All in Down syndrome
It was a year ago today that we entered what would become one of the most difficult and trying experiences of our lives. The sun shined brightly that 2nd day of September, and I was 30 weeks pregnant, my abdomen swollen with life. For all intents and purposes, life was normal…except that it wasn’t.
I have a friend whose baby has Down syndrome. Her little girl is about four months older than Alisa. We met through social media, and our friendship formed quickly into a bond of understanding and camaraderie as we both journeyed on this path we did not choose. We have since met in person, but the majority of our interactions have taken place through emails and text messages.
Early on, when Alisa was still in her newborn stage, I wrote to my friend about the struggle of my deep and abiding love for my baby, but also the deep and overwhelming grief I felt in her diagnosis. The grieving would come in waves so that some days were peaceful, while others were filled with sadness. My friend understood these feelings because she, too, was walking the same road. On that day in that particular email, I told my friend how not a day had gone by that I did not think of or see Down syndrome in Alisa.
It was about a year ago, now, when we first learned that there was possibly something wrong in my pregnancy. On that sunny Friday morning in April, I traveled to Dallas alone for my 12-week pregnancy checkup. Trey stayed home with Kate, and I was looking forward to eating at Chuy’s by myself after the appointment. It was to be a routine checkup, but it became very un-routine when when my obstetrician couldn’t find the baby’s heartbeat. We walked down two rooms down to have a sonogram performed, and once the sono tech placed the wand on my gel-covered abdomen, I was quickly relieved to see and hear a strong heartbeat on the screen. Only moments later, though, I found myself swimming in confusion as both my doctor and the song tech discussed with me a thickened nuchal translucency on the baby’s neck, genetic testing, and a possible chromosome abnormality.
I left that appointment troubled, but still hopeful. Surely nothing is wrong, I thought.This type of thing doesn’t happen to me! On the Friday afternoon before Mother’s Day, though, when I was just 14-weeks pregnant, my obstetrician called to inform us that our unborn baby (a girl!) had screened positive for trisomy 21. This meant that we could assume with very strong statistical accuracy that our baby had Down syndrome.
I sit here this morning as drops of fresh rain dance upon our aluminum rooftop. The coffee in my mug has gone nearly cold after sitting by my side for a while, but I will remedy that soon enough with a fresh cup from the French press. On the other side of our home, my family still rests. I nursed Alisa in the early hours of the morning, and she sleeps in my bed now, her stomach warmed and full. I carry my bucket to the wellspring of life, drawing the waters of eternal, soul-quenching salvation. I drink of the Living Water of Christ.
Have you ever experienced that unnerving feeling in your spirit that something isn’t right? No matter how hard you try to ignore it or to snuff it out, the feeling is persistent and insistent.
I hate that feeling.
Last week, I loaded Alisa in the minivan and took her to an appointment with a pediatric ophthalmologist. We had been waiting to see a doctor for her eyes. For the last month or so, we noticed that Alisa’s eyesight did not seem to be what we’d expect at this point. Lack of eye contact and little eye tracking were among the other outward symptoms prompting that feeling of discomfort to arise within me. As a parent, I’m not sure anything is more unnerving than realizing something might not be working correctly with your child’s eyes.
“The Lord is near to the brokenhearted and saves the crushed in spirit.” Psalm 34:18
Near the end of my pregnancy, the specialist who did my weekly sonograms at the hospital performed a 3D ultrasound for me. I didn’t tell her why I asked for one, but I desperately wanted to see Alisa’s face to search for any features of Down syndrome. I needed to see just to prepare myself for her birth. One of the nurses I had become especially close to wanted to be a part of the sonogram, so she walked down the hall with me early that morning. While we were waiting for the machine to warm up, the nurse, who had just looked at my chart, commented that she’d seen Alisa had a cyst on her brain earlier in gestation. She’d never heard of that type of cyst and asked what it meant. The fact that Alisa had anything abnormal in her brain at any point was news to me.
