THE BEGINNING OF A FAMILY
Sam's story begins long before that cold October day in the ultrasound room. Before the long, hard days that followed his diagnosis. Before the rainy December night when our friends and family gathered to sing him a final lullaby.
Rather, our story begins in sunny, Pensacola, Florida, where I first met my husband, Chris. I was finishing up my first year of nursing school, and he was a cute senior boy I had been talking to. He was moving back to Ohio within a few months to start his doctorate degree in physical therapy, so I kind of figured our relationship would never surpass the insane amounts of texting that had become our habit. Surprisingly, the texts turned to phone calls, which grew to visits, and culminated in a fairytale morning wedding by the water in May just a few short years later.
We moved to Ohio, where I began my nursing career, starting on a hospital floor for people with heart problems. Eventually, I landed in an intensive care unit, taking care of the sickest of sick. After a childhood spent in sunshine and laughter, it was a brutal shock of reality as I walked into human suffering day after day. The people I met forced me to reckon with my own mortality and the frailty of my comfortable life. Little did I know then it would prepare me in deeper ways for my own future.
GROWING OUR FAMILY
In the midst of this chaos, our sweet Sophia Grace was born. A month early, rocking a bald head and colicky temperament, she reminded me that just because something is hard doesn't mean it's bad. I sacrificed what sleep I was getting between night shifts to hold her, feed her, love her, and I felt my own love grow even more. I have to say that it wasn't until I held my daughter for the first time that the true gravity of who she was truly fell on me. Before, I was pregnant. Then, I was a mother; and I realized that I had been a mother all along. Even my daughter was re-shaping my heart into what it needed to be for this journey.
Sophia turned one, and we began to try to build our family again. However, this time we were met with heartbreak; I miscarried just shy of three months pregnant. It was an altogether new type of pain—this loss—and it made me question my faith, God's goodness, His plans, everything. Though I don't pretend to have answers to those questions, I learned that He never left my side. He allowed that trauma to show me that I could go through hard things personally and not break. He gave me a renewed faith that I would see that child in heaven again one day. He taught me that pregnancy and life are a gift, not to be taken for granted. More lessons that I would need as my future unfolded.
After the miscarriage, our life turned upside down. We moved across the state. My husband lost his job. Multiple family health crises arose. Yet, in the middle of it all, our rainbow appeared. Two pink lines let me know that our Sam had finally come to us, after much praying and hopeful anticipation. I wish I could tell you I enjoyed the entirety of his pregnancy, but unfortunately, Sam was a handful from the very beginning. I suffered pretty awful morning sickness and various illnesses and ailments, but I tried to stay positive. This was the child we had prayed for.
LEARNING THE DIAGNOSIS AND MAKING A DECISION
We went to our twenty-week ultrasound, and if you're reading this, you probably know this part of the story all too well. The room got progressively quieter as she scanned, brow furrowed and a grimace appearing on her lips. The doctor came in to go over the results, and he said so quietly, "It appears your son has a condition called alobar holoprosencephaly, probably due to Trisomy 18. It is incompatible with life. Would you consider a termination?"
I can't honestly tell you, if I hadn't experienced all those life events I just told you about, that my answer would have been the same. Or if it had been the same, that I would have had the resolve to say it as strongly as I did. I also feel a need to tell you that if you chose differently, I have nothing but love and compassion for you. God had prepared my heart, and I heard my own voice resound in my ears as I said:
As it turned out, my obstetrician was in absolute agreement with my decision, and even commended me for it. It was such a blessing to have his support, and he quickly helped assuage any fears that I had about delivery. Sam's particular birth defect caused changes to his face. They couldn't tell me how badly he was disfigured while still in utero, so I was terrified that his face would be horrific to look at after birth.
My obstetrician assured me, having seen cases such as Sam's, saying "No matter what he looks like, you will be able to handle it. He's your son, and whether he lives six minutes or sixty years, nothing changes that."
