Perfection Redefined

The month of June is Arthrogryposis Awareness month. As we go through this month, I hope to reflect each day on our experiences with Helena’s condition. AMC is an umbrella condition that affects around 1 in 3,000 births. This post, originally published on May 19, 2019 when Helena was 4, is the first reflection.

“Something’s wrong, isn’t there?” I asked Stuart immediately after the ultrasound technician left the room. We were at our 20 week checkup, excited to find out that our baby was a girl. But the technician was just a little too quiet, and a little too focused on her work.

“Try not to worry,” Stuart said. And then he continued trying to distract me from what he saw going on. His distractions had been working for a while — until I finally noticed that the technician was concerned.

What I didn’t realize until later was that they were having trouble detecting her heartbeat. The technician was also alarmed because there was no evidence of movement. When she returned to the room, she brought another technician back with her and they found Helena’s heartbeat. After they finished looking at some other measurements, they explained that my doctor needed to meet with us. My heart rate soared, my blood pressure went up, and I sank into sorrow. What was wrong with the baby?

A couple of weeks later, we met with a neonatologist and were told that our daughter Helena would be born with a condition called Arthrogryposis Multiplex Congenita (AMC). AMC affects 1 in every 3,000 births and is defined as the development of multiple joint contractures affecting two or more areas of the body prior to birth . The neonatologist noted that Helena had clubbed feet, seemed to be in a lotus position, and had straight arms. The doctor explained that there was really no way of knowing how severe it would be until she was born. We were told of the possibility of limited locomotor movement, possible breathing problems, and difficulty doing many of the daily tasks of living that most of us take for granted.

I was furious after this diagnosis. I was mad at the ultrasound tech. I was mad at the doctor. I was mad at the nurses who took my blood pressure and vital signs. And I was mad at God. How could God allow this to happen to my baby – or any baby? No one knew if she would be able to care for herself, or even breathe without help. The worst part for me was that I could do NOTHING to help her, or so I thought. I sulked and stewed for days over the fact that this time, I could not control the situation I was dealt. I talked with Stuart about my anger on numerous occasions, and at one point, Stuart finally said this:

“Jennifer – who are you to think you know better than God what is best? God made Helena in his image. He doesn’t think anything is wrong with her. He thinks she is perfect the way she is. Who are you to judge God’s perception of what is beautiful and complete in His eyes? God thinks Helena is His perfect creation, created in His Image and you need to wrap your brain around that.”

Stuart’s words were both honest and perplexing. How can God think this situation is perfect? Is he kidding me? The more I thought, the more my questions changed toward conviction: If this was God’s vision of perfection, then why was I judging God’s decision about what was perfect? Why did I have the idea that God was unable to work through this situation as he had in so many other moments in my life? Who was I to limit God?

As I sorted through an array of questions and emotions, I was able to move forward and learn more about AMC and parenting a child with a disability. It has been a journey much like going up a creek without a paddle because every AMCer is different, and very often, we are doing things very few others have had to do. Making decisions in this situation can be very isolated and lonely. What we have learned most of all is that what we think God considers to be creative perfection isn’t really the case – we limit God in so many ways, and in doing so, we limit ourselves, we limit others, and we limit what is possible. Helena is now four and a half — and If I had been able to look forward, I would have been relieved to know that there is no limit to what the future holds for her.