Special Assignment, Raising a child with special needs
“Motherhood is a painful privilege.” Those words in my Bible’s biography of Mary pierced my soul. I had gotten up in the middle of the night in search of scripture that might ease my fears about my pregnancy, but now I was scrambling to figure out what God was up to. I had no reason to be concerned about the baby, except that my age put me at a higher risk of a chromosomal problem, about 1 in 100. I had an uneasy feeling about the pregnancy ever since the doctor explained the odds at my first prenatal checkup, and it wouldn’t go away.
I had never considered Motherhood to be painful at all. My first child, a son, was healthy and the pregnancy was relatively easy. As I wiped the sleep from my eyes and read more about Mary, I felt the Holy Spirit laying on my heart that this child would be different from my first and I should respond to God’s invitation for this special assignment the same way Mary did when she agreed to birth his son: “I am the Lord’s servant, may it be to me as you have said” Luke 1:38.
My husband didn’t know what to think of my news, and neither did I. By the time I had my first ultrasound, I had just about convinced myself everything would be okay. But, the ultrasound showed otherwise. We decided to have an amniocentesis, which tests the amniotic fluid, and would tell us everything about the baby. We waited for the results over Christmas, then on New Year’s Eve, the doctor finally called: “you’re having a girl, and she has Down Syndrome.”
I had very little experience with people with disabilities. I wondered what God had in store for me? How much would my life change by a child who might not be able to do anything? How would it affect my son? I felt like God had thrown a giant detour in my path. What about all the dreams I was sure he was on board with? What now? There was no turning back. The road ahead was uncertain, but my husband and I sincerely wanted to be obedient to God’s special assignment for us, just like Mary was.
We named Marianna after my mother. Her birth went smoothly and she was mostly healthy but she did have some issues. She would cry all night with stomach cramps, so we were in and out of the hospital during her first year. We closely monitored a hole in her heart, which eventually closed on its own. When Marianna was four years old, I began to suspect there was more to her diagnosis than DS. While her friends grew out of their terrible two behaviors, Marianna did not. She was bright and talkative but she did not like noise and she had trouble socializing. We never suspected she had Autism, until she was eleven years old. I always thought her issues were associated with Down syndrome, or maybe she was just hyperactive, but I began reading about children on the spectrum and took her to a psychiatrist for an evaluation. It was a relief to finally have answers, but the autism diagnosis felt like another shock for us to absorb.
Marianna has achieved more than I could ever imagine! She has taken ballet and jazz and performed in a yearly recital for nine years! Now she is a cheerleader at her middle school. She has modeled in fashion shows and serves as an ambassador for people with down syndrome. We are so proud of her!
The special needs journey has blessed our family more than words can describe, but it has also been challenging. There are so many heartbreaks and struggles as we try to fit into a world that values perfection and personal achievement. But God has seen us through and he has become our source of strength and the anchor that keeps me steady. My hope is that everyone on this journey would know that God journeys with us. We are never alone. He is constantly protecting, providing and turning things around so that our lives would have great purpose and bring him glory.