SMA: Where Faith Is the Final Word

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By Martha Slay

When Andrew began school we had a little picture of Jesus that we threaded with red yarn and hung over the back of the seat in front of Andrew in our gray Pontiac station wagon. It had been Andrew's idea to hang this little picture. He thought that it would help him to be brave. Andrew was on his way to kindergarten with his bright red wheelchair called Hotwheels stored in the back. It was hard to send Andrew to kindergarten. (Not that he cried or complained. He rarely has.) But now, we had to trust God even more to keep him. Not just physically safe, but emotionally safe. As we look back thirteen years in this, Andrew's senior year, we cannot say that there have not been tears or trouble. We can say that we have experienced the miraculous many times as God has intervened in the details of Andrew's life.

Andrew was diagnosed with spinal muscular atrophy (SMA) when he was 14 months old. SMA is a genetic degenerative neuromuscular disease. It is the number-one inherited killer of infants and toddlers. Andrew was diagnosed with the "benign" form of the disease. An ironic word, benign. Andrew would never walk, or even stand. We were told that there was no treatment available and that many children did not live out their childhood. Though the day we received this diagnosis was beautiful and it was spring, to us it was the darkest day in our lives. From this point on, our lives would be clearly defined: life before and life after "the diagnosis" And there seemed to be no way out. This was the nervous system. This was wiring. Neurology is a long way from a broken arm.

The doctor said: "I can offer you no hope. Now, you need to get on with parenting."

Strange as this may seem, I am confident that we were prepared for the news we received. Though the news shook us to the core, the Lord had been laying in a foundation - a bedrock of strength for many months and years.

I was originally resistant to the idea of being a mother. I was big on my career, singing opera wherever I could. Being married offered enough of its own challenges, with travel and separation. But being a mom. Well, I knew that would really change things for me-forever. One day as I was sitting alone in the kitchen with my music scores, Bible and coffee-my mainstays-I heard a voice say very clearly in my head: "Why won't you let me bless you?" I had a strong feeling that soon I would be pregnant. I was right.

Sometime during the pregnancy, we found the scripture from Psalm 139, which says, "Behold, I am fearfully and wonderfully made and that my soul knoweth right well." We chose this verse for our baby's birth announcement. Many times I have remembered this time at the kitchen table. This memory has comforted me. It has reassured me that my husband and I were not "star-crossed." When we received Andrew’s diagnosis, it was hard to reconcile these verses with the reality that was pressing in on Andrew's and our lives. Andrew had crawled early. Now he was beginning to drag his feet behind him. It was agonizing to see him steadily lose strength, week after week. The verses from Psalm 139 told us that God was aware and with us. Though, I do not believe that God caused SMA to be a part of Andrew's life, I know that He had a plan to use the disease for great good for our family, for Andrew and for anyone who would come to know us.

We had been a part of an inner-city ministry where we would go on Sunday afternoons and worship with residents of a housing project here in Richmond and then teach little five year olds in Sunday school. Joe and I had been attending these services since Andrew was an infant. This was a service like I had never seen. Wonderfully abandoned praise. No holds barred. Pastor Wilson would say "Now get on your feet and praise God. Praise God that you are alive, that you are not in the hospital, that you can breathe in and out." Most any day, you can praise God that you are breathing. Learning to praise God was an important part of our preparation for the diagnosis.

Another part of our preparation were the years we were in a fellowship that really dug into Scripture. We were encouraged to read the Bible and underline and study the Bible like any other kind of text. We were taught to expect God to speak to us through what we read. We had been trained to recognize a 'promise' in the Bible and believe "All the promises of God find their yes and amen in Jesus Christ." Even before we were married while I was still living in New York, I remember going to hear Norman Vincent Peale preach at Marble Collegiate Church. He would pull a scrap of paper from the pocket of his robe, read the scripture and say, "This is what God says, and I did not say this. This is what God says." That simple trust in God and in His Word really impressed me.

Now, all that I have said about being prepared is true. Yet, the days, weeks and months that passed after we had been given this "sentence" were truly crushing. Many times I did not know if I could get out of bed. Only my duties as a mother made it possible for me to put one foot in front of the other. Just after the diagnosis, I don't think anyone could have reached into my throat with their fist and pulled out one word of praise. The thought of being able to praise God made me want to choke. Yet, as time passed I could eke out a little song here and there. Soon we began to understand that praising God in the midst of and in spite of our pain would break open our grief and allow us to see what God was doing in our lives. At a point when I was sure that I would go under, I would get a phone call from someone in our prayer group with the announcement that they were coming over (ready or not). I remember one night in particular where a friend tearfully asked me if she could please hold me. We needed prayer so desperately. At the same time, it was so hard to allow it to happen. Jesus Christ through His Body kept reaching out to us. He led us to services where Andrew could receive prayer for healing. He sent ministering angels to us.

