LITMIR.BIZ

      TABLE OF CONTENTS

      Introduction

      How to use this book

      WEEK 1: HOW CAN THIS BE?

      The shock of knowing

      Feeling exhausted

       Does God care?

       Why?

       Gaining clarity

       The gift of listening

       Sunday: Celebrate God’s Faithfulness

       WEEK 2: WHOM CAN I BLAME?

       Is it God’s fault?

       Was it me?

       Is it the devil?

       What about the doctors?

       Where is the church?

       Elusive peace

       Sunday: Celebrate God’s Presence

       WEEK 3: WHAT CAN I DO?

       Can I do anything?

       When I feel weak

       Allowing others

       When all I can do is pray

       When I cannot pray anymore

       Equipping myself

       Sunday: Celebrate God’s Ability

       WEEK 4: HOW DO WE LIVE?

       One day at a time

       Our daily bread

       Entrusting God with the future

       Faith

       Hope

       Love

       Sunday: Celebrate the Gift of Life

       Conclusion

       Reflection Questions

       Notes

       About the Author

       INTRODUCTION

      Events during the first year of our firstborn son’s life inspired this book. What you are about to read is based on our experience and the experiences of others who have walked the road of caring for an ill child. You will see that there are no generic answers but simply thoughts and prayers that helped us through difficult times. Allow me to briefly share our story with you.

      For two years Natalie and I had been trying to conceive without success. You can imagine our joy when the doctor phoned, saying, “You are going to have a baby!” We were ecstatic. Just when we thought that all hope was lost, it happened. We were going to have a baby! Not only would this child be our first, but he or she would be the first grandchild on both sides of the family. Grannies started knitting, grandpas talked about taking this child on fishing trips. This child was not only going to be our child but also would belong to the whole family.

      Weeks and months passed and, with the doctor, we agreed that this little boy, who would be called Matthew, would be delivered via caesarean section on September 11, 2003. We chose to give Matthew an unofficial second name, Nkosinathi. “Matthew” means “gift from God,” and “Nkosinathi” means “God is with us.” We couldn’t have imagined how much these names would mean in the months and years that followed.

      Matthew Nkosinathi Bentley was delivered on the morning of September 11, a Thursday morning. Everything appeared to go well with the procedure. Matthew emerged, a seemingly healthy little boy, screaming at the top of his lungs. I will never forget his face, all wrinkly, with his eyes barely open. The doctors and nursing staff quickly took him away to be weighed and to do the necessary checks. Then, without any comment, they charged with him to the neonatal intensive care unit. He was turning blue, a sign of lack of oxygen. Natalie was heavily sedated and did not know quite what was going on. I stood feeling helpless and all alone. What were minutes felt like hours.

      The medical team first thought something was wrong with Matthew’s lungs; they inserted drainage pipes, but this did not help. A cardiologist arrived; after a prolonged ultrasound, she called me aside. Matthew had severe heart defects, she told me. His aorta and pulmonary arteries were switched around, a condition called Transposition of the Great

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