I believe that I shall look upon the goodness of the Lord
in the land of the living!
Wait for the Lord;
be strong, and let your heart take courage;
wait for the Lord!
~ Psalm 27:13-14
What happens when time runs short for a child? How do we wait?
On Monday, July 8, Jon and I visited a high-risk pregnancy doctor at an exclusively high-risk practice in Denver after receiving a referral from Dr. M. We met Dr. L, a friendly man in his 60s, who introduced himself. Then he sat at the ultrasound monitor, explaining that he was going to show us some things. But then he turned back to us, looking directly at me.
“The first thing I need to tell you,” said Dr. L, “is that you didn’t do anything wrong. You didn’t use the wrong shampoo. You didn’t stand too close to the microwave. You didn’t eat the wrong thing. You didn’t cause this.
“And the second thing,” he said more quietly, “is that there’s nothing we can do.”
That’s when all of our fears from the prior month were confirmed. Our son, Christian, had less than a five percent chance of survival, and he would probably not live long in my womb. Dr. L told us to go back to Dr. M for checks at least every two weeks. If you were my daughter,” he said, “I’d probably fit you in once a week. Just to see if Baby is still alive.” We spoke about another high-risk appointment in a month or so, maybe even meeting with a cardiologist, but both Jon and I felt like that talk was perfunctory, a going-through-the-motions. Neither of us felt like Dr. L thought we would need that appointment.
At the front desk, as the receptionist and I discussed dates and times, I was acutely aware of the mothers waiting behind me. I tried to speak calmly, normally. The last thing they needed was to see a distraught pregnant woman, a fulfillment of their own fears. And the last thing I wanted, at that moment, was to be that mom, the one who’d just received heart-shattering news.
So what did we do? Jon and I decided that, as long as I felt physically able, we would to try to maintain our normal routine. This would help us cope, it would help our other children, and it would give Christian what we hoped was a little bit of normal life. The day after our meeting with Dr. L, I took the kids to a parade. It was jarring, and unreal, but it was also life. I watched the little ones run for thrown candy and mesmerizingly watch four-wheelers and tractors and floats. It was sunny and warm. We were together.
We kept on. During quiet time when some of our kids napped and others quietly played or read books, I read a book about continuing pregnancy when Baby is not expected to live. I usually cried. I cried in the shower and at night as I prayed. I would talk to Christian. “I’m sorry Mommy is crying so much. I love you.” And I talked to him about his siblings. “Boy, your big sister sure is loud sometimes, right? She loves her blanket. You hear her yelling about it a lot. She likes to snuggle with you.” She did, and she does. “‘Nuggle?” she says. “‘Nuggle?” Then she climbs over me with her blanket, her Dida, nestles right above my belly, and comfortingly puts her finger in her mouth.
During the other times of the day, right after the news, life was quietly blessed. The kids and I sat on the patio swing or porch rockers, sometimes talking, sometimes reading, sometimes just sitting. We went swimming. We visited with friends at parks and on a few playdates. We are with generous friends who brought us food. We went on walks together. We sang songs. We watched movies together and ate ice cream and popcorn. We read books like Mike Mulligan and His Steam Shovel. We went to the library. We laughed together when Jon would wrestle with the kids, them screaming in glee. We prayed together and read Psalms. We went to church and received Jesus together. We snuggled a lot.
I would get emotional sometimes, and occasionally the kids noticed. “I’m just sad because I’m thinking about Baby Christian,” I would say. “But I’m glad we have time together.” Unfailingly, they would speak of how they loved him and prayed for him. Sometimes they would just hug me, and in hugging me, they would hug him.
At sixteen weeks, a week and a day after we met with Dr. L, I dressed up as though for church and went to see Dr. M. to see if our Christian was still alive. Jon came, too. We spoke together with Dr. M of what will likely happen, which includes induction after finding out Christian’s heart stops beating, to me suddenly going into labor with no warning. Finally, I climbed up on the table, and Dr. M got out the Doppler. I expected to hear nothing–no heartbeat. I expected to hear that our son was dead. This is what I wrote after that visit.
“The relief and joy at hearing our son’s heartbeat–I can hardly describe it. Hours later, I’m still joyfully incredulous, delirious on the high of knowing he is still alive. Our son is still alive. Every moment is precious. Yes, if I think about what will probably happen, and soon, I am terrified. At the same time, I was reminded today that only God knows our times, and they are in His hands. I pray we can cherish every moment, and every day, that he is with us.”
