2019. Just wow.

This time last year, we were ringing in the new year with hope and excitement. Just weeks into 2019, we said our goodbyes to the hospital that had become our home away from home and our newfound family of doctors and nurses. We drove away from the hospital feeling like first-time parents all over again.

Bringing Garrin home seemed to soften the memories of his five months in the NICU. We thought we’d made it to the happily ever after part of our story. But after just four weeks of having Garrin home, we were called to bring him in for what we assumed would be a typical office visit. That visit quickly turned into speculation of a couple of day stay and then into us being prepared for the worst. It was as if someone snapped their fingers, and whisked us back to the world of difficult conversations, near death experiences, and countless alarms. My brain struggled to comprehend how we went from being happy and seemingly healthy at home to conversations with an echoing theme of “Nothing is off the table.”

Since being admitted in February, Garrin has undergone a tracheostomy, gastrostomy, and hernia repair. He has had two diagnostic heart catheterization procedures, two CT scans, multiple bronchoscopies, and dozens of x-rays and lab draws. And oh yeah, there was that one time when he coded. We’ve been on the back and forth and up and down roller coaster of chronic illness. We’ve watched discharge papers turn into a transfer back to the ICU and had numerous “backs against the wall” conversations. More importantly than all that, though, is that we’ve been blessed to watch our now 16-month old son smile through it all.

2019 was traumatic and long. Garrin’s illness has weighed heavy on our family, but we are still optimistic. We keep pushing forward, looking for even the smallest hints of improvement in his condition. Thankfully, he has been stable for the last couple of months, arguably the most stable he’s been since being admitted. Our hope for 2020 is that the hospital will source an alternative home ventilator for Garrin to trial. We dream of bringing him back home this year; although, I think it will take more than a few weeks for the memories of this leg of the journey to fade.

“Only time will tell, as our memories fade into a past that isn’t meant to be a part of the future. Eventually, we have to find a way to let them go, to move forward and accept what’s to come.” ~A.M. Willard