When I found out I was pregnant with Eli, I held my breath. Just 6 months earlier, my husband and I endured the heartbreak of losing a pregnancy and I was terrified of going through that again. So I prayed. A lot.
I started bleeding shortly after testing positive. That was reason enough for me to worry, and apparently that was enough to prompt my doctor to see me several times a week in the beginning. The first blood test didn’t bring good news–my hormone levels were low. We would need to keep an eye on things to make sure they increased like they were supposed to. It seemed like I was at work every time my lab results came back. I remember the wave of emotions and crying with every call, either from fear or relief. Each time I would start bleeding again, I would panic on the inside and cry on the outside. I would sit with my friends at work, and they would hand me tissues, hug me, pray for me and with me. I was so afraid to get excited, but eventually, as the weeks passed and my belly grew (quickly–I was in maternity pants by 7 weeks!), I couldn’t conceal my joy. Our closest friends and family knew first, but we didn’t tell everyone right away–we shared the news slowly over the first 10 or so weeks.
And then at 14 weeks, my doctor offered me the quad screen. It was something my husband and I declined during my first pregnancy, confident that nothing could change our minds about having our baby. With this pregnancy, though, I felt different. Older. “Wiser.” Seasoned. I still didn’t think I would ever terminate a pregnancy, but after going through a miscarriage, I thought about things with a new perspective. Namely, I was aware that certain treatment options were available for some conditions diagnosed prenatally, particularly for spina bifida. If there was something we could do for our baby even before it was born, I wanted to know and I wanted to do it.
My husband wasn’t convinced, but I consented. At 16 weeks, the results came back abnormal–the test showed I was only 6 weeks pregnant even though I was 14 weeks when I was tested. I went into silent panic mode again. I didn’t want anyone else, especially my family, to know how scared I was (but I’m sure it was evident). Was it anencephaly or Trisomy 18, both considered to be “incompatible with life?” Was it Down syndrome or spina bifida? I could live with those, I told myself. On our doctor’s recommendation, we opted for another quad screen rather than an amnio. Sometimes, she told us, those kind of results just mean the test was done too early.
Still, while we waited for those results, my husband and I had many discussions. I sobbed through almost every shower. I cried in the car driving anywhere. I prayed harder than I had ever prayed to a God I had given up on. I wondered if maybe those choosing to terminate when faced with something like this were really the strong ones. I wondered if having an abortion would be the most merciful thing I could do for that little soul. I wondered if bringing a child into the world just for it to die would be cruel and inhumane. I admitted that I was thinking about this to only a few people closest to me. I would pray through my tears about how I didn’t know what to do. “Please, God,” I prayed, “I can handle Down syndrome. I can handle spina bifida. I can’t handle making this choice.” I feared for my own life, my own health and safety–what if it meant my life was in jeopardy? What would that mean for our daughter–what would happen to her if something happened to me?
I read voraciously, trying to learn everything I could. I wanted to approach this rationally, with a level head. Ha! What was I thinking?? Nevermind the hormones, this was an emotional ordeal. But then I realized something–it wasn’t my decision to make. All I wanted in my heart was to continue my pregnancy no matter what. I already loved my baby–nothing could change that. I do believe my worrying was motivated by that inherent love for my baby, and not by fear. Ok, maybe a little bit by fear. But I realized that the best thing I could do for both of my children was to do everything I could to give this precious little soul a chance at life. I decided it might be considered cowardly by some, but I would do nothing but take care of myself and my unborn baby, no matter the outcome. There would be no termination, no early induction. Come what may, I was in this for the long haul and I was prepared to surrender to the plan, God’s plan. After all, we had prayed for this baby and God had answered our prayers.
Finally, the test was back–it was fine. No elevated risk for anything. No Down syndrome. No spina bifida, no Trisomy 18, no anencephaly. I cried tears of joy and I took a deep breath. And I made it over a few more hurdles that pregnancy put in my path, each time wondering how much more we could take before something really big happened.
By the end of my pregnancy, I think I had really pushed most of that worry to the back of my mind, but it was always there. I kept telling my husband that our baby was coming early, but I would shrug it off when other people would suggest that. A coworker even predicted Eli would be born on Christmas. Nonsense.
And then Eli WAS born on Christmas–my favorite holiday–with his grand surprise. And I remembered those prayers from early in the pregnancy: “Please, God, I can handle Down syndrome…” And it wasn’t such a surprise after all.
His diagnosis was unexpected. But I never wasted a minute being disappointed with him; I never felt disappointed that my little boy has Down syndrome. I had questions–at first, I kept asking how we missed it. I felt guilty, like we could have been more prepared for him if only we had known. I worried immediately that his sister would resent him, and I verbalized that fear through hot tears. My brain went into overdrive–I asked right away about services from the county, I worried about going back to work, I worried about child care. I worried because he was being whisked away from me and taken to Children’s Hospital and I couldn’t go with him (more on that later).
But as I held him, I knew he was the baby I had always loved. That every kick and every hiccup–it was always him. He didn’t just all of a sudden get Down syndrome when he was born–he’d had it all along, and I had loved him all along too. I had already, long ago, fallen head-over-heels in love with this precious soul. Even later, when the hospital staff told me it was okay to grieve the loss of what I thought our baby would be, that just never felt right. I understand and respect that it absolutely feels right for some other families; it just never felt right for me. Even when the neonatologist confirmed the diagnosis, put his hand on my back, and told me it was ok to cry, it didn’t feel right. I did cry, but I think I cried out of desperation because I kept saying through my tears that I wasn’t disappointed. I was so desperate for them to know that I wasn’t disappointed–what did I have to be so disappointed about anyway? So what that my son has Down syndrome? So what that he has medical needs that require surgery? He’s going to be ok. Yeah, we have a long road ahead of us, but he’s going to be ok. And he’s beautiful. Perfect even. The baby we prayed for. The baby we loved before he was even born.
Today, five months later, I absolutely can’t wrap my brain around where I was from weeks 14-18 of my pregnancy. I can’t wrap my brain around what I thought, in desperation, might have been best for my son. He is, like his sister, the greatest joy of my life. He is nothing short of a blessing. He would most certainly not be better off dead (there is a pic with this phrase circulating social media). Every time I look at my son I wonder how we ever got along without him. I wonder now how we came to believe that certain things are a choice? I wonder why 90% of babies diagnosed with Down syndrome prenatally are aborted? Babies like my son. Simply because they are perceived as less than perfect. Aren’t we all?
I look at my son and I marvel at him. I think he is as perfect as I have always believed my daughter to be. Their existence, for me, proves the divine. I think about the families we have met since we started this journey on Christmas Day and I can’t believe our good fortune! I somehow find my way to blogs like the one about Baby Nora and I am so inspired by their faith–if only I had been so faithful back in those scary early weeks of my pregnancy. Or the blog about Baby Noah and I know we’re not alone in this. I see the accomplishments of Eli’s new friends and my heart swells with pride for them. I respect and admire their parents. I pinch myself that they have been brought into our lives–how did we get so blessed to meet all of these wonderful people??
Today, my faith is stronger than ever. I’m an intelligent, educated person. I believe in science. And I also believe in God. Because I’ve seen His works in my life, over and over again. Tonight, I will go to bed with a grateful heart. This is the hardest, but HAPPIEST, time of my life so far. I have two amazing kids (more about my daughter later–I can’t wait to tell you about her!), a great husband, two goofy dogs, a roof over my head, and food in my fridge. Life. Is. Good.