The trach is now part of our past story– a piece that, week by week, drifts farther away into the past until it is something we will marvel at like a strange, ancient artifact.
Someday, she will wonder. And someday she will ask me about her scars. So, we will pull out that multi-faceted story. We will show her its rough edges, the ones that darken the tighter we wrap them in our hands.
But then– we will hold it up to the light. We will show her the way that gem of a story glows, the way those rough edges create the most magnificent brightness.
In May, K was decannulated! (Decannulation= removal of trach tube) If you don’t have any experience with a trach, let me tell you what this means to us: We no longer travel with oxygen tank, suction machine, extra trach supplies, extra trachs, and sterile gloves. We have said goodbye to four wonderful home health nurses who used to be in our home every night and three days out of the week. (We do still have one fantastic nurse who is with K just one day a week.) We do not have to suction her trach tube or fight her to clean the trach site or change out the trach. The hole is her neck is slowly starting to close up.
But– and there is always a but– we still wait. Her airway is adequate, but not great because her vocal cords still do not open as wide as they should.
As she grows, her vocal cords may get stronger and open wider. However, if she has trouble when upset or when exerting herself, she may need surgery on her vocal cords (which would include a 6-week recovery time with a trach tube back in). We will watch her and make a decision soon.
She breathes, and I hold my breath.
The creased-brow worry– it’s still there like a muted chronic pain. And I’m starting to realize that it may always be there. Perhaps that’s just parenting, though– sometimes sharp and sometimes dull, but always always there as we wonder and worry and pray and train and just do our best.
She breathes, and I hold my breath.
She’s crawling and getting into things like a champ. She can hold a pencil better than I can. She’s pulling up on her feet. She is startlingly smart. With the help of a fiery little disposition and some awesome therapists, she’s doing the things we didn’t know if she’d ever do when we were thick in the middle of our NICU time.
So, we settle slowly into a life normal-ish.
When you’ve gone through something that changes you, I don’t think you ever change back. “Normal” no longer applies.
But, great stories do not come without some scars. Everyone has them– some you can see; some you cannot. Newly healed, they are angry red. But as time goes on, they fade and simply become part of who we are– a faint reminder of a time that marked us.
My girl– she will have some scars. Someday she will look in the mirror at those small, faint lines on her throat, her stomach, her feet, and she will ask why.
So, we will tell her the story of her first years. Her daddy, her sister, and I– we will tell her how those scars saved her life and made us all different.
And here’s the truth I hope my girls both come to know: There is mercy in trial.
Both James and Paul write about this. They know the secret. God’s blessing does not always come in the form of a whiz-bang-everything-is-easy-again miracle.
James 1 says, “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.”
And in Romans 5, Paul writes, “we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.”
I feel Him sanding down my soul with each tick of the clock. I know He’s changed me, changed our entire family. God wrote this story; He wrote all the others. And I don’t know why. I really don’t know why.
But, I have an inkling: for each of the tiny encounters we have had. The people we can look straight in the eye and say, “Me too.” The strangers we have hugged– the ones who have become dear friends as we walk down parallel paths and see each other grow strong.
It’s a funny thing about trial– Paul says it produces hope. But, the hope that I’ve found is not necessarily a hope that things will get normal.
The hope sparking in my soul is that eventually, one day, I will see my God. The work will be finished, and He will call me by name. The God of the Universe will hold my shoulders and say, “Well done. Well done, my good and faithful servant.”