This is Part 1 of 2 of a special Stories of Faith series focusing on Down syndrome. We are so grateful for these brave mothers being willing to share their experiences with us! — Jackie Shafer, Stories of Faith Editor
Down syndrome. We didn’t even really know what it meant, and we’d just found out that our unborn baby—a girl, our surprise fourth child—had Down syndrome. We were still in shock that we were even going to have another baby, and everything about the future we’d expected was changed.
Looking back, the word my husband, Phil, and I think best describes this moment is devastation. Neither of us had any experience with anyone with this genetic disorder, and we were completely in the dark about what it meant. Almost immediately we were given the option to abort the pregnancy, so we quickly grasped the gravity of the situation. The doctor’s offer told us there was no value in this baby’s life, so how could I possibly see her worth?
I spent the remainder of the pregnancy in a complete stupor. I felt dead inside. People would ask about the pregnancy, but I didn’t know what to say because this baby’s life was a terrifying unknown. I didn’t feel attached to her at all. Would she be sick? Would she be happy? Would my other kids be neglected because of her needs? Would we ever be able to travel again? I thought our lives were ruined.
I didn’t feel close to God. How could He possibly understand me? Didn’t He know I wasn’t the type of person that could handle this? I couldn’t see it at the time, but He kept reaching out to me through other people. Everyone kept telling me it would be okay, and all I thought was, “You don’t know that! It might not be!”
Through a chance encounter, I met Babette, who had a son with Down syndrome. She taught me so much. When she heard I didn’t care about the baby, she said with a gleam in her eye, “Just wait until you see her. Just believe me when I say you will fall head over heels in love with her.” I thought, “No way.”
I went to a routine doctor’s appointment at 37 weeks. Phil was working in New Jersey, far from our home in Colorado. I’d been cramping badly all day, but I was in denial that it was labor. A non-stress test showed that with each contraction the baby’s vitals were dropping dangerously low. To my dismay, they said she’d need to be born today and sent me to the hospital.
I walked into the hospital completely alone. I felt the lowest I’ve ever felt in my whole life. Phil was across the country, it was the afternoon of September 10, and I just knew she’d be born on September 11, a terrible day. For the first time with this experience, I got mad at God. Really? This is how this is going to turn out?
As the nurse checked me in and got me ready, I sobbed. My phone battery was almost dead and I wasn’t even sure who would take care of my other kids. She lovingly gave me her charger, hugged me, and told me it’d be okay. This was the first of many tender mercies that night. I finally came to grips with the fact that Phil wouldn’t be at the birth. My sister, Jessica, saved the day and took care of my kids—picking them up from school, giving them dinner, and putting them to bed—and then came to support me through labor. My brother-in-law, Dan, came with a friend to offer a prayer and blessing, and I finally felt some hope and determination. I thought, “Okay, I can do this.”
During labor, I still felt no connection to the baby. But when she was born (on September 11, as I’d guessed) and placed on my chest, the strangest feeling came over me—a feeling that was more overwhelming than when I met my other kids. I instantly felt this need to protect her. I liked her. I loved her. I wanted the team of nurses there to check her and help her. Everything changed in an instant. Gratefully, I never again felt anger or hatred for her. I stopped thinking I couldn’t raise this child. Now, I wanted to.
We named her Annie. For her first month there was a halo around her, like an actual light. I remember getting her dressed one day up in my room, and there was this heavenly glow radiating from her. I kept looking around for the source, but it was her. When a friend came to meet Annie, she broke down and said, “What is this light around your baby?” Her countenance shone and there was a reverence that surrounded her.
I saw that as a blessing from God. He was showing me that she is special; she needs more from you than your other kids do, and she has purpose and value. I believe she was sent in part for our family, neighbors, and friends. There’s just something about her that puts a smile on everyone’s face. People I hardly know tell me they just love Annie.
Life with a child like Annie is full of trials. I am a planner and very controlling, and within a week of Annie’s birth I realized I am not in control of anything. There were so many tests and doctors appointments and challenges. I learned God is in control and I’m not—none of us are!
Watching her grow up so slowly and comparing her to other kids hurts. I worry about all the “what-ifs” of her future. Will she have friends? How much will she be able to learn? Will people be able to understand her when she speaks? There are also tons of doctors appointments and hospital stays. A routine removal of her tonsils and adenoids turned into a nine-day hospital stay.
But with Annie I have found new joy. Despite her low muscle tone, she was able to learn to nurse at two months old. Reaching her milestones takes a village—family, therapists, doctors, teachers—but when she does we all celebrate. We all worked hard for her to crawl. She was over a year old, and her therapist warned it wouldn’t happen for several months. And then one day she just did it! We have video of our whole family surrounding her and screaming and cheering as she figured it out.
Caring for Annie has bonded our family together in a way we weren’t before. So many of my fears from my pregnancy are now the things I love most about our lives. I worried before that we would have this baby forever; now I feel so lucky that as we get older, we’ll always have Annie. She’ll keep us young. I worried my older kids would be neglected and worse off because of the needs of this new sister; now my children are learning first-hand compassion and empathy. I see that they treat people differently than before—they don’t hesitate to make friends with kids with special needs—and they view their futures differently—they want to work in the medical field and help other people.
Annie’s helped us reorient our priorities. I’ve learned to live day to day. I often think of these words from Jeffrey Holland: “Don’t you quit. You keep walking. You keep trying. There is help and happiness ahead—a lot of it.” A project that used to take a day may now take us a week or two, but it doesn’t upset me. Things that we thought were important don’t feel important anymore; things that should have been important before but weren’t, now are.
Before I knew I was pregnant with Annie, our outlook at times was selfish and materialistic. Then I spent a whole pregnancy feeling really miserable, and I feel immense guilt about that. Because Babette was right—I am head over heels in love with this little girl.
I now feel like God does understand me and He knows me better than I thought. He was looking out for my family—He knew how to keep us centered, united, and closer to Him. I have greater faith in Proverbs 3:5-6: “Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.”
My whole path changed and I didn’t know that I wanted it to. None of the things I wanted before would be as fulfilling as my life now. Shortly after Annie was born, I came across a quote that perfectly describes how I feel: “Down Syndrome was an unplanned journey, but we love our tour guide.”
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Cydney lives in Colorado with her husband and four children. She fills her time being a mother, sewing, woodworking, and advocating for her daughter with special needs.