Twenty-one years ago on July 6th, our son Adam was born. His older brother had just turned 3 and was so thrilled to be a big brother. Life felt complete as I held my baby in my arms. And then we found out that he had Down syndrome. We were devastated. So many dreams seemed squashed and the life we thought we were going to have went out the window with those broken dreams. Still, we loved Adam deeply and knew we needed to move forward. We tried to bravely press on but then found out that Adam had a severe heart defect and would need surgery once he reached ten pounds. Initially the weight goal didn’t seem challenging but as the weeks wore on and Adam struggled to gain weight, we realized that our baby might not make it. There were a lot of tears those first couple of months but also such tenderness and love towards this sweet, little baby who was fighting so hard to grow and breathe.
Summer went into fall and Adam was still barely 9 pounds and grower weaker by by the day. It was hard to remain optimistic that he would have any kind of “normal” life and it was heartbreaking to watch him decline. But yet, he remained sweet and so, so lovable.
Then one day in October, when I came home from work, our sitter told me that Adam had basically slept the day away, only waking briefly to eat a few times The doctor’s office reassured us that this was unfortunately normal, given how hard his heart was working but to bring him in if any drastic changes occurred. It was hard to sleep that night. I was fraught with worry and so tired. Tired of worrying, tired of being sad about the life we and Adam faced and just tired. I could barely hear Adam’s breathing through the baby monitor so I got up to check on him in his crib. He was sleeping, lying on his back, breathing slowly and quietly. I knew he wouldn’t wake because he never did in the middle of the night anymore. For a moment I thought, “Maybe it would be better if he died in his sleep. Maybe this life he’s facing will be too difficult for him and for us.” As I thought this, the tears streamed down my face. I was exhausted, broken and unable to fix my son.
Thankfully my faith was strong so I prayed. I prayed harder than I had in my life. “Please Lord, help me. I don’t know what to do or what to think. How could any mother wish that her son would die? What’s wrong with me?” It was then that I realized if Adam died, we’d think about him every day for the rest of our lives. Every, single day. How could I even think such a thing about my son? What was I thinking? I struck a bargain with God. “Please, please let my son live, help us to be strong and to be the best parents he needs. I need a sign though, I need something to give me strength. Please show me the way. I will serve you, Lord.” My tears were falling on Adam’s sleeper and he slept on. But suddenly, he stirred and opened his eyes and looked at me and smiled, a sleepy, sweet smile. What a glorious moment! Although only a soft night light lit the room, I felt as though a ray of light had just shined on us both. My baby, my baby! There was my sign. That sleepy smile in the middle of a very dark night was my salvation.
A few weeks later, Adam underwent successful open heart surgery at Mott Children’s Hospital in Ann Arbor. Adam went from pale and weak to pink and strong. He continued to grow stronger as the months wore on. Yes, life was still challenging at times but also fun and precious. Adam brought character and antics to our family life that we never would have imagined. He grew so strong that we referred to him as Bam-Bam.
He is still a strong young man and my “muscle” when I need help around the house. He’s the one who hauls our Christmas bins upstairs from the basement and loves to vacuum and clean cars. He’ll carry my groceries in for me and loves to move our furniture around, sometimes whether we want him to our not. :)
I often tell people that I’ve learned more from Adam than he’ll ever learn from me. He is our joy and the center of our family life and the purest soul I know.
My message to other parents is always to love and never give up hope. Look for that beam of light — it is there!