13 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.
It’s not a secret that I am a follower of Jesus. He has changed me forever and I am ruined for anything else but Him. I heard the above verses over and over after we learned Emmy’s diagnosis. They were recalled many times in my memory and written by our friends to reassure us. But there was a struggle that I couldn’t get past…a seeming conflict actually. Why was Emmy made this way? Why do my other children have every piece of the DNA they need and Emmy is missing 26 genes? 26 genes that will make such a profound impact on her life and ours? I had to let the question sit. I gave it space in my thoughts. I let it burn in my mind for some time. It hurt. My heart was broken. But I had to allow it to be there so I could stare at it for a while. I couldn’t dismiss it and yet I couldn’t come to terms with an answer. And I wasn’t content simply accepting an answer I had always received. If the God who loves us knit Emmy together in my womb, did He leave part of her 7th chromosome out on purpose? Or did He simply allow it to happen…
I think the answer may be “both”. I don’t believe anything happens outside of His providence so I still had to believe He created her exactly as she was. And yet I also know that He does not intend for anyone to suffer. He didn’t “mess up” so in that sense I had to believe that He allowed it, even though He knew she would struggle. I also knew that I would never completely get my head around it. So then my focus had to shift…
Maybe I’m not supposed to know. Maybe there are some things that are meant to be secrets. Maybe it mattered more how I responded to a life that was different than I’d imagined…
Could I be grateful in the midst of heartache? Could I acknowledge my sadness but then choose to embrace the hard things? Could I relinquish my fear of something happening to my children…because something finally did happen? Could I work hard to get Emmy what she needed when I felt like running and hiding? Could I ask for strength to keep going as an already exhausted Mama of four? And give myself grace when I inevitably fail in every one of these areas?
I want to say my answer is yes. Not every time…sometimes I feel like it’s impossible. Sometimes I give up and get lazy or angry or selfish. But I can try to keep coming back to the “yes”. Because I love Emmy. Because I love my other children and they need the best chance they can get at a life and a faith that fills them. I know as their mom I can either make that easier or harder for them depending on my response to these hard questions. I don’t fully understand the “why?”. But I’m kind of happy about that. I want the “why?” to be secondary to the state of my heart. He is good and I can trust that Emmy is indeed fearfully and wonderfully made.