My story of being a mom to a child with a birth defect.
I will never forget the memory of seeing my child on-screen in that grainy, black-and-white image for the very first time. Though it dims in comparison with the squalling, flailing, covered-in-after-birth memory of meeting him, it never fades. How could I possibly forget that feeling of my heart missing a beat, my eyes welling up with tears at the realization that there is an actual human being inside of me?
I can’t forget it. I won’t.
But unlike the memory of seeing my daughter for the first time, I will always recall the magical moment I saw my son through a filter of fear: the gray of the unknown.
The ultra-sound technician got quiet as she rapidly tapped and clicked her control pad to capture images of our unborn baby. She’d had a stern demeanor from the outset of our appointment, but her furrowed brow had deepened, leaving her face without any reflection of the joy she surely took in her profession. Whereas before there was an electricity of excitement in the silence, the air shifted and suddenly, the silence felt ominous. She was focusing on his head, I thought. That was the last image I could discern, and as far as I could tell, it hadn’t changed; only the angle was different.
I held my breath a little, waiting anxiously for her to say something, anything.
“Is everything okay?” I finally breathed. She turned to look at me but didn’t smile.
“The doctor will be in to go over the results with you. I’m just finishing up and then she’ll be in shortly,” she replied, her voice entirely devoid of emotion; strictly professional.
I turned to look at my husband and he gave me an encouraging smile. “It’s fine,” he whispered. I took a breath. “You shouldn’t worry so much,” he chuckled, smiling affectionately. Tears pricked at my eyes as I smiled back.
The technician finished her work, printed off a few images for us, and left, closing the door firmly behind her. I stared at the black and white images before me, searching for whatever had caused the shift in the room. But to my untrained eye, it looked like nothing more than the blurry, black-and-white profile of my baby. How I wanted that to be true.
Please, God, please let him be okay, I prayed.
A gentle knock sounded at the door, and a young doctor entered. She had a smile that lit up her eyes and gave her the appearance of being younger than she was. Her curly hair was muscled into a ponytail, but stubbornly remained unruly in appearance.
She introduced herself, we shook hands, and I impatiently waited for the niceties to be over with, so she could tell us our child was fine and I had been worrying over nothing. But she didn’t say that. Instead, she said, “Well, your baby is growing well, and everything looks good, except he does have a cleft lip.” A beat for us to process this, and then, “We’d like to refer you to the University so they can confirm. Their technology is better suited for looking at those details, and they may be able to tell you if the palate is involved.”
My eyes were wide, I could feel it. Part of me was relieved. Of all the horrible scenarios I’d imagined, this was barely anything. And yet, was it? I didn’t know what all the implications of this were. Wave after wave of questions, fears, worry, and oh, the guilt.
This was my fault!
The doctor looked at me, locking eyes with me and holding me captive with her earnestness. “I want you to know, this is not your fault. We may be wrong; nothing is certain until he gets here, but the specialists at the University will be able to give you more clarity on the situation.”
I nodded, trying to swallow the lump in my throat. Did I do this? Is this because of that week I missed taking my prenatals? What if this is because of the birth control we used! Is God punishing me for everything I’ve done wrong? all the people I’ve hurt? What is wrong with me? This is so small! But I don’t want people to think he looks funny, make fun of him. What if I love him less because of how he looks? Oh my gosh, I am a terrible mom!
I forced myself to drown out the growing roar of unanswered questions and focus on what the doctor was saying. “Do you have any questions?” she concluded. I shook my head and looked at my husband for the first time since the doctor had walked in. His earlier, confident smile was gone and, in its place, a look of bewilderment. He was just staring at me, looking to me to make sense of the situation.
But I couldn’t.
Over the next several months, our preparations for our baby boy were no longer the happy, careless tasks of clothes shopping, nursery decorating, and name-storming. Now, they included a flurry of appointments: consultations with plastic surgeons, obstetricians, more ultrasound technicians, financial aid clerks, and the occasional run-in with a helpful parent we’d met at the cleft clinic at the U. The hour and a half drive to the University hospital became as second nature as a trip to the grocery store.
And over and over, throughout every appointment, despite numerous assurances that the opposite was true, all I could think was that it was my fault. The mom guilt was stifling me, and, despite the happy, positive face I put on for others, it was all I could do to get out of bed in the mornings. Fear and guilt, guilt and fear, weighing me down to the point where it was easier to go back to sleep than face these emotions one more time. Just a few more hours, then I’ll get up.
My two-year-old lived on cereal and cartoons during those months.
And then, one day, my reality shifted. The immense burden I’d placed on myself to influence or determine the well-being of this unborn child was lifted because I finally realized the truth: it truly was not my fault!
December 3rd, 2017. Sarah Young’s Devotional, “Jesus Calling” (which you can purchase here) seemed as though it was written for me that day.
“Do not be surprised by the fiery attacks on your mind,” I read. “When you struggle to find Me and to live in My Peace, don’t let discouragement set in. You are engaged in massive warfare, spiritually speaking. … When you find yourself in the thick of battle, call upon My Name: “Jesus, help me!” At that instant, the battle becomes Mine; your role is simply to trust Me as I fight for you.” (page 354)
I began to think about all the times the fear that I might love my son less because of his “defect” had rendered me paralyzed, guilt-ridden. And I thought about how I loved my husband not because of how he looked, but because of who he was. And then I thought about the way Jesus has always loved me, and how that has absolutely nothing to do with appearance, a medical diagnosis, or my actions, and everything to do with what He has done for me. I had been letting fear rob me of the joy Jesus had given me for life.
That day, I realized that the battle was not my own any more than the power to change my son’s diagnosis was my own. I surrendered all of me, and the life inside me, to my Savior. Those memories of mistakes I’d made, the pressure I’d put on myself by heaping guilt on my incapable shoulders, all of it wiped away by that one, powerful truth.
“And [sinners] is what some of you were. But you were washed, you were sanctified, you were justified in the name of the Lord Jesus Christ and by the Spirit of our God.” – 1 Corinthians 6:11
Yes, we are guilty. Yes, every ounce of that mom guilt is real and justified, because we are imperfect people living imperfect lives. But Jesus is perfect, and through him we are justified, and that is the higher power that absolutely drowns out the mom guilt. Thank God I don’t have to live with that weight anymore!
For the record, my son has defied the odds, and despite his cleft lip, he is nursing well, growing well, and smiles bigger and more beautifully than any “normal” baby I’ve ever seen (yes, I’m biased). His palate was not involved, praise God! But for many babies, this is not the case. For some reason, God chose to allow my baby to live a life without the struggles that children with cleft palates face. I don’t understand it, but I am surrendering to him all the same.
Thank you for reading today and supporting me during this wild ride. I love you!
“For you created my inmost being;
you knit me together in my mother’s womb.
(14) I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
(15) My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.”
For more information on cleft lips and palates, visit cleftline.org