I haven’t written about Nathan’s pain much lately.
It’s not as bad as it was one year ago.
It’s not completely gone either.
For better or worse, I’ve learned how to live with it. Sadly, I think Nathan has too.
A few weekends ago my husband was with the boys for an extended period of time and witnessed one of Nathan’s screaming fits. He hadn’t seen one in quite a while. It really shook him up. Then I started to wonder if it should be affecting me more too? I’m used to them. Am I becoming too callous? The screaming doesn’t emotionally wreck me like it did before.
A little over year ago on Valentine’s Day we met with a neurosurgeon who decided it would be a good idea to operate on Nathan’s spine. There was a fatty filum at the base of his spine. The filum caused something called a tethered spinal cord. This is common in kids with neurogenic bowel/bladder issues like Nathan. Common with kids who have knees drawn up like Nathan. Many times, after an operation the associated issues will resolve and therefore the pain goes away.
I can’t say the surgery has corrected all of the problems Nathan is experiencing. He still has visible bouts of pain though they aren’t nearly as frequent as they were before. He is sometimes still holding his urine too long. His knees still remain drawn up. I can’t say it hasn’t helped either. Because he did start crawling this year. Without the surgery we don’t know that he would have the same level of mobility that he does today.
So with this boy we just keep praying through each medical decision, each surgery. We pray that he’ll have less pain.
March 4th was the one year mark of Nathan’s spinal surgery and all of my feelings and memories of that awful recovery are being drudged up. (G-tube surgery wasn’t all that great either as he decided to stop breathing twice post-op. Bottom line, I’m not really a fan of surgery.)
He’s having another one on Tuesday March 10th. Eye surgery. Almost one year later.
This surgery however, should be “easy peasy lemon squeezy,” as Mac likes to say, compared to the others. This one is for a condition called strabismus, where both of his eyes are turning out. The doctor is going to cut the outside muscles to prevent them from drifting out. It’s a straightforward procedure and we don’t expect that he’ll be admitted afterward. Our hope is that he will be at home recovering by the afternoon.
“There’s no winning here.”
Those were the worst words to hear. Those were the best words to hear. They were the words of our pastor when he visited Nathan while in the hospital recovering from spinal surgery.
He was referring to the fact that it’s not like Nathan broke a bone and we are waiting for healing. There is no healing for broken chromosomes this side of heaven.
All of these surgeries feel like patchwork down here on planet Earth. We are just trying to patch this problem and then that problem and that problem: The G-tube surgery helps him receive his nutrition. The spinal surgery helped him become more mobile. The eye surgery will help him see better.
There’s no winning down here, but we do not live like those with no hope either. We do have the hope of heaven when Nathan’s body will be fully healed and fully made whole one day.
And we know that one day we will all see more clearly, more fully the purpose of pain. It’s true there is no winning down here. But in the end we will be great winning, victorious winning and unprecedented healing.
Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.” -1 Cor 13:12
He will wipe every tear from their eyes. There will be no more death or mourning or crying of pain, for the old order of things has passed away.” -Revelation 21:4
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
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