Arden, Two Months Since Coming Home
February 15th marked two whole months that Arden has been home from the hospital! It’s weird how time operates. Now that we’re home, time seems to fly by, and I can’t believe how much my once five pound baby has grown. When we were in Edmonton, and Arden was in the hospital 24/7, there were days, weeks and even months where moments felt like hours. In the beginning, when we didn’t know how long our stay would be, everything moved at a snail’s pace. The future was so uncertain, none of our medical professionals even used the word “home” in our presence. That’s when you know it’s going to be a long way off.
As we learned and grew as parents of a medically complex child, our understanding afforded us more awareness of our timeline. There became a time when we knew the steps that Arden required to make it home, but everything was on his schedule. And did he ever like to throw us curveballs! After a while, when respirology or general surgery would tell us how the recovery of a procedure *usually* goes, Brodi and I would just nod and say, “We’ll see.” You see, Arden isn’t just a trach kid. Or just a gtube baby. To us, he’s just Arden. But underneath, he is more medically complex than many children our doctors had ever worked with. Most of the neonatologists and intensivists in the intensive care units at the Stollery Children’s Hospital had never heard the words “Escobar Syndrome” before they received his diagnosis from the geneticist. It was new to us and it was new to them. The steps that it took to get him home were often trial and error, as will be a lot of his development as he grows at home.
Often what we share with the world are milestones. Arden’s milestones sometimes don’t fit the typical timeline, and that’s alright with us. But it’s also important for us to share the work and processes that go into Arden’s achievements. When we share a photo of him in his exer-saucer, behind the scenes there are hours of practice that have gone into him sitting up, working against his scoliosis. When he’s reaching for toys, we don’t show the countless hours of stretches and therapeutic play that has gone into achieving that range of motion. When he’s smiling, we think about his first months spent in NICU, when he didn’t know what a smile was, because we weren’t allowed to remove our masks due to COVID-19. We’re so grateful for everything that Arden, and our family, has overcome. Every moment, and every milestone is celebrated. For us, it’s a big deal, and we don’t intend to take it for granted.
XO, Rayel