A parents perspective
If you have not had the chance to read A Parent’s Perspective: Our Son’s Short Bowel Syndrome Diagnosis, I encourage you to do so. While the goal is to give as much insight into Short Bowel Syndrome as possible, we want to steer clear of the boring clinical information online. From one Short Bowel Parent to another, trust me, you’ll have no better teacher than experience itself.
Last night was tough.
I do not know about you, but our child with Short Bowel Syndrome does NOT sleep. In the beginning, we recognized a lot of it had to do with his Ostomy. I mean how comfortable can it truly be to sleep with a bag of acidic output sitting on your irritated skin? In truth, we were hoping that would change immediately following his re-anastomosis (or reconnection surgery). For a few days, it did… and then the anesthesia and pain meds wore off.
Fast forward another 5 almost 6 months later and we are still waking up to change diapers and check to see that he is not tangled in his TPN tubing (something else I will write about at a later date, but whoever thought it was a good idea to put 10+ feet of wire in bed with a kid…no comment for now). Regardless, we just don’t sleep.
I like to consider myself to be a pretty calm and patient person. As a parent, I pride myself on not sweating the small stuff. Perhaps it is relative to the things we have been to until this point but I don’t cry over spilled milk (or ostomy output).
However, regardless of how patient I like to think I am, 5 hours of sleep (6 if we are lucky) a night for over a year will wear even the patients of a monk thin.
I lost it.
In full dramatic effect.
I grabbed my pillow.
I stole the throw blanket.
Unplugged my phone.
I stumbled into my house shoes.
And stormed off to the couch.
“YOU DEAL WITH IT!” I exclaimed to my wife as I made my way to the couch.
Okay, so it’s 3:30 am, and not only did I start an argument with my wife, I recognized how small our apartment truly is. The crying, the laughing, the sudden urge to start gymnastics in the middle of the night, echoed through the halls and continued to keep me up.
Nonetheless, whether it’s sleep or just the frustration of age-appropriate behavior. Kids are a tough responsibility and will quickly push to a point that you otherwise probably wouldn’t have gone to.
I guess for me, this was another reminder of what my child is dealing with. In reality, the truth runs through my mind…
He probably has to poop or has already gone.
We have all been in the car, at the store, or in a meeting and suddenly the urge strikes. When you gotta go, you gotta go… but come on, how comfortable can that be sleeping with the urge to go or having gone and sitting in it.
He has a lot going on.
Maybe he is hungry from just going to the bathroom, maybe his butt is sore, maybe it is the tape from his central line dressing, perhaps the G-Tube is leaking.
I cannot even begin to wrap my head around all that he may be feeling and to be honest, how difficult that must be when you cannot open your mouth and articulate what it is that’s bothering you.
Nonetheless, I like to think that our child with Short Bowel Syndrome is here to make me a better person. As I sit here, write and reflect on my outburst last night, I am reminded of truly how important sleep is…
No, I’m just kidding.
I am reminded of how short my fuse is for anything or anyone when I neglect my ability (and responsibility) to sympathize. Take a moment and truly think about the things that could be going on with the other person and within their lives.
As the parent of a child with any condition, I like to believe that there is an immediate shift in our behavior or perspective. We are quickly humbled by our experience and reminded of how important understanding truly is. You have no clue what that family is going through, what that person is dealing with, how much sleep they got the night before (for whatever reason) and for all you know… they might have to poop!
I will keep this one short and sweet but I encourage you to take a deep breath and remind yourself truly how important patience and sympathy are in navigating your life. So rather than get upset, thank your child for the subtle reminders they send to frame your better self.
I am going to get back to work, changing diapers, and ideally a nap. Until next time, I encourage you to share your story and join Eclipse Regenesis in changing that course for pediatric Short Bowel Syndrome patients.
Stay strong, keep focused and remember, it’s only poop.
– The Short Gut Parent inside of us all