On the nursery wall directly across from where I sit to feed Nafe hangs this verse, “I knew you before I formed you in your mother’s womb. Before you were born I set you apart.” – Jeremiah 1:5
This framed verse is a shower gift from a sweet friend. It’s beautiful. I love looking at it and read it multiple times a day. I often meditate on its significance especially because of who God made Naffer to be.
As his mother I am probably the one who knows him best, yet there is Someone who knows him even better. Someone who knew him even before He formed his little body. Before a single strand of DNA was strung together. Before the short arm of the fifth chromosome was broken exactly in the spot that it was. Before we even knew that we would be having another biological child. Before all that, God dreamed up the idea of Nafe. In spite of all his imperfections–imperfections as I would describe them and as the world would define him–God made him perfectly imperfect.
There are several things I began to learn about Naffer in the weeks following his birth that I didn’t want to know. Things that I would have been much more comfortable with from a distance. Or, would I have even been comfortable with that? Because honestly, people with special needs make me uneasy. I struggle to relate to those who are different from me, visibly or otherwise. I think a lot of us feel that way. Even though God knows all my fears, He still chose to form Nafe in my womb.
I often describe Naffer as a soul with a body that is not well made for functioning in the world. I’m slowly learning that my job is to help him live in this world given who he is. That’s not going to be easy.
At just two months old he gets frustrated when secretions collect in his mouth and he can’t swallow. He looks to me for help and completely stressed out every time he chokes. He kicks his feet out harder than you’d think a baby would when he’s trying to open up his airway. I find myself telling him to “relax” and “just breathe” as if those things should be so easy for him. They should be. He’s human. Yet those things don’t come naturally to him.
There are moments that I’m completely in awe of him. He will look me in the eye and hold my gaze so well that I can’t possibly look away. As much as we know there are parts of his body that are broken and ill-equipped for this world, I know his spirit is not. He startles when I use a firm tone of voice with Mackle. He turns my direction when I laugh at something or when Mackle goes whizzing by. When I pray or cry holding him, he becomes completely still as if he’s listening in real hard. And when I try to set him in his crib after soothing him to sleep, he slightly opens his eyes and peers up as if to say, “Don’t you dare put me down. You know I prefer to be held.” I believe he wants to communicate and connect and bond with me, and the rest of his family. I’m so thankful for knowing that. That’s why I hold him the majority of the day.
Still, there are so many things that I still don’t know about this little body. So much remains a mystery. Will he ever eat by mouth? Will he walk? Will he talk? Will he laugh? Will he be a good sleeper? Will he enjoy going to church with us? School? Will he humor his big brother by playing along with his games? Will he like sports? Will he like the beach when we visit Grammy and Grampy? Will he like the snow in Chicago when we visit his other grandparents? Will he have friends to play with? Favorite animals? Colors? Will he have a relaxed personality or will he be anxious?
His name means “gift of God.” God gave us a gift that we did not expect but He knows Naffer fully and completely. He knows all the answers to these questions that I do not. He knows how He wants to perfect all of us through Nafe’s physical imperfections. As I learn the insignificance of the physical realm, which is fading, and the spiritual realm, that is everlasting, I am more able to embrace this gift. Our Naffer is truly a gift foreknown by God.
I knew you before I formed you in your mother’s womb. Before you were born I set you apart.” – Jeremiah 1:5
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!