It’s been exactly one year since we were a family of six outside of hospital walls living the life I wanted us to live. That night, we took everyone, including Garrin, to Applebee’s to celebrate Lucy’s 8th birthday, one of our very few outings with him other than visits to his pediatrician. We sat in the restaurant’s main aisle, and I remember worrying as each customer passed by that one would cough or sneeze in Garrin’s direction – I knew how bad a cold could be for him. Little did I know Garrin was already sick.
The next day Garrin was admitted to Children’s Hospital and Medical Center. I remember wailing as the admitting attending in the NICU repeated over and over how bad Garrin’s lungs were and how dire this made his condition. Much to everyone’s surprise, Garrin never developed cold symptoms, but an echocardiogram revealed another condition that required a level of breathing support that prevented us from taking him back home. Several procedures and one year later, Garrin is still in-patient at Children’s Hospital. I wish I could tell you that things are better, that a year in the hospital has done him well. I wish I could tell you that our family is handling this leg of the journey with ease, that our faith is stronger than ever. I’m not sure what’s true right now.
The last eight weeks have been extremely difficult for all of us. Garrin has been sick and had oxygen needs all over the place. At times, I still question authorizing the tracheostomy: To my untrained eyes, his condition has remained largely unchanged since the procedure. My two oldest kiddos seem to be handling the stress of hospital life better than the rest of us. They are well-adjusted and excelling in school. My third is struggling a bit more than his older siblings. Like me, he has big feelings, and also like me sometimes, he isn’t sure what to do with them.
Scott is our rock. I cannot imagine living this life without him by my side. He takes each new hurdle in stride while each one nearly crushes me. With each setback and as each holiday, birthday, or anniversary passes, I struggle to not be consumed by fear and regret. I worry that Garrin is getting worse and not better. I agonize over the option of moving him to a different hospital to get new eyes on his case. I have horrific dreams of him never coming home. I blame my body for not keeping him safe. I regret the consequences of this journey for my older kids. I sometimes wonder how I will put one foot in front of the other and keep doing what we’re doing, and I’m disturbed by the fleeting thought that my faith might not be enough to get me through this. Then I remember that I did in fact put one foot in front of the other today, and there is no way that I could keep doing that without God pushing me forward.
Some days, it’s harder for me to feel his nudges, to see the silver lining, even though I know there’s so much of it there. Garrin is the happiest baby. People say that about their own kids all the time, but this kid is so happy that when he’s crying, my first thought is to have the provider run labs because if he’s crying, he must be getting sick. With the exception of trach cares and having his ears looked at, he never cries. His bright personality makes him a fan favorite in the PICU. Garrin has dozens of girlfriends that come to see him every day. He is so loved, even when we can’t be there for him. And I can’t forget the new home vent. Garrin is scheduled for his first two-hour trial on the Astral ventilator tomorrow at 2:00 pm. We have so many things to be thankful for.
Friends, I’m going to wrap this up by again asking for your prayers. Pray that God fills us with his grace so that we might follow his lead with patience and not fear, that we might trust in his process and let go of our timelines, and that he leads us to and through the next thing.