“Your daughter is going to live; I am so sorry.”
These are the first words the surprised doctor uttered to the parents of Judy Squier on the day of her birth. Born in a time before the technology and convenience of sonograms existed, Judy’s condition of proximal femoral focal deficiency went undetected throughout her mother’s pregnancy. Judy emerged from her mother’s womb on that day with grossly evident birth defects, including a webbed left hand and two undeveloped legs. In her book His Majesty in Brokenness, Judy tells her story, starting with her shocking entrance into the world and how her parents overcame grief and heartache, committing themselves to doing all they could for their daughter and her broken body. Judy shares many of her struggles as she also identifies God’s goodness and presence throughout a lifetime of disabilities, hospitalizations, and heartache.
When I was in the hospital on bed rest, I received sonograms twice a week to check Alisa’s growth and well-being in the womb. While normally sonograms are an exciting experience for a pregnant woman, these sonograms held a mixture of both awe and fear for me. At the end of each sonogram, the nurse practitioner or specialist would print a picture for me to take back to my hospital room. Every single time, I would glimpse at the black and white profile of my daughter, then I would quickly look away as I made the long walk back to my room. You see, for most parents, they look at a sonogram picture with excitement as they envision what their child will look like and be like after birth. But for me, every sonogram picture offered me the opportunity to scrutinize with fear what my daughter might look like and be like if she had Down syndrome. There were so many unknowns concerning her health, and those pictures invited my mind to imagine the worst. Once in my room, I tucked most of the pictures away in a book for safekeeping, but also so I could not see them and be reminded to think on what possibilities awaited us at the end of our pregnancy.
When Alisa was born, her Down syndrome features were very strong. She was precious and beautiful in my eyes, but I also could not deny the fear and sadness I also felt. In our hospital room, Trey and I marveled together at the wonder of our new daughter and wept together for her reality. There is this dream every parent has for their children, that life will be easy and safe and that they will excel, and we had to grieve the loss of this dream as we wrapped our minds around an unknown future. While many of those physical features have softened over time, the fact remains that Alisa will have various struggles in her life as a result of trisomy 21.
At this point, I am almost three months into this experience of being a parent to a child with special needs. Some of the things I currently love include, but are not limited to, smelling Alisa’s skin, watching Alisa learn to smile and coo, and nursing Alisa throughout the day and, sometimes, the night (she's a great sleeper!). Interestingly, these are the same things I cherished with our firstborn daughter, Kate, when she was a baby. I am so very proud of both my daughters, and they both bring me deep joy. Our days around the house are filled with laughter and gratitude for the goodness God has bestowed upon us in these two tiny lives.
Overall, people have rejoiced with us in this new life. Even when others have said things that have been hurtful to me, I haven’t held on to the hurt because I know those slights have not been intentional. What do you say to someone going through an experience like ours, or even a different painful experience? I truly understand that it is hard to come up with words when others are walking a difficult road. (As an aside, you can never go wrong with “Congratulations” and “He/she is beautiful”). There is one thing I have heard quite frequently, though, and I think it sheds light on our unspoken beliefs as we try to understand the “whys” of life. That phrase goes something like this: “You are special people. God only gives these children to special/strong/wonderful parents.” This phrase (and others like it) is usually said with the intentions of trying to comfort, and I don’t hold that against anyone. I also know that most people who say this aren’t thinking about any deeper implication of their words.
My first thought when I hear this phrase is that it simply is not true. With an abortion rate that soars over 90% in some parts of the world, infants diagnosed in utero with Down syndrome are statistically residing in the most dangerous place possible. The greatest threat they face is, shockingly, from their parents. I do not know the exact statistics for other birth defects and malformations, but I think it is safe to assume that the same is true for them, as well. We live in a world where human life is valued only to the point that it fits within the comfort and vision we have for our lives. When an unborn child threatens to bring upheaval and disorder to a family’s perceived order and normalcy, that life can be easily discarded by a society that says, “Do what is best for you!” What I am saying is this: Trey and I were not hand-selected by God to be the parents of a child with Down syndrome any more than He hand-selected the parents who chose to abort their baby yesterday because they do not want a "broken" child. There is nothing special about Trey and me. All children are given as gifts by the Lord, but in this suffering and sin-stained world, not all children are recognized as having value. The truth of the matter is that, for every Alisa you see, there are nine children just like her that never even saw the light of day because their parents did not choose life.
While this phrase is often spoken to us with a positive view of God in mind concerning our daughter (God chose you!), the negative connotation is not far behind. The distant cousin to this phrase, often manifesting itself in times of great heartache, might come out in this way: “God, how could you let this happen?!” At the root of this view is a belief that all brokenness and suffering is assigned by God. I envision an assembly line-up of human souls as God, the Great Designer, cooly and impersonally hands out different struggles, diseases, defects, and suffering to His subjects. This picture does not align with what we learn of God in scripture, though.
So how do we reconcile God’s sovereignty with the world’s brokenness? How do we grapple with human suffering while we also cling to a belief that God is good and loving? More specifically for my family in this season of life, how do I rectify my trust in a personal and kind God with the reality that my daughter was born with, as the world categorizes her, “special needs”? I know at this point I am wading into much deeper waters, and I am limited by time and space for this blog post. But for today I want to offer this thought:
I don’t know.
I don’t know why things happen the way they do. I don’t know why God allows some to continue in suffering, but He chooses to heal or deliver others. I don’t know why some babies are born completely healthy, while others require immediate, life-saving interventions. I don’t know why some struggle their entire lives with depression or other types of mental illness any more than I know why others struggle with addictions or autoimmune disease. I just don’t know.
I do know one thing, though, and I think it is enough for us to think on today. That truth I know is this: none of us is an accident. I know that because it is clearly made known in scripture:
"For you formed my inward parts; you knitted me together in my mother's womb. I 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 ithe 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
We are all, as Psalm 139 describes us, “fearfully and wonderfully made” by God. From the most talented of athletes to the most uncoordinated of people, God was there when you were formed. From the most intellectually gifted scholar to the one who struggles just to get a passing grade, the Almighty fashioned you with His hands. The most physically stunning person in the room was knit together in the womb by God, just as the most ordinary looking person was. Alisa was formed in the womb by God - that I know. She is fearfully and wonderfully made in His image, just as her big sister is. Every sonogram picture I have is a snapshot of God’s creative design in the form of Alisa Jane.
How it all breaks down after that - between God's sovereignty, sin's damaging effects on His creation, and our free will - I simply do not know, except to remind myself that this world is not as God intended it in the beginning. We only see in part because our perception has been marred by the effects of sin. But the sovereign and loving God, He sees in full. He sees what we were meant to be, He sees us in our brokenness, and He offers us hope to reconcile the two. What the world looks at and says, “She’s broken!” and “He’s not like us!”, God looks at and confidently says, “Just wait and see what I am doing.”
With a depth of insight most people do not have in life, Judy Squier penned these words in closing her book: “As strange as it may sound, I tell people His Majesty and I met in utero when He put His stake in the ground and assured me that my birth defect was not a fetal fluke but holy design. His Majesty showing up in my brokenness makes it all worthwhile” (176).