I was just two months into my first pastoral appointment when I received a call asking me to perform a funeral. While I had assisted with one funeral during my internship, I didn’t do much for it, and the person it was for died at age 96, so it wasn’t really a surprise. This would be the first funeral I ever did by myself, and it was for a family that had lost their son. Ethan had been born with a genetic defect called Spinal Muscular Atrophy. It is a disease caused by a recessive gene which means that both parents have to carry the gene, and even if both parents carry the gene there is only a 25% chance of the child being born with it.
Jane and Anil had two children when Ethan was born, neither of whom had the disease, and they did not know they were carriers until they sought help from their pediatrician when around three months Ethan stopped progressing in growth, and were told that not only would he not improve, but he would never be strong enough to lift his head, let alone walk or crawl. The disease would cause his muscles to continue to deteriorate with respiratory functions usually being most affected.
His lungs would fill with fluids and mucus making breathing difficult, so that his parents and caretakers would have to pound on his chest and back numerous times each day to break the mucus up, as well as having to stick a catheter through his nose several times a day to drain the fluids out of his lungs and that with all of this he might live to be two years old. He didn’t make it that long, dying at 15 months, and so I was called to work with this family and to perform my first funeral for Ethan.
Any time a child dies, especially an infant or toddler, there are bound to be some hard questions asked of God. At the time of Ethan’s death my oldest daughter was 18 months, and Linda was three months pregnant with our second child, so this hit really close to home, and I’ll be honest I didn’t know what to do or what to say. What can you say at a time like this? So I sat with the family and listened to their story. I made some mistakes, as is to be expected, but those mistakes did not include the things that are often said to parents who have lost children.
I know that some people inevitably said to Jane and Anil, that God loved Ethan so much that God wanted Ethan to be in heaven with God. But if God is everywhere, and if God is with us, then why would God need Ethan in a specific place. Or maybe they said, as they did to Harriet Sarnoff Schiff when her son Robbie died of a congenital heart defect, “I know that this is a painful time for you. But I know that you will get through it all right, because God never send us more of a burden than we can bear. God only let this happen to you because he knows that you are strong enough to handle it.” Schiff remembers her reaction to those words, “If only I were a weaker person, Robbie would still be alive.”
Sometimes we get so wrapped up in trying to answer what we think are questions, or to defend God or make ourselves feel better, that we truly miss the other’s statement all together. In the Book of Job, Job is a righteous man who cries out , why has this happened to me, and his friends seek to provide him with some answers, but end up making him feeling worse, because Job is not really looking for answers. Instead his cry of despair, just like those who make similar cries, should not be heard with a question mark, but instead with an exclamation point. Job was not asking a question, he was crying out to the universe in despair, seeking not an answer but compassion and to know that he was not alone in his suffering, that people cared about what happened to him, that he still had self-worth and that God cared about what happened to him.
In the 121st Psalm, we hear “I lift up my eyes to the hills – from where will my help come? My help comes from the Lord, who made heaven and earth.” Notice that the psalmist does not say, my pain, or my suffering, come from God, but that my help comes from God. As we looked at two weeks ago, I do not believe that God causes us to have pain and suffering, God did not cause Ethan to be born with a genetic disease as part of some grand master plan that we don’t understand, but what I do believe is that God was with Ethan and his family the entire time.
On the night that Ethan died, Jane said that they took turns holding Ethan, rocking him and telling him how much they loved him. Jane said that Ethan’s death was the most heartbreaking and heart wrenching experience of her life, but at the same time the most peaceful. She and Anil felt incredible calm in the midst of everything, and Jane, pregnant with another child, said that the baby was rolling and kicking Ethan as she held him, almost like a sign that everything was going to be okay, but what she also said was that they found God present in everything that happened throughout Ethan’s life, from the support they got from friends and neighbors, to the doctors, nurses and social workers who not only gave all they had to the family, but who gave themselves to so many others in need, and to the way that Ethan lived his life and the way he approached everything he had to undergo.
As I prepared to do the funeral sermon, I could not get through it without bursting into tears, and I really didn’t know how I was going to make it through, and so I stopped and prayed to God to give me the strength to get me through it, and I knew that at the same time that other friends and colleagues were praying for me, because I had asked for their prayers, and I was able to find within me a strength that I never knew that I had, and that I know that I wouldn’t have had without the strength I received from God as a result of those prayers. And one of the members of my congregation was also there that didn’t know the family, she simply came because she knew that I would need the support, and so she came to be there to support and pray for me, and that is where I found God and how God was able to transform this experience in my life. I find it in the strength and peace and hope and endurance that we never thought possible that we receive from our prayers, and it is the presence of each other as we support and carry each other. This is how God tells us that we are not alone, that we have not been abandoned, and that God cares what is happening to us.
Now if the Chitkara family were to truly ask me why this had happened to them, I would have told them that God was not the cause. God was not punishing them for something, God was not trying to teach them a lesson, God was not using them to demonstrate faith and perseverance, that God did not allow this to happen because God thought that they could handle it, or that having lived with Ethan that they might be better people or that others would learn from how Ethan approached life and become better themselves. Instead I would have said that there is chaos in the world, and that Ethan had a defect on the SMN1 gene that codes for a specific protein needed for motor neurons to survive, which is the medical reason, but does that really answer anything? I could tell them that we are all mortal, and since we are mortal that means that children die, just as middle-aged people die, as wrong as that might be, and the pain that we feel from that I believe is part of the pain of childbirth that God talks about when Adam and Eve are expelled from the garden of Eden. But does that really answer anything? I could simply say, as I did two weeks ago that the reason that bad things happen to good people, is because creation is still taking place in the world, which means that there is still chaos in the world, which means that there are things which happen contrary to how God might want them to happen, and so cells and genes sometimes go wrong causing negative things to happen, and we also have free will and so we sometimes choose to do things that bring negative consequences to us, or others choose to do differently than what God would have them do, and we are sometimes caught in those negative consequences as well. But do those answers really answer the question? The reason why those answers are not satisfactory is because none of those answers really give any true meaning or purpose to what we are undergoing.
