For the rest of my life, this time of year on in the Islamic calendar will be dear to me. It is hajj season, and Muslim pilgrims from all over the world are performing the same rituals my wife and I did a year ago.
The hajj is a once-in-a-lifetime duty for every adult male and female Muslim. It is the fifth pillar of worship in Islam, though only those pilgrims who are physically and financially able to perform the hajj are required to go. The hajj involves rituals connected with the Prophet Abraham. It is part religious obligation and part dress rehearsal for Judgment Day, when all human beings will stand before God to account for their actions. The hajj is the trip of a lifetime for every Muslim. Many of those, if not most, going to Mecca are there for the first time, and I can feel their giddy excitement right here in Chicago. The hajj is the most powerful spiritual experience I have ever had, but the full profoundness of the experience has only revealed itself in the past year.
My oldest daughter, who is 7 now, has always been a bit clumsy. One day a while back, just a little concerned, we asked her to walk a straight line, something any soon-to-be-6-year-old should do. My daughter could not do it for the life of her. This was alarming. Being a physician, I knew what that meant: She had a condition known as ataxia, or an inability to balance oneself. In a child her age, ataxia frequently means a tumor in the cerebellum, the part of the brain that governs balance.
Concern changed to fright. We consulted a pediatric neurologist, and he ordered a brain MRI, which came back normal. He said that meant that she probably had had the condition since birth and would learn to adapt with time.
In our great relief, we decided to perform hajj that year in thanks to God.
But all was still not well. While we were gone, our daughter back home was hospitalized for pneumonia. Uneasy, we sought out another pediatric neurologist for a second opinion. She ordered blood tests, and on a Friday afternoon in February of last year, I checked my daughter’s lab results in the doctors’ lounge of the hospital. Everything was normal–except for one test. The number was off the chart, and this could only mean one thing: My daughter had a disease called ataxia-telangiectasia.
Ataxia-telangiectasia, or AT, is a very rare and horrific genetic disorder characterized by progressively worsening balance and chronic infections of the ear and sinus. For a child to get the disease, she would have to have two AT genes, one from each parent. Our daughter’s balance problems will steadily get worse, and eventually she will require a wheelchair. Children with this disorder also are plagued by infections because AT weakens their immune systems. Our daughter has already had sinus surgery and tubes put in her ears.
My wife and I were devastated. I learned about AT for a test in medical school, but who would have thought that my own daughter would be stricken with this crippling disorder? Seeing her struggle to walk each day makes me want to cry out in anguish, and it kills me to see her suffer through infection after infection. No one else in our family has anything remotely similar to this condition, so there was no way for my wife and me to know that we both carried the gene for this disease. In fact, the mutations on my daughter’s gene have never been seen before.
This is why the hajj was so invaluable. The entire ritual is a re-enactment of the ancient story of Abraham leaving behind wife Hagar and infant son Ishmael in the desert of Paran, modern-day Mecca, in obedience to the command of God. Similarly, my wife and I had to leave everything behind–including our children–to make the pilgrimage to that very same desert city. I spent thousands of dollars of my hard-earned money, used all of my vacation time, changed my entire work schedule and arranged for another doctor to cover for me. All this just so I could go to Mecca and worship God.
As a result, the hajj taught me some lessons. One of the most important of these is being patient with the will of God. It must have been very difficult for Abraham to leave his beloved wife and son in the middle of a barren and desolate plain. He did it anyway because God had told him to do so, and he had to be patient with what God wants. Thus, after coming home and learning of my daughter’s illness, I used that lesson to help me deal with my new reality.
What’s more, the hajj brought me much closer to God. The city of Mecca exuded an awesome and humbling power. Throughout the trip, I constantly talked to God, deepening my relationship with him, and I lean heavily on that friendship now whenever things in my life–be it my daughter or something else–become difficult to handle.
I was truly blessed to have been able to go on the hajj last year. The wonderful memories of a most wonderful spiritual experience will endure forever, and it could not have come at a better time in my life. Had I not gone to hajj before finding out my daughter’s diagnosis, I would have been in much worse emotional shape. I went into the hajj being grateful to God that I don’t have a daughter with cancer, and I have come out of the hajj equally grateful, because it gave me the tools to successfully deal with a daughter with AT. That is the beauty of the hajj.
