Two Not Good Options

Nathan’s G-button came out the other day. Poor Mac went running around yelling, “I don’t like looking at it!” We told him to leave the room but it was like watching a car wreck and he just couldn’t turn away. Poor kid. He later told us, “I didn’t want to be in the other room all by myself and I didn’t want to see the hole in his tummy.” Right. Two not good options. Sorry buddy. How many times in life are there two not good options?

That’s how I feel about many of the medical decisions we make for Nathan. If we opt for surgery, then it means he has to go through the procedure and recovery process, not to mention possible risks. It’s painful. If we don’t pursue medical intervention, then we are short-changing him on something that can possibly be corrected. Painful in a different way.

Two not good options.

The eye muscle surgery he had last week was by far the easiest one yet. However, it didn’t provide the instant fix that my husband and I were hoping for. One day post-op we started to notice that instead of drifting out, his left eye especially, was now drifting in. Did we make things worse? Should we not have operated after all?

The spinal cord surgery that he had last year left a bump on his lower back. I mentioned it to the nurse practitioner at Nathan’s last neurosurgery appointment. She felt that it was fine, just a result of the way his muscles are healing. How do you define fine though? Because yesterday his PT and OT happened to be here at the same time and agreed that the muscle is causing him to twist and not hold up his left side as well. He flops to one side and uses his right side for most everything.

It’s a tension of choices. Two not good options that we are forced to choose between. We struggle with this same theme over and over again.

I’m starting to realize that with Nathan it’s about marginal improvement, not quick fixes and cure alls. And the more I wrestle with things not being all better, the more I surrender to the way things are with him, with me, with our whole family. It’s taken me almost two years to try living more surrendered, more peaceful, more prayerful, less anxious, less wondering, more accepting.

As mom, it’s hard to not be able to make everything better for him. Somewhere along the way I assumed that was part of my job. Choosing between two not good options is showing me that sometimes there simply isn’t a best possible solution.

Today at Nathan’s post-op ophthalmology appointment I learned that it takes time for the eyes to balance out. So there’s still hope. And we know that he now has depth perception, which is encouraging. His new depth perception has stirred his interest in TV and you better believe I am internally cheering that he may actually pay attention during TV time. (A mom’s gotta have some tv time to keep sane.) We’ll follow-up again with the ophthalmologist four weeks from today. And keep waiting and praying and trusting and surrendering all over again.

The Lord is good to all; He has compassion on all He has made.” -Psalm 145:9

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!

#eyes #neurosurgery #surgery

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