristic chorea or exaggerated movements. Uncontrolled movements become more and more severe while the muscles simultaneously weaken. The person gradually loses the ability to walk, to speak, to swallow. Craig told me that the most common causes of death are choking, infection, and suicide. A person without the mutation cannot pass on the disease. Craig has a daughter.

Due to the prohibitively high cost of genetic testing and the possibility of Craig needing several genetic tests, following a negative result for Huntington’s, the neurologist advised us to try to get the medical records of his birth mom before doing the genetic test. We were unsuccessful at obtaining medical records so when I returned to Texas this year, I called the genetic counselor at the center for movement disorders in Houston and scheduled an appointment for the genetic test.

My mother is also entering a new challenging phase of life. She turned 80 in October and though physically youthful, is living with significant dementia. People and tasks that were once familiar and simple are now unknown and challenging. She no longer drives or cooks. A thought will come and pass in the same moment. The direction of an act is lost on the way to carrying it out. My beautiful joyful faith-filled mother has lived so that her light fills spaces and hearts, but when we arrived I found her light muted by confusion and frustration.

Thulani was her medicine. During our months in the States, she fell head over heels in love with him and in his presence she was bright and alive. Every day she would move with him around the house, showing him all the pictures and art on the walls, turning lights on and off in the rooms, moving outside to look at flowers, and finally ending their daily tour near the statue of St Francis out back, helping Thuli touch the birds on his shoulders. She showed Thulani how to knock on doors, how to open and close drawers. One day I found them digging together in a planter. I could see the joy they both received in touring the world with fresh new eyes. She told me one day, “You know I love Thulani more than you,” and I laughed just so happy that they had each other. In her love for her grandson, I saw her love for her daughter, and imagined her has a new mom. She wanted him to experience the world in her arms, whether that was looking at the sky and the trees, or eating pasta and sausage and sipping Dr Pepper at four months. I had to stay alert. By the time he could move in a walker he would run to her with his arms outstretched in the morning or search for her in the laundry room when she was not around. I worried about their separation.

In August Clement returned to Ghana. Mom, Dad, Craig, Thulani and I made two trips to Houston for Craig’s genetic test and result. On August 31st 2011 in the presence of a psychiatrist and medical intern, the counselor clumsily delivered the positive result with a smile. The medical support team then sat awkwardly watching as my brother sobbed. We left. Afterwards, Craig spent hours online reading articles and watching videos about Huntington’s Disease. This was his demon, the one hiding in every cell. For years it was there, invisible but silently laughing “cagcagcagcagcag cagcagcagcagcag cagcagcagcagcag cagcagcagcagcag cagcagcagcagcag cagcagcagcagcag cagcagcagcagcag cagcagcagcagcagcag.”

So this was the new home, a home of transition, some loss, some sorrow, some change, some joy, and love. My father, at age 76 still works and would kindly tell anyone concerned that they are doing well, that they are managing. We would disagree about the managing part. I felt everyone could do with better nutrition and more support. At one point, Craig decided he could meet his caloric needs best by blending huge wedges of chocolate cake with raw eggs and milk (he must consume 3000 calories daily to maintain his weight). Mom would say she was hungry and then the next minute, tell me she had eaten. The house needed cleaning. They all needed rest, especially dad. Dad would tell me that things would work out, that he was changing his routine to care for them. We all did our best.

I filled out the paperwork for my brother to get on disability. I made phone calls and spreadsheets. I bought Craig manageable clothes and shoes (no more buttons, zippers, snaps, or laces). Every day rushing to squeeze in my year's contribution of support into my remaining days in Texas. Dad hired someone to install grab bars in the shower and bought a special chair for the table. We all went to support meetings for Craig. We prayed. I did a lot of worrying. It was exhausting and overwhelming. I irritated my parents with my “need to take over.” They assured me they would manage and that we must return to our life and to Clement in Ghana. At the end of October, mom and dad drove Thulani and me to the airport. Mom and Thulani and I all cried at our separation, perhaps all for different reasons but all because of love.