The 9-year-old boy who taught me how to suffer –

Reagan Lukyamuzi came to Eagles Wings in the beginning of 2017. He was severely malnourished and suffering from a variety of health issues, the greatest being stage 4 abdominal and liver cancer. Under the care of our founders, Bill and Ann Peckham, Reagan quickly gained strength and showed an amazing ability to pick up the English language. After about 6 months he was mostly conversant in it. Reagan had a way of winning everyone’s hearts who met him. The first thing I would say most people noticed about him, perhaps even more so than the tumor that caused his stomach to stick out as if it contained a soccer ball, was his smile. Reagan’s smile made other people smile.

Reagan underwent a year of chemotherapy treatment to reverse his cancer. The doctors only gave him 6 weeks to live when they first saw him, but he survived a year and a half beyond that. But slowly and very painfully, the cancer took away Reagan’s life. He died on October 18^th, 2018. The last couple months of his life were the most challenging experience I’ve had in ministry. He was on morphine around the clock to manage his pain. Because of the size of his tumors and their location, Reagan could only be in a sideways sitting position on the sofa. We put pillows around him, and we could only lean him towards his left shoulder or his right shoulder with no other position comfortable for him. He developed bed sores that made the bottom of his legs unrecognizable as a person’s to me. He had a catheter for urination those last two months and the only way he could have a bowel movement was for a few of us to dangle him off the edge of a sofa over a bucket.

One of the most amazing traits about Reagan was his thoughtfulness for others in the midst of his suffering. Whenever he was going to be assisted to have a bowel movement, he would ask us to put on the fan in his room because he feared the smell would bother us. He would study your face as you helped him checking to see whether it was an inconvenience to you to have to care for him. One day when he first entered his steep decline towards death, he had an attack that prompted us to take him to the clinic. At that time, he was most comfortable to be carried by one person supporting him from the middle of his body. Since I was the only person big enough to carry him like that, I took him to the clinic and spent the day with him there. It was Monday and every Monday at our office we eat posho and beans. Reagan knew this was my favorite meal of the week and so, when some of our other caregivers came to cover me so I could take care of some work, Reagan insisted they bring posho and beans for both of us, as we had not had any food the whole day. Reagan then waited for me to return to the clinic before he would begin eating. On another occasion, I took a shift staying in his room with him. He was awake through most of the night, so we had multiple staff and students take turns being on this duty. His main caregiver at this time was a young lady named Amelie Beckstein, who had become like his mom. In the morning, Reagan asked me if I planned to stay with him again that night. I told him I would stay with him every night if he wanted me too, but he said no, I think Aunt Alannah and Holden (my wife and son) will be missing you. That statement by Reagan really summarizes his character. He always thought of others even when he was in great pain.

In those last months, the most painful thing for us was to watch Reagan suffer. I would read the Bible and pray with him every morning and most evenings. He had become so versed in English by this time that he was well able to follow even large words. If he didn’t recognize one, he would ask me to stop and explain before we continued. His pain became so difficult that he would regularly ask us to kill him. He believed in Jesus. He was confident where he was going when he died, and he was so worn out from a terrible fight. I would answer him that I couldn’t do it and that our lives are all in God’s hands. But then I would withdraw to my office and I would weep asking Jesus why he couldn’t just take Reagan home. I would ask, “why must he keep suffering Lord?”

In September of 2019, I sustained a badly ruptured disk and another that bulged out of place while I was home visiting family in the United States. My family and I did quite a bit of driving visiting people and then we flew back to Uganda in November. This was probably just about the worst possible circumstances for dealing with the nerve compression I had from the disk rupture. The pain became so bad that I could barely walk and most nights I could not sleep. A colleague of ours took me for an MRI and that’s where my injury was first realized. I visited an orthopedic specialist who advised I must have surgery to correct the issue. I had tried chiropractic and physiotherapeutic methods, but they could not deal with the disk that had fallen out of place and was laying on top of my nerves. I went for what was supposed to be a simple spinal procedure in May, but it became anything but simple. I have had lower back problems since I was a boy. My dad always blamed himself for it for an incident where he dropped me when we were playing. The reality was that spina bifida runs in my family and I was born with it. It caused my spinal cord to become tethered to my spinal wall. In the surgeon’s attempt to get at my disk, my spinal cord was detached from the spinal wall and that brought on a flood of spinal fluid and led to a later emergency procedure performed by a neurosurgeon. The surgeries left me with little to no urinary and bowel control, almost complete numbness below my waist, and a lack of other physiological function and muscle control. It has been about 5 months from my second procedure. Many of my symptoms have improved, but I have new nerve pain that is every bit as excruciating and debilitating as that which I originally went in for surgery to resolve. The COVID lockdown period was actually beneficial for me since it allowed me to have rest away from work. But now months have passed, and life and ministry must continue.

As I sat in the lobby waiting to be admitted for my first surgery, I was reading Psalms 119. For the past few years, I’ve been asking God to grow my love for people. I find the greatest handicap in the Christian life to be a lack of God’s love in our hearts. This is the root cause for any genuine concern over another person’s eternal destiny. I have gone through the motions. I have had the opportunity to preach to tens of thousands of individuals in Uganda, but many times I’ve been disconcerted that without more love I will never be more like Christ. As I was reading Psalms 119, my eyes fell on verse 32 – “I will run in the way of your commandments when you enlarge my heart!”

The words resounded with the growth I’d wanted myself. I can only be more obedient after God enlarges my small heart. So, I prayed and asked God to give me that. I knew that in the surgical process, the temptation would be to simply focus on myself. But I wanted to reach out to my surgical team and nurses with the gospel. I know that many times when life is difficult, I become less likely to reach out to those around me. Do you know how God enlarged my heart? By allowing me to go through pain without end. I’m now in pain all the time. I can either minister and be in pain or not minister and still be in pain. Most of the time it is all I can do to keep a straight face having a conversation with someone at work. Sometimes I retreat to my office and lay on the floor. I’m on my own painkillers round the clock. Do you know who I have thought of many times? The little boy who suffered more than I have and yet who still loved the people around him. And I remember how many times I asked God why Reagan had to suffer. I had no idea that God was using him to deal with my own problem of having too small of a heart to really love people like Jesus does.

I look forward every day that I think of Reagan to seeing him again in heaven and telling him how God used him to help his Uncle Jonathan overcome the handicap of a small and selfish heart.