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 Arteries (TGA). There were big holes in the septum, which separates the atria and the ventricles. The heart was twisted and was positioned on the opposite side of his chest. The chances for Matthew’s survival were slim.
That evening I went home, expecting a telephone call telling me that Matthew had passed away. When Natalie woke, she was wheeled to the ICU to see our little child, covered with pipes, drips, and probes. She had a chance to hold him, but not for very long because his body was frail.
The next morning came, but no telephone call. Matthew was still frail but seemed to be stabilizing. Days passed and he seemed to be getting slightly stronger. We started a conversation with the cardiologist, who indicated that it was possible for Matthew to undergo surgery. It would be risky because several interventions would be necessary. Matthew would in all likelihood not live a normal life, but we were informed that these interventions might offer him a fair quality of life, if he survived. Matthew was first discharged from hospital three weeks after his birth, but he had to return to hospital several times after that. At four months old, Matthew was admitted to the Sunninghill Hospital as a patient in the Walter Sisulu Paediatric Cardiac Centre. Given his frailty, the doctors had decided to try to fix everything in one go. Our baby underwent an eight-hour operation on January 22, 2004.
Matthew was discharged a week later and has since been extremely healthy. Thus far he has not needed further surgery and is as active as all his peers, a gift we thank God for every day. Every time we remember the journey we have been on, we know God has been with us. There were times of great uncertainty, not only regarding Matthew’s health but also concerning finances, fear of the unknown, and anxiety about what the future might hold.
In the years since, we have traveled a similar road alongside several families. Being a minister, I see these situations arise frequently, and every time I glimpse back into our own history. I write this book still with raw wounds but with hope that these reflections and prayers will be a source of encouragement to you and your family. Every child’s story is different, every family’s journey unique. I do not offer concrete answers or pretend that I can fully understand your history. These meditations and prayers are for parents and families who seek encouragement. I simply pray that you experience God’s peace and comfort during this difficult time.
The twenty-eight days of prayer are divided into four weeks, each week centered around a theme. Each seven-day cycle ends with a sabbath, so start your weeks on a Monday. Sabbath offers a time for rest and reflection. On that one day set all things aside to focus on your place with God and to give thanks.
Begin each day’s reading by taking a minute to reflect on the topic of the day. What does this mean to you? What goes through your mind when you are faced with the thought the topic suggests? Next, read the Bible text for the day. Read the passage slowly. Take note of words or phrases that stand out for you. Ask yourself what the scripture has to say about the topic. Then read the meditation.
These meditations represent reflections on the Bible passage and on the topic that helped Natalie and me as we grappled with our own questions. Each meditation leads to a prayer that starts with the words “Almighty God.” I have used this form of addressing God intentionally. In times when we feel weak, it is important to acknowledge that there is One on whose name we can call; this God is more in control than we are. Feel free to make the prayer your own. Fill in the blank lines with your own words.
Finally, consider the Suggestion that accompanies each meditation. Each Suggestion presents a practical way you might bring the topic, scripture, meditation, and prayer into your own situation.
I pray that these meditations, prayers, and suggestions will bring you strength, comfort, and the assurance of God’s presence with you.
Read Psalm 121:1-2.
There is no more numbing experience than finding out something is wrong with your child and you can do little about it. It feels like a bad dream, and you wish that you could suddenly wake up with the great relief that it was not real. But you don’t. Reeling from the enormity of the situation, you ask one question: What now? The small trickle of this question grows into a torrent of Why? How? Who? and When? It is easy to get lost in these questions, like a person who suddenly, without explanation, finds himself or herself in the middle of the wilderness, trying to make sense of what is and what should be. Join the psalmist in this barren place: “I lift up my eyes to the hills—from where will my help come?”
Don’t rush to answer this question. A Christ-follower might be tempted to respond with the following verse (verse 2) in the form of a cliché. Don’t jump to this concluding answer. Instead, allow God to minister to you in the midst of your confusion. Let God’s voice permeate through the darkness of this cloud; wait for God’s presence to reach you through the fog that prevents you from seeing beyond this point.
What is God saying to you? Take some time with this meditation. Read verse 1 over and over again, until such time that verse 2 reflects what God wants you to hear.
Prayer
Almighty God, my child is ill. I stand stunned by what I’ve heard. We were told that . . .
This is beyond my control. It is more than I can handle. Lord, please answer me! Where will my help come from? Amen.
Suggestion
Allow yourself to feel whatever emotions rise to the surface. If you want to cry, then do. If you feel angry, then be angry. If you feel at a loss, then simply hold this feeling in your heart. Try to surround yourself with people whom you love and trust, people who will allow you the space to express your feelings.
Read Psalm 121:4.
How
