Fearfully and Wonderfully Made
13 For you created my inmost being;
Psalm 139
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.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
I came upon these verses a week ago in the devotional Vinayak and I have been reading together. It stuck with me for two reasons. First, the fact that God knew, from the moment of Mirari’s existence, from that split second when the 18th chromosome tripled throughout all his cells and determined his life span, He knew all the days that He had ordained for Mirari. Heck, God knew and ordained those days for our Mirari even before Vinayak and I had thought of our future children. And in the womb, as Mirari grew, as the extra third 18th chromosome decided how he’d look, how he’d act, how his organs would be, and how long he’d live, God was a part of that process – forming him and knitting him together into the wonderfully and fearfully made little boy that Mirari was.
Which leads to the second fact that stuck with me – that Mirari was and is fearfully and wonderfully made with trisomy 18. That all the “normal” parts of him, all the normal sized and numbered organs, features, limbs, toes, and fingers were just as fearfully and wonderfully made as the parts of him that appeared the way they did due to the extra chromosome – the cutely protracted wrists; the overlapping fingers on his left hand that often looked like he was making a ‘rock-on’ sign in the ultrasounds; the little rockerbottom feet that I loved feeling kick inside; the low set, differently shaped ears; and his puffy little eyes. All of his features were wonderfully and fearfully made – and we were blessed to see it all when we held him in our arms.
The fact that Mirari was fearfully and wonderfully made has challenged me in my reflections on future pregnancies. Since the day we knew of Mirari’s existence, Vinayak and I had prayed for two things – a healthy baby and a healthy pregnancy. Whenever people would ask me what I wanted – a boy or a girl, I said it didn’t matter to me as long as the baby was healthy. But we did not have what people would say is a healthy baby. And ever since learning of Mirari’s diagnosis and holding him as he passed away in my arms, I’ve naturally had the fear of having another baby pass away in the future, of having another “unhealthy” baby. And so in the months following Mirari’s diagnosis and even the first few months after his death, all I thought I’d be praying for in our future pregnancies was for a healthy baby. As long as baby is healthy. But reading those words now, in light of Mirari and his life, I am rethinking that – rethinking the unspoken condition placed in that sentence: it doesn’t matter, as long as baby is healthy.
Such innocent and well-intentioned words, but now ones that I cannot hear or read without my heart breaking a little and that I cannot say because it no longer holds true for me. Because what does that mean? What happens if baby is not healthy? What was it that I actually wanted when I said those words? Is it that I don’t want to have to bury another child? But when you’re part of the loss community, you know that just because you have a “healthy” baby, it doesn’t mean they won’t later die from something else, and just because you have an “unhealthy” child, it doesn’t mean you will immediately bury them (there are plenty of children with trisomy 18 who have beat the odds and lived for years). For me, I think the mentality behind those words came down to a mentality of convenience – wanting an easier life for myself and for my child. I don’t want to go through the heartache again of wondering how long my child will live, or what type of life will he/she live, will they struggle to breathe, will they have learning disabilities – I want to have it easy in parenting, to have children who will just fit ‘the norm’. And I don’t want my child to suffer ridicule, or have a hard time fitting in, or have a hard life because of the way society labels or perceives them. But what’s the underlying value and belief system under that? A life without suffering, pain, heartache, and inconveniences is a better life worth living.
But Mirari has turned that on its head. Mirari was not the healthy child we prayed for, no, Mirari was better than that, he was the special, beautiful, and fearfully and wonderfully created son we did not know our hearts and our lives needed, but that God in His love and grace did. Mirari was loved not despite his trisomy 18 or despite his unhealthy state but in fact, we loved him perhaps more because of those very things. And if Mirari had lived longer with us, we would have happily invited every “inconvenience” into our lives in order to love him, care for him, parent him, and sustain him all the days of his life.
Mirari has challenged my underlying beliefs and assumptions that healthy babies are “better” babies to be parented, that healthy babies are more worth Vinayak’s and my time, that healthy babies are the babies to be proud of, that healthy babies are the key to my happiness and joy in parenting, that healthy babies make parenting and loving easier, and that parents with unhealthy babies are unfortunate. Despite reading and knowing Psalm 139 all my life, and believing that all babies were fearfully and wonderfully made, it was not until God gifted us Mirari that I now realize how deeply rooted my wrong assumptions and beliefs were. Mirari was not the healthy baby we prayed for. Mirari’s value and worth in our eyes had nothing to do with his trisomy 18 or whether he was healthy, and in fact, his impact on our lives and our faith have perhaps been a hundredfold what it would have been had he not had trisomy 18. It is unfortunate that our Mirari passed away so soon after birth, but being able to parent him and learn from him was not a misfortune, but a blessing we would have never imagined.
So I struggle now to pray for our next baby to be a healthy baby, or to say “as long as baby is healthy,” because when I say those things now, I feel that it belittles Mirari and the astounding ways he has deepened and shaped my love, my faith, my compassion, and my life. To say “as long as baby is healthy, it doesn’t matter” states a preference – a preference for a healthy baby. And preference implicitly shows one’s values and the potential disappointment that may follow when preference is not met. It’s odd but what really causes me to pause sometimes is that whenever I think or read “as long as baby is healthy”, I think of Mirari hearing that from heaven, and wondering and asking me one day if he was a disappointment because we had prayed and hoped for a healthy baby and he was not one. And it breaks my heart because yes, I had prayed for that and hoped that my baby would be a certain way and that I wouldn’t have to live with pain or hardship, all of which are highly inconvenient, but how wrong I was because what I’ve come to realize is that it doesn’t matter if baby is healthy or unhealthy, they are all joys, all blessings, and all gifts from God in whatever form they come in – all fearfully and wonderfully made. Children aren’t for our convenience or our expectations; the beauty of parenting is learning to selflessly love and give all of yourself to a little being and watch him/her flourish in and for God’s kingdom. And Mirari taught us that.
So while I will always hope and pray that God allows Vinayak and me to parent children earthside, I no longer want to pray that God gives us a healthy baby, because no matter how our future children are, I want to be able to honestly tell them that they were exactly what we prayed and hoped for. And what Mirari has shown me is that unhealthy or healthy did not matter in the end – the love was incredible, the joys irreplaceable, and the pain worthwhile.