We did a fetal MRI to confirm the diagnosis, as well as some blood tests. I already had a history of preterm labor with my daughter, so we refused the amniocentesis, not wanting to risk any time we had left. He ended up testing negative for Trisomy 18, so his final diagnosis was "isolated alobar holoprosencephaly, cause unknown". They said more than likely he would die before he was born. I was so grateful that he was kicking me all the time by that point, since I knew that meant he was still with us. He continued that kicking all the way until his birth at twenty-nine weeks.
GRIEVING WHILE CONTINUING THE PREGNANCY
I wish I could tell you that after the diagnosis and initial grief, I then enjoyed every last moment I had with my son. Unfortunately, that was not the case for me. Shortly after Sam's diagnosis, I felt buried beneath the weight of his impending loss, along with so many others of the past year, that I fell into deep depression, even briefly contemplating suicide. I can't tell you how hard that is to admit, but I need you to know that if you're there, you're not alone.
Being never able to escape from the pain, watching your belly grow and feeling like a clock is ticking down to your child's death, having strangers ask when you're due, watching friends decorate their own nursery while you're contemplating funeral costs. . . it's enough to drive even the most sane person to the edge of darkness. Thankfully, with help from counseling, my husband, and friends, I was able to cope with my depression, but it was there, nonetheless.
The hardest part was when other grieving mothers would talk about how their child's death had irrevocably changed them; how they were never the same afterwards. It all sounded so hopeless. But I remember one time talking to my mom and saying how I felt like I'd never be my happy, lighthearted self again. She took a moment and then replied, "Kelsey, I don't think you should ever regret something that gives you depth.” The idea that somehow this pain would change me for the better was the light I needed on some of those darkest days.
So, let me tell you, yes, this loss is going to color your every day. It's going to change how you view life. You're going to cry when you sing, but that's because songs have meaning that they never had before. You're going to have a lot of fear and anxiety surrounding pregnancy and babies, but that's because you have a renewed appreciation for how precious they truly are. It's going to be a lot harder to say that God is good, but when you do say it, it's going to mean a heck of a lot more.
They're not wrong when they say you're never going to be the same, but eventually, one day, you'll see that this pain made you stronger than ever before. The pain is going to evolve; it won't always be like a sharp, hemorrhaging wound. After the initial shock, it's going to feel like a dull bruise most days—painful when touched. You'll have good days and bad days, but slowly and surely, the good days are going rise more and more. So, you may not be the same, but there is healing for you. You will smile again, laugh, and there will be days when the sun seems to shine even more brightly than before. And, believe it or not, there is going to be a day when you can say your child's name. You're going to breathe again, and it's going to be okay. Today may not be that day for you. That's okay. But, holdfast to any hope I can give you from a mom who has been there.
MEETING OUR SON AND FINDING PEACE
My son was born after a whirlwind labor, and he lived fifteen minutes in my arms. Those fifteen minutes were raw, beautiful, and holy. Looking back, I can confidently say that dreading the future was so much worse than actually living it. God gave me so much grace, moment by moment, to endure the hardest times and to laugh during the good ones. It's been a little over six months since Sam was born, and as a family, we are so much closer now. It was amazing to see how our friends rallied around to help and love on us, and our relationships with them strengthened as well.
I’m so grateful for my son's life. While I would obviously have written my own story differently, I'm so glad that God blessed us with Sam. Because Sam lived, I have loved deeper, stronger, and more openly than ever possible before. People have heard the gospel and that God loves them because of my son. I've discovered a love of writing as I have used my blog to help process his life and death. Even in these early months, I'm seeing so many pieces come together that I never thought possible, all because of Sam.
So, if you're reading this and walking this journey, I implore you: hold onto hope. Use the resources found here at Carrying To Term to encourage you. Reach out for help whenever you need it. Don't compare your grief to others. Know that there are many of us moms who would love to help you in whatever way we can. And, there's a God in heaven who loves you more than you can ever fathom, and He has a plan for your child. That was the most comforting thought for me during Sam's life, and I hope it will be for you as well.
“For you formed my inward parts; you knitted me together in my mother's womb. I will praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.” - Psalm 139:13-16
You can read more of Kelsey’s story and see pictures of Sam at miraclesenough.home.blog/.