SMA causes weakness. Weakness everywhere-in every muscle group. Andrew had many bouts with pneumonia and was hospitalized time and time again for years as a young boy. I remember looking through the window in ICU and seeing Andrew's kindergarten teacher gazing intently into his sleeping face. (She had begged to come and relieve me at the hospital.) Once during a particularly difficult and frightening time in the hospital, our pastor, Buzz Kell, came with oil to anoint Andrew and with tapes for me to listen to in the dark of the hospital room. One scripture from the tape was "And he has set the sand as a perpetual barrier to the sea..." The sand: the word of God. The sea: the sickness that was trying to force its way into Andrew's body. This was a lifeline message. The kind of message that helps you dig in and decide to resist. There is a passage in the Bible that talks about needing to be made "arrogant in my soul with strength." Many times I have prayed for this arrogance. God has sent this strength to me. Many times strength has come through hearing a passage from the Bible.

We attended many services over the course of Andrew's young life. Through these services in his early life, a foundation was laid to sustain Andrew. He learned to expect much from the Lord: to live in a state of expectation. Early he knew that he could depend on God to act in his behalf.

When Andrew was diagnosed we heard three words that described SMA: "neuromuscular," "degenerative," and "genetic." They were powerful words, but in the end, not the last words.

Neuromuscular: Tough; too tough to fix. And yet. through the years, we have learned that nothing is too tough. We can always make an "end run." If Andrew cannot ride a bike, he can ride in a miniature battery powered Jeep with his little brother Patrick hanging on for dear life beside him. If it's too tough to depress keys on a regular piano, he'll saddle up to an electric piano to play Telemann and Pachelbel. Andrew may not be able to walk on land, but he can walk in water with weights to strengthen his legs. It's really true: Nothing is too difficult for God. We do not have all the answers. Science clearly does not have all the answers. But, we can work to bring awareness about the disease. We can do all we can to empower scientists to find the answers. We can ask God to sustain and to inspire the minds at work to find therapy and a cure.

Degenerative: Things are going to get a lot worse than they already are. In many ways, we watched conditions change for the worse. Yet, in other ways we see that things are getting better and better. We have seen our son mature into a wonderful, caring and confident young man. Andrew has a future. "The path of the righteous is like the light of early dawn shining brighter and brighter until the full light of noon day sun." A little motto of Andrew's has stayed with him all through his youth and become a part of his life's philosophy as a young man. He never says he "cannot" do something. He prefers to say he hasn't done something "yet." Like every teenager, Andrew was yearning to drive. For Andrew to drive, we knew we would be facing several steps - hurdles, more like it. Yet, little by little the process fell into place. Through the two years of finding an instructor and a suitable van to use for instruction, and locating the right vehicle for purchase, and getting that equipped, and relearning how to drive in that particular car...Through it all, Andrew was patient and optimistic. He knew that it was a privilege to drive. And, he spent very little time comparing himself to other guys who were behind the wheel when they were 15. I guess I would have to say that there is very little to no benefit to comparing ourselves with anyone. It only leads to heartache and self pity. We had to decide that we were doing this driving thing (like every thing else in our lives) our way.

Genetic. SMA is all our fault. We did something terribly wrong. We have been punished and our child is being punished as well. No. We have seen God work in this situation for good. We have seen Him shape our son Patrick and daughter Megan into compassionate people who really want to be helpful, who really take people's part. It was horrible to learn this lesson in genetics. But, the genetics were our marching orders. "Genetic" told us clearly that we had been chosen. We were chosen to take up arms against SMA and resist a disease that had attacked our son. The genetics thrust us into an army populated with other parents whose children had been harmed by SMA. Andrew was severely weakened. Yet, many of our comrades' children cannot breathe without ventilators. Devoted parents continue to rage against SMA even in the face of their children's death.

We see rescue and healing for all children who suffer from SMA. We know that this is up ahead. We know that this is possible. This vision fills us with hope and determination. We are counting on God to give us strength and encouragement in the future just as He has in the past.

Now I watch the same little boy who piloted his red wheel chair valiantly into kindergarten pull out into the street driving a Dodge Caravan. College is next year. Is it French or Economics? We don't know, but we know that Andrew is game. He can't wait to get at it.

"For I know the plans I have for you," says the Lord, "plans for good and not for evil to give you a future and a hope."

The above article was written in 2004, Andrew Slay's fourth year in high school. He graduated from the University of Virginia in 2008.