Outside of the doctor visits, life was–I don’t want to say simple, but it was simple. Eating. Drinking. Thinking. Talking. Chores. Visits. So often, simple moments were charged. The hidden thought was always there: this is probably one of the last times/the only time Christian will be here for this. Playing Horse with our rising fourth-grader and laughing at how bad Mom was at taking shots. Poking toes in the sandbox. Grocery shopping. Brushing the girls’ hair. Tickling the little boys before bed. Talking on the phone in the kitchen. Every day, and every week was poignant, but mostly in a cherishing kind of way. This time is special. Only occasionally would I fall apart, thinking of what would never be. Seeing a plane pass overhead on a drive home and thinking, “He will never be a pilot.” Tousling my eldest boy’s unkept, sun-lightened hair and thinking, “He will never stand next to me like this.” The tears would run and run down my face the way they are running now. But I needed those moments like I needed the crazy herding kids “where-are-your-shoes-we-need-to-go-NOW” moments. They were, and are, all tied together.
At seventeen weeks, last week, I experienced some cramping and spotting prior to my appointment. I went in, again with Jon, fully expecting to hear no heartbeat. Once again, Christian surprised me. That time, I was shocked–actually dumbfounded–that he was still alive. Once again, we had an ultrasound to see our son.
“See his feet here?” Dr. M pointed out. We marveled at his tiny toes. But I could see that something wasn’t quite right. “You can also see how they’re swollen,” she went on gently. Our son has been slowly swelling with excess fluid, most likely because his heart isn’t strong enough. It’s like congestive heart failure in adults, who deal with bloating and water retention. I had worried about pain for him and asked Dr. M before about that, not sure if I even wanted to hear the answer. What could we even do about it? But she had explained that as a baby in utero, Christian’s nervous system wasn’t fully developed yet, so he likely wasn’t feeling pain. “Also, this is his normal,” she said. “He’s never known anything different.” As I looked at his feet, for the first time I thought, You need heaven.
Yesterday. Another week, another appointment. We were silly, waiting with the big boys who’d just had dentist appointments, telling them a story about me that made them embarrassed, grinning, and acting like they didn’t want to hear any more. They stayed in the waiting room when Jon and I went back.
Instead of the Doppler first, due to a nurse shortage, we had an ultrasound. We saw Christian right away, a white figure moving in the black on the screen. His heart thumped. Da-dum. A pause. Da-dum. Another pause, a little longer. Da-dum.
Both Jon and I thought, “Maybe Dr. M isn’t holding the wand right.” We all watched Christian move for a moment, the lines from the erratic beating creating a messy pattern below him, the sound of his heartbeat a pausing, uncertain staccato-like sound. Then Dr. M said quietly, “So you can see how his heartbeat is irregular.” My eyes blurred, and tears ran down my cheeks.
This was stark and real. Christian’s slowing heart was telling us the end of his time on earth was fast approaching its end, and though we’d expected this, I suddenly ached, almost gasping. No! Not yet! my heart screamed.
I pulled it together. In spurts, I managed to ask, “Is there any way to know how long he could make it?” Dr. M was already shaking her head. “His heartbeat could have been irregular before, and we just missed it. Or it could have just started its irregularity. He could last a week or just a day–we don’t know.”
That happened yesterday, at our third weekly appointment since our meeting with the high-risk doctor in Denver. Today, I will see Dr. M again, to see if Christian is with us. If he is, I will go in more regularly. I no longer feel comfortable with weekly checks. I know we don’t have that much time.
If Christian has died, between yesterday and today, I will be induced to go into labor, and the last part of Christian’s life on this earth will commence. This has all been so surreal and yet real at the same time. I don’t really want to sleep–I want to be awake as long as he is with us. As I write this, I think I just felt him kick. That started last week–the fluttering kicks of his quickening. I never thought I’d experience that. It is an extra gift, just as he is.
After the appointment yesterday, through my choking sobs, I spoke to Christian. “You’re going home soon, Baby. Home to Jesus. He loves you more than all of us combined.” He died so Christian will live. His body will be perfected and on the last day, he will rise with a terrifically strong heart. The kids gave me hugs last night as we told them Christian’s time was short with us. “Tell him you’ll see him again,” I said. “We love you, Baby!” our five-year-old yelled. “See you in heaven!”
So we wait now, not knowing what today will bring. We wait knowing while our time here in earth is short, we will live forever in Jesus. There with Him, we will have all the time in the heavens. And He will wipe every tear from our eyes.