Daily Scripture Reading: Psalm 146:5-10; 1 Samuel 2:1-8; Luke 3:1-18

On July 1, 2016, a light entered our world by the name of Bo Lawson Baker. He was my sister and brother-in-law’s third child and their first boy, my nephew. As with every loved child, we doted on him and “oohed and aahed” at his existence. He was a perfect child, beautiful in every way, and we thanked Our Creator for this precious gift. It wasn’t too long into his short life on Earth that darkness and doubt begin to creep into our lives as Bo begin to miss his developmental milestones and remained in an infantile state when other babies his own age were holding their heads up, sitting up, clapping, and crawling. We shrugged it all off the best that we could and tried to reassure one another that he would simply “grow out of it”. As other parents celebrated these precious milestones, we as a family all watched, prayed, and held our breath for our own celebration, but it never came. Around 4 months old, with no developmental progress, Bo begin testing for every problem and issue under the sun. Finally, at around 7 months old, Bo was diagnosed with an extremely rare genetic disorder called Aicardi-Goutières Syndrome.

I still remember the day that we found out. My sister and her children had come to visit me in Florida and we were at an Ocean-side park. It was an unusually warm February day and we were all enjoying the beautiful outdoors. It is so ironic that this darkness came crashing into our world on such a bright and beautifully sunny day, but as my sister stepped away to take a call from Bo’s neurologist, we had no idea that our world as we knew it would be changed forever. After she received the terrible news that her child would probably never walk, talk, or even eat on his own, and that an early death was almost imminent; I sat on the shore beside my sister speechless, my arm around her, a million thoughts, but not one word to formulate a coherent sentence. Both of us were stricken with breath-choking sobs to the point where I couldn’t tell my tears from hers. We were devastated and we mourned the child that would have been, the life that WE had imagined.

The next few days and weeks were full of tears and darkness, but we turned to our faith to get us through, and the light returned, or rather, we allowed ourselves to see the light that had always been. Because God’s light never truly goes away. We can pretend it’s not there, but it is a constant in our world, if we just allow ourselves to see it and BE it. As a family we embraced the motto “Faith Over Fear” and we realized that if we turned this situation over to God that we could finally see His light.

What we know for certain is that Bo will go to Heaven, no matter what, because he is innocent and perfect in God’s eyes, even though by man’s standards he is imperfect. We know that according to scripture that Bo was no accident or mistake, that God “knew him before he formed him in the womb” (Jeremiah 1:5) and that he was “fearfully and wonderfully made” (Psalms 139:14) just as we all are.

Through this journey, we have seen the best of mankind shine through with every prayer, card, call, meal, donation, and act of kindness on Bo’s behalf. Bo’s life has already brought so much light into our world and the world of others. We are truly blessed and we aim to fulfill the purpose that God has for Bo’s life by being his voice and his advocate, for we know that according to Romans 8:28 “All things work together for good to them that love God, to them that are called according to His purposes”. We have come to truly understand that this scripture does not mean that life will be perfect or even easy for that matter, but that if you truly seek God and His purposes, in ALL things, that light will shine your way, perhaps when you least expect it and in ways that you would never dream.

—Laura Fleck