This past week we celebrate Samantha’s birthday, and I am also coming up on the 2nd anniversary of my being struck with a kidney stone. Now what those two events have in common, which I am sure you were wondering about, is the fact that according to doctors these are the two most painful things that we can undergo as humans. But even though the pain might be the same, there is a significant difference between these events. While child birth might be painful, there is some positive outcome, some purpose that makes it all meaningful and worthwhile, and makes it so worthwhile that women are willing to undergo the experience more than once. But anyone who has ever had a kidney stone will say, without exception in my experience, “I hope I never have to do that again.” Because a kidney stone has no underlying purpose of meaning, it’s simply a mistake that’s happened in the body which has caused the pain. When we ask the question why, we really aren’t searching for answers so much as we are searching for meaning and purpose, because we feel we can bear anything as long as we feel that there is some greater reason why we must endure.
In her seminal work, Suffering, the German theology Dorothee Soelle says, says that in the midst of suffering we should focus not on where it comes from, but where it leads, what is going to be the result of this, how are we going to redeem this in our lives and in the lives of others. Science and medicine can tell us about illness and disease, about earthquakes and hurricanes and other natural disasters, but science and medicine cannot give meaning or purpose to these events, only we can do that by allowing God to transform these events in our lives. We shouldn’t be worrying so much about the why questions, because in most ways the answers are unsatisfying and for some ultimately unanswerable, but we can give these events meaning, we through God’s works in our lives, can redeem them, we can give them meaning.
In today’s passage from Romans, Paul tells us, just as we heard last week, that the Holy Spirit, as the gift of prayer, “intercedes with sighs too deep for words,” and that God makes all things work together for good. Notice that he does not say that everything that happens is good, which is what those who claim that God causes everything might say, but instead that God makes everything work out for the good. That even in the midst of the worst tragedies of our lives, that something good can come from them, not because God caused these things in our lives, but because God can use them and work and walk with us through them, so that they can be redeemed, so again the question we must ask is not really why, but instead what? Now that this has happened, what am I going to do about this, how can God use me and this situation to make something better?
When Joe and Sherril Garrett lost their 7-month-old son to what used to be referred to as SIDS, they were devastated. “It just seemed like our whole world just collapsed and we didn’t really know what to do,” Sherril said. But then they found a way to make a difference. She and a friend had previously talked about how expensive it could be for girls to go to prom, and as her friend’s daughter prepared for this event, he friend said, “You know, I want to tell you that as I sit here and listen to my daughter talk about who she’s going to go to the prom with, and I couldn’t help but think that 15 years from now you’re going to wonder who Jake would have taken to the prom.” Sherril’s initial thought was “15 years from now? I just need to get through today.” But that conversation planted a seed in her mind, and together she and her husband founded Dresses for Jake’s Dates, an organization which loans out prom dresses, shoes and jewelry, to girls who otherwise would not be able to afford to go to the prom. “If we can provide financial relief for one family and make one little girl feel like a princess for one night, then we’ve accomplished what we set out to do,” Sherril said. “We could crawl into a hole and feel sorry for ourselves because we lost our son, we really could. But we don’t feel like that’s what God would have us do.” Does this group make them miss their son anymore? No, but they are allowing God to transform their loss, to move from the why, to what are we going to do about it.
Rabbi Harold Kushner, who we’ve heard from quite a bit these past few weeks, in his book When Bad Things Happen to Good People, writes of his son’s death “I am a more sensitive person, a more effective pastor, a more sympathetic counselor because of Aaron’s life and death than I would ever have been without it. And I would give up all of those gains in a second if I could have my son back. If I could choose, I would forgo all the spiritual growth and depth which has come my way because of our experiences, and be what I was fifteen years ago, an average rabbi, and indifferent counselor, helping some people and unable to help others, and the father of a bright, happy boy. But I can’t choose.”
What he could choose, however, was what he was going to do with it, how he was going to make his son’s death meaningful, what meaning he was going to give not just to his son’s death, but his son’s life, and he has made meaning for millions of people. I know that walking with Ethan’s family has made me a different person and a different pastor than I would have been without it, which is why I talk about this even, but like Rabbi Kushner if I could choose to have it never to have happened, to be who I would be without that event, to have Ethan being a healthy happy little boy and his family unaffected by tragedy I would make that decision in an instant, but I too cannot choose, you cannot choose, none of us can choose. But what we can do is to allow God to transform our whys and make them meaningful not just for us but for others as well.
When we decide to get rid of God because of our tragedies, we don’t change the realities of the situation, they still remain tragedies and all we’ve done is to remove the only thing that can give us hope and peace and assurance and strength and power and mercy and grace and all the other things that we need to be able to move through these events in our lives, when we try and remove God we get rid of the only person who can work to transform our whys and instead to work together all things for good.
“Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away,” John says in the book of Revelation, “and I heard a loud voice from the throne saying, ‘see, the home of God is among mortals. He will dwell with them; they will be his people and God himself will be with them; he will wipe every tear from their eyes, death will be no more; mourning and crying and pain will be no more.” What God tells us, what scripture tells us is that tragedies and suffering do not have the last word in our lives, God has the last word, and that God can transform our whys, God can transform the worst events in our lives to the good, God can give them and us meaning and purpose if we allow God to do so. In Deuteronomy, God says “Behold, I have set before you the path of good and the path of evil, the way of life and the way of death. Choose life” (Deut 30:19). May it be so my brothers and sisters. Amen.
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