This girl is eleven years old today, and she is still the center of our universe. Every parent wants what is best for their child, and having a special needs child determines every aspect of both my life and her father’s life. She is the reason we currently live in Kentucky (eligible for Medicaid waiver based on disability), and she is the reason we bought a handicap accessible home. She determines the vehicle we drive when she is with us. She determines the jobs we have (or don’t have in my case since I decided staying home was the best choice), and dictates the insurance coverage we have. She affects when and how we travel. She influences even small decisions in our everyday life, but we wouldn’t trade this life for anything! She has brought so much joy to those that know her over the past eleven years! Even though we are celebrating quarantine style, we are making this day all about Sayla!
On this day, once a year, I allow myself to feel the full range of emotions that occurred on April 29, 2009. This includes all negatives and positives. The fear of having a stillborn, or my child not surviving once out of me, the anger that came when the newborn photographer showed me the example pictures she could take whether my baby was born dead or alive, the excitement to know if it was a boy or a girl, the fear of my first c-section, the anticipation to see the baby’s features, the fear that we could see the massive tumor in the baby’s head, the relief to have a team of 25 people in the room to help, the thankfulness that all grandparents were present from out of state…the range of emotions goes on and on. Through this emotional reflection, I have come to understand that Sayla Marinly truly is a reminder of God’s faithfulness and compassion. Isaiah 49:15 says, “Can a mother forget her baby at her breast and have no compassion on the child she has borne? Though she may forget, I will never forget you!” So basically, a mother is more likely to abandon her newborn, than God is to ever abandon us. Now reflecting back, even though God’s compassion was hard to recognize in the midst of those fears and trials, it was there, He was there. His plan for Sayla was to turn 11 years old today, and to continue smiling and spreading joy in this world! Happy Birthday to the one who made me a Mama!
I am honored and overjoyed to be Sayla’s nurse. When I got my assignment of a Two and half year old little girl and her list of medical history it was scary.
I prayed the night before that God will help me take care of her. The first day April stayed with me. I looked down at this precious baby and she had the biggest smile, I knew it was love at first sight. (Sayla has that ability to draw you in with just a smile.)
Love You Precious Sayla! Happy Birthday!