A couple of months ago Nathan’s teacher asked for pictures of him for his life timeline. I went digging. As I clicked through hundreds of photos from his five years on earth, I felt like he was just born yesterday. I still think of him as a baby–he has microcephaly (small head size), baby-fine hair, and he doesn’t yet walk or talk.
But as a surfed I noticed he has changed a lot. He was a tiny little thing, five pounds, nine ounces. He did hardly anything the first two months of his life in the NICU, yet he did everything and fought for his life.
I remember saying to myself back then that I needed to enjoy his babyhood. It wouldn’t last forever. Not just because of how most children grow up, but because of how Nathan wouldn’t. I felt I desparately needed to enjoy him when no one quite noticed his differences.
Though I knew that, I didn’t do that.
I was lost in a kind of grief I had no idea how to navigate. Not only was I fighting for his life, but my own life in a sense too. I tried to hang on to everything baby about him, but there were many things that just weren’t–his feeding tube, his numerous medications, his bouts of pain and his unending specialist visits. It was hard to hang on to normal.
Eventually I realized I didn’t have to find normal.
Just as that clicked, his babyhood passed me by.
I’m not sure that I could do it any differently honestly. I tried to savor every bit of his newness. Fresh into this world with all of the miniature clothes and baby equipment. Plus some.
The plus some is what I couldn’t change. For Nathan there is not a cure for his syndrome. It is part of the very essense of who he is.
Over the years I’ve struggled a lot with the question of, “Is this how God made him?” Or, “Is this just something God allowed?” The questions don’t seem realevant anymore. The questions did serve their purpose though. They sent me to my knees and into the presence of God. I realized that those aren’t the questions. And the answer is that God alone is Sovereign. He has all power beyond any that I could ever hope for and He has a good plan, for my life and Nathan’s.
Sometimes realizing the things that you can’t change, change you.
I can’t take away Nathan’s disabilities or help him progress at a faster rate. Nor can I guarantee some outcome for his adulthood or ensure that he will always be properly and lovingly taken care of. I can only trust that God, the Sovereign One can, and will, do these things.
In the process He has changed me.
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!