This week, one year ago, I was standing beside my son’s crib outside the operating room. I was looking at the soft place where his chest sloped to meet his neck. I couldn’t stop touching that spot.
Simeon was about to have a tracheotomy.
I think about that time a lot– learning the new ways my son would need care, learning new equipment and daily routines, learning that our lives would be just as rich as before– if a bit different.
Sometimes I hate the trach. Sometimes it feels so limiting. But in those moments of frustration– those moments of what if we never get this thing out?— I remember the good and I thank God.
- For the friends and family whose willingness to learn Simeon’s trach-care has allowed Greg and I to spend an evening together or get away for the weekend.
- For our home-care nurses who’ve become part of our family, who love Sim almost as much as we do, and who are now some of my closest friends.
- For the children with trachs and their parents who have supported us, loved us, and answered my frantic phone calls.
- For my son who, in the year since getting his trach, has gone from a tiny, frail, infant to a chunky and active little boy.
Nothing is all bad. And even when I sit in the ER (as we did yesterday managing another trach infection) or when I daydream about the day when Simeon will no longer need his trach, I know that saying goodbye will be bittersweet.