Every year since my husband and I got married, we've traveled the 8+ hour trip to spend a week at our favorite beach with extended family.
We've done it with nursing babies, teething babies, potty training toddlers, motion sick preschoolers, a tube fed baby but never (not until this year) an IV dependent, medicine needing and tube fed 4 year old that wakes up multiple times a night sick and in pain.
When Case got his central line in January, I can honestly say I was hesitant taking this yearly trip.
When he then landed in the hospital 5 times in 5 months this year with infection, low platelets and various other problems, I was convinced we shouldn't go.
All we had to bring. Things I couldn't just pick up at Walmart if I forgot it.....The billions of bacteria I was sure we're just waiting to crawl in his line...All of it scared me and I'd consider myself one that isn't easily fearful. It would have "just been easier to skip the trip".
Then, during one of our April admissions I talked to one of my favorite Drs on his Intestinal Care team. Long story short, she said to "let him live". Told me all the precautions. He couldn't swim but he could splash once I cover the crap out of the line and dressing.
It was those words, "let him live" that hit a feeler deep in my heart.
Yes, we'd have to scope out the nearest hospital. Yes, there was a chance he'd wind up life flighted back to PA with infection, a broken line, etc., etc. (I thought of every worse case scenario).
Truth is, it would be easier to keep him home. Heck, it'd be easiest to make him a bubble boy! But we didn't. Not because we're irresponsible or selfish but because we need to "let him live."
In January of this year he was diagnosed with intestinal failure on top of his dozens of other diagnosis'....and the reality is, we don't know what tomorrow brings.
We hope to give him every opportunity possible to be a boy. To explore and enjoy life outside the four walls of the hospital.
Is it easy? Heck no. It's hard work! There are tubes and pumps. Puke and medication.
Just a day trip requires so many supplies and medicines, syringes and stops but this summer was the summer we "let him live."
From the beach to fishing and amusement parks, Case and our little family lived in the moment and were blessed to enjoy the summer together.
We're there hospital trips, a broken central line and other shenanigans? Yes. Was it because I was irresponsible and not careful, no. It's because this new life, this crazy journey is full of unknowns but those unknowns won't stop us from "letting him LIVE!"