Worthy

“We need you to call us back and come in today to discuss lab results” A missed call from a familiar number, followed by a voicemail with these words and probably a few more. Maybe the message started with Miss. Burns or included a reference to what doctors office they were calling from. The woman’s voice on the message could have been soft and caring or cold, it wouldn’t matter because I’d hear the words the same way.

It was a Friday afternoon in August. Holt, my one, almost two year old, and I had just gotten to the pool. I was trying a relatively new schedule that summer that was both forced and needed after Holt’s in-home daycare had shifted to part-time only and I had spent the last year working more than not. Holt and I were doing the dance between barely dipping our toes in the water, indulging in a snack in the lounge chair, and marveling at the giant wheel that rolled up the lane lines from swim team. As we made our way back to the lounge chair, I dug my phone out of our bag and saw the missed call and voicemail.

I was about 12 weeks pregnant with our second and I had recently opted to participate in bloodwork to check for any potential chromosomal abnormalities in baby #2. We had opted out of all testing and screening that we had the option to do so with Holt. I had a relatively uneventful first pregnancy and a relatively fast natural birth followed by a blissful first 8 weeks of becoming a mother for the first time. At 8 weeks Holt’s head circumference started to grow at a rapid rate. By 10 weeks we were in the pediatric emergency room for a CT Scan that would show hydrocephalus, excess fluid on the brain, followed by a MRI that would show a missing part of our son’s brain, the midline of his cerebellum. In its place was a cyst that was blocking his spinal fluid from draining. A moment in time that would require us to learn what Dandy Walker Malformation meant. A moment in time that seemed to ask me to dream new dreams of what being a parent looked and felt like.

There were no missed tests with Holt that would have clued us in differently to how his brain was or wasn’t developing. We had ultrasounds and it was never seen, but for our second baby I wanted more clues. What could we know before they were born that would help us prepare for their arrival?

I can still see the corner of the pool that we’re sitting beside, the chair where our belongings were strewn about. I remember some of the faces that were swimming near us that day. When I listened to that voicemail I remember feeling my whole body from the inside out. The type of feeling where you don’t know if your insides might actually explode through your skin or you might actually burst into flames because you feel so deeply that it’s like feeling to your own earth’s center and there’s one temperature there…hot. I looked at Holt, the exit, the hang pad we had created for a fun afternoon together. I packed up our things and scooped up Holt. In hindsight I am thankful that he was still too young to question why our adventure was ending after we had merely just arrived.

My next memory is calling Steve, my husband. No answer. I left a voicemail, maybe a text. My next call was to my Mom. She answered right as I was pulling up to our house. I told her about the voicemail and asked if she could come over and watch Holt so we could go to the doctor and he could have his nap at home. I remember little about what all was said except her saying she’d be there and me responding “I’m freaking out a little bit” and her saying back “I know you. It’s going to be OK.”

Steve called back and I got in touch with the doctor’s office, we had a time that our midwife was expecting us. Steve picked me up and we drove to the office together. We may have spoken, we may have been silent. Walking into the waiting room blurs now with all the other times I walked into that waiting room in the months ahead. I remember turning right, instead of left once we were called back. As we were guided into a room with two comfy arm chairs and not an exam room, any hope of the news being “easy” was washed away. They wanted us to be comfortable as we took in whatever words were about to be said.

As we sat down, our midwife across from us, I saw in her eyes care, concern, and a disappointment in that she had to say the words that came next. I flashed back to the first time I showed up for an appointment at the office, newly pregnant with baby number 2. My doctor and midwife from my pregnancy with Holt had moved and so there I was, new baby, new story, new care team. I sat in the waiting room waiting to hear my name be called. The door opened and someone walked out in scrubs, heading straight towards me. It was Meghan. Another midwife from the practice I had left, someone who knew me and knew my story. I wasn’t scheduled to see her that day but when she saw my name on the schedule, she made space to be with me as well as the doctor. We talked about Holt and how amazing he was doing. We talked about my hesitation to have another baby at all after spending the last year of my life and the first year of Holt’s trying to answer the question “am I cut out for this.”

When I looked at Meghan sitting across from us that day in August, Steve and I in semi-overstuffed arm chairs, her in a wooden chair not nearly as comfortable, I could see her knowing; her knowing of the test results that were typed out on her paper and also the knowing of the questions that I had and still asked myself about having another baby. A deep breath followed by a something-high percent chance that our baby had trisomy 21, Down syndrome. I looked at my husband, his index finger and thumb gently resting over his mouth and tears in his eyes. He was blurry through the tears in my own.

I saw so much when I looked at Steve in that moment. I saw him sitting next to me at the end of the bar at Lola’s on 8th Street near Capitol Hill where we went for our first date. It was that night he shared with me that he was a volunteer coach for the Special Olympics and had been for several years. It was the first time that I saw beyond his beautiful blue eyes and infectious smile and saw his gigantic heart. I saw him standing across from me in the hospital room after Holt’s second brain surgery as I sobbed and apologized, sure that my body had failed Holt and I done something to cause his brain not to grow. Steve stood there, Holt in his arms and just said “he’s perfect.” In that moment, in the arm chairs, I saw my partner, my best friend, the father of my children. I saw our past and our present, but for the first time since meeting him, our future was being temporarily washed away from my vision.

More deep breaths as we were told what options we had next. Options. An amniocentsis to provide a definitive yes or no to our baby’s diagnosis. The option to continue on as is being followed closely by our current providers and some others. The option to end the pregnancy.

We left the appointment, walked back through the hospital and climbed back into the car. It was late afternoon, Steve still had an appointment on his calendar and I had a teaching engagement that evening. I remember saying the options out loud again, almost just to make sure they were real and that we had heard them. I looked at Steve as he looked ahead, eyes focused on the road. I placed my hands on my belly where our baby was growing, all 47 chromosomes included. I knew our family’s story up until that moment and I knew the story that I was already rewriting for our future, the one that included our daughter. I already saw her almond eyes and the way her older brother would protect her fiercely. What I didn’t know was if Steve was able to rewrite the story the same way I was.

After arriving home, Steve would go back to work and I would keep my commitments as well, an effort by each of us to cling in some way to the life that existed before we walked into the doctor’s office that day. Much like any other day, we went off to live our lives, dream our own dreams, and come back together at the end to share them with one another and move forward again, together.