A few years ago, we found out we were expecting our fifth child. A month later, we learned it was twins, and a month after that we learned that one of them most likely had Down syndrome.
We knew that God had plans for this pregnancy, but it was a lot to take in. I remember asking God through tears, “Twins AND Down syndrome? That’s a lot, God.” After all, my husband travels for work, and I had no idea what I would do with my older four kids and the other twin if our baby needed a hospital stay, lots of medical appointments, or had other health complications common with Down syndrome.
I prayed like Jesus in Gethsemane: let this cup pass me by.
“Twins AND Down syndrome? That’s a lot, God.”
But God answered my prayers in another way: through a network of support that emerged around me. When I told my husband, he was so supportive and knew we would be fine if the baby had Down syndrome. I texted my friends and they all sent the most supportive messages. You’ve got this. God’s got this. A friend helped us through the process of finding an au pair. I connected with wonderful families of kids with Down syndrome, and read inspiring books written by parents of Down syndrome children. Coupled with my husband’s unwavering support, I was ready to welcome our twins into the world.
A few minutes into my C-section, I heard the thrilling cry of Michael, our first twin, and marveled at his impossibly sweet face. Then, the room hushed, and all I heard was my husband’s sweet voice in my ear confirming to me that “Yes, he does have Down syndrome,” while the doctors delivered our second twin, Ronan.
Then I saw Ronan and rejoiced. He was beautiful. The joy of two babies (not to mention being done with a twin pregnancy) drowned out all my fears about Down syndrome, and for the first few days we lavished in newborn baby bliss.
But Ronan struggled to eat. He wouldn’t latch and he wouldn’t take more than a few ounces in the bottle. The nurses tried, I tried, the lactation consultant tried. We went home and my husband tried, my mother-in-law tried, and the au pair tried, but it was no use. I would nurse Michael, and then painstakingly stress to get Ronan to eat even a few ounces.
When the twins were five days old, a visiting nurse came to check on us. She took the twins’ temperature. Ronan’s was 97 degrees. She laid him on my chest to help warm him, put a phone call into my pediatrician, and left.
We were scheduled for the pediatrician the next day, and after she took his temperature it was even lower. She sat down and said, “You need to go to Boston Children’s ER right now. Infants with a low body temperature indicates an infection of some kind. Where we get a fever, they get cold.”
I didn’t have time to be afraid.
All my fears about potential hospital stays, health complications, and leaving our older children came flooding back. But I didn’t have time to be afraid. We rushed home, threw some clothes in a bag for both babies and me, and left our older kids with my mother in law and our au pair as we drove our week-old twins down to Boston, an hour south of us.
Once we arrived, we watched a highly organized team of people swarm over Ronan while a young female doctor frowned in worry. “I don’t like the look of him,” she said. In less than an hour, we learned his bowels were twisting, and he was admitted to the NICU.
They suspected Ronan had Hirschsprung’s disease, and confirmed it by biopsy 24 hours later. Hirschprung’s disease is where the colon is missing the nerve cells needed to create the peristaltic motion for passing stool. Best-case scenario, only part of the colon is affected and could be surgically removed. Worst-case scenario, the entire colon is affected and our baby would live with a colostomy bag.
Ronan needed to be treated with antibiotics and get a little stronger before surgery. This meant we were in for a long hospital stay. So we prayed. We prayed and prayed. And when we couldn’t pray because we were too scared, we felt the prayers of all of those who prayed for us. God’s love first surrounded us by the love of everyone sending us messages of prayer and support, and He continued to love us in ways both big and small.
The kindness of strangers reminded me God was right there with me.
Baby Michael and I were mercifully allowed to stay in a family suite at the hospital. When they told me that my new nursing baby could stay with me, a mountain of fears were relieved. My husband could go home and work and take care of our big kids with the help of the au pair, and I could stay with the babies.
The first morning at the hospital I stood in line at the Starbucks in the hospital lobby. I was six days out from a c-section, carting a newborn around in a plexiglass bassinet, with maternity jeans falling off of me. The woman in front of me bought my coffee. ‘You look like you might need it’ she said smiling. The kindness of strangers reminded me God was right there with me.
As any mom who has to be away from her children will tell you, it is incredibly difficult to not be there to take care of your kids. But my neighbor across the street texted me: We set up a meal train for you. The relief of knowing dinner was taken care of was a powerful balm to my anxiety.
My husband sent me pictures of the wonderful dinners our friends and neighbors made for my family, and I smiled while I lay in my cinder block hospital dorm room, the warmth of others’ charitable love filling my heart.
When Ronan had been on antibiotics for a week and was less critical, Michael and I could return home and visit Ronan each day. The joy of being back with my older kids was such a relief, but the trips down to the hospital every day were hard. Michael needed to eat every 2-3 hours, and if I got stuck in traffic I had to pull over and nurse him which made the trip extremely stressful and long. Nursing in a car in an empty parking lot off the highway when you’re trying to get to your people, I discovered, is one of my least favorite activities.
When I would finally get to the hospital, I wanted to hold and help take care of Ronan. But I also had to pump for him, change Michael, talk to the doctors and specialists, feed Michael again, and try to fit in feeding myself. Then I would make the hard drive home and hope that I timed it just right to avoid the gridlock at the end of the day.
But when I got home, there was a full crock pot with Chicken Dinan or Steak Fajitas or Mexican Tortilla Soup waiting for me. I could sit and just be with my husband and big kids and hear about their day. It was incredibly touching to feel cared for through these meals. The thoughtfulness of others allowed my family to just be together in the small window we had each day.
The thoughtfulness of others allowed my family to just be together in the small window we had each day.
Ronan had surgery at 3 weeks old, and all our prayers were answered. Only a few inches at the bottom of his colon were affected by Hirschsprung’s disease. The doctor placed a G-tube in to help with feedings if they ever became difficult again. He recovered for another week, and when we were discharged, I walked from that hospital feeling like I had just come through a battle; I was grateful for victory and for the physical and spiritual support that kept us going.
If I thought the meal train was a Godsend during the month Ronan was in the hospital, it was no less helpful as we adjusted to life as a family of eight. The grace and relief that came whenever there was someone at the door with dinner felt like God’s hand holding me up, because in reality, it was.
When I tell people about this chapter in our lives, they usually say “I don’t know how you did it,” and I always give them the same answer: I didn’t do it alone. I did it with God, who shows us love and care through the charity of others.