“I shall not die, but live, And tell of the works of the Lord.” (Ps. 118:17)
My husband chose this verse for our first son, Adam, shortly after his birth. Adam was born with Down syndrome and two large holes in his heart that caused serious circulatory issues. After his birth, he spent two weeks in intensive care fighting a blood infection, and another three weeks in the hospital for open-heart surgery at 7 months of age. He was dangerously close to death twice in his first year of life, yet the Lord preserved him. This verse reminds us that Adam’s life is an ongoing testament to the works of the living Lord.
Adam was born in a peaceful home birth on Aug. 29, 2003, and we rejoiced in the first few days of wonder and transition as parents. Our world crashed four days later, though, when he suddenly became very sick. We learned that the doctors thought Adam had Down syndrome. My first thought as I grappled with this shock was, “How will I know what to do?” I had trained as a nurse at Biola and worked for five years in neonatal intensive care in London, but none of this had prepared me to take care of a disabled son.
In April 2004, Adam needed open-heart surgery to have any hope of living beyond five years. He was so tiny and fragile, but I still remember his eyes as they wheeled him into surgery, looking at me as if to say, “_Don’t worry about me, I am secure_.” And this proved to be more than true; the Lord spared Adam from death, and gave him a new lease on life. Within two weeks of coming home from his surgery, Adam rolled over for the first time. When we left Germany three months later, he was sitting up.
We next moved to Aberdeen, Scotland, our current home. Adam continued to progress, walking at 27 months to our delight and relief. His brother was born soon after, and once again life settled for a while. However, a complete lack of speech and severe delays in social and emotional development led the doctors to diagnose Adam with autism just before his fourth birthday. This did not change Adam, but it did help to explain his often-distressing patterns of behavior.
For two years, Adam attended a day nursery for children with special needs. It was a joy to watch the staff work with Adam and other children with disabilities, taking such good care of them. He now attends a special needs school, and I love my visits there. It is one of the few places where I feel completely relaxed, because the kids are so fun and so genuine. Often when we are out I catch people staring at Adam, and have to remember how “odd” he must seem to them. But to me he is simply my lovely little boy.
Adam’s life has given me a clear sense of the ministry with children and adults with special needs to which our family is called. The Lord has opened the door to many who need his love in physical as well as spiritual ways. Now 7, Adam still needs help with every aspect of daily life, but the joy of seeing him smile, learn and run about on the playground makes every struggle worthwhile. He doesn’t speak, but to watch him at church is to see that Adam certainly understands the idea of communion.
My work now centers on helping churches in Aberdeen to welcome and embrace children with cognitive disabilities in their congregations. It is a blessing to talk to people from different denominations about their experiences, and to see the work God is doing in his body through children like Adam. But I have also seen that the sincere desire to love those with disabilities is only the beginning of knowing how to actually be together in community. Through my work I hope to encourage honest dialogue among Christians and begin to establish a network of support for families and churches. We held our first conference in the spring, and I am excited to see how God continues to shape his body in unity, and love, and a greater sense that we all belong together, with all of our abilities and limitations.
I thank the Lord every day for Adam, whose silence says more than my lifetime of words could ever say.