Different, Not Less

To say I wrestled with the prenatal Down syndrome diagnosis would be a gross understatement. It rocked me to my core and, on a personal level, revealed the myth of religious fulfillment I had let creep into my heart. I cried, I grew angry, I lamented, I prayed for deliverance, I compared, I wrestled, I asked many questions rooted in self-pity. At some point, all I could read was Job, Lamentations, and select Psalms. Finally, by the end of the pregnancy, I was most angry because I felt like a target of God rather than a child of God whom he would draw near to. I know many here do not believe in God – to each their own – but for me, it is inexplicably a part of my story. 

I heard a pastor once described Abraham as a man who lived in restless torment: he believed God cared, but the evidence suggested otherwise. Similarly, I knew in my head the claims of the Bible, yet my heart was raw because the fiery arrows would.not.stop. Every appointment but one brought a new blow. We went from the diagnosis to a brain concern. The brain concern to a growth concern. The size concern to a hydrocele, fluid, and atresia concern. The atresia to an IUGR and SGA concern. The IUGR concern to a cord flow concern. The exhausted old man in Vincent van Gogh’s At Eternity’s Gate gave visual representation to my soul’s state. 

I read many posts about moms feeling miraculously different at birth; in disbelief, I rolled my eyes at most of them. Sometimes anger mixed with guilt bubbled up because I didn’t think I could be like many of you – thankful and in love. 

Yet, to any mama who can relate – especially if you are still pregnant – I can confidently report that there is hope. I sure didn’t see it for 26 weeks and 3 days, so feel free to roll your eyes at me too. When Alexander was born, I didn’t feel a connection. I didn’t exhale with relief. I held him and thought, “I am sorry you will have so many struggles.” He wouldn’t latch, which made me feel like a failure and fueled the disconnect. Yet, while I wanted to give away the extra chromosome, I knew I could do nothing but bring him home, learn to embrace our new life, and set him up for success just like we do for our other children. 

As our son has grown, scales have fallen from my eyes, and I have accepted this unique invitation to look at life and God from a new angle. I still haven’t received a call, text, email, or audible note from God, but we have experienced His love in the hands & feet of the church in ways I never have before. I am confident I was never His target, and while I cannot claim to answer the question of ‘why’, I trust in a way I didn’t before that His ways are higher and that He will work out what the world calls a genetic disorder for Alex’s good and